Challenges in evaluating childhood bereavement services
Rolls, L.
(2011)
This paper discusses the evaluation of childhood bereavement services in the UK policy context and some of the challenges this presents. Two key difficulties are discussed: the lack of any clear, agreed outcomes from bereavement interventions with children, and the challenge of evaluating the complex social processes that bereavement interventions involve. Two recommendations are made to address these in the short term and to generate data for wider research. These are: to strengthen services' existing evaluation strategies, and to develop a routine evaluation package that can be used by all services. This would comprise a basic data set, a user satisfaction questionnaire, and a childhood bereavementfocused clinical outcome routine evaluation measure. In the longer term, further research is recommended, including UK-based longitudinal studies.
Coping, stress resistance, and growth: Conceptualizing adaptive functioning
Holahan, CJ., Moos, RH., & Schaefer. JA.
(1996)
ABSTRACT analyze the coping process, emphasizing the relevance of coping research to understanding adaptive functioning more generally / begin by considering general conceptualizations of coping, and present an integrative conceptual approach / describe the relation between different coping strategies and adaptive functioning / present 2 models of adaptive functioning—reflecting both stress resistance and crisis growth—that depend on coping as a central mechanism / highlight key issues that refine our general understanding of coping and adaptation.
Decreasing the risk of complicated bereavement and future psychiatric disorders in children
Kirwin, K.M. & Hamrin, V.
(2005)
Abstract
TOPIC:
Decreasing the risk of complicated bereavement and future psychiatric disorders in children.
PURPOSE:
This literature will determine what major factors influence a child's response to death and to understand how children react to the death of a parent at different developmental stages. It will evaluate the following: a) What are children's emotional responses to the death of a parent? b) How can a surviving parent help the grieving child complete the tasks of grieving? c) What skills are important for a parent to learn in order to help the grieving child through the tasks of grieving and d) How can mental health providers help the grieving family and the grieving child?
SOURCES:
Relevant literature from child psychiatry, child psychology, and nursing.
CONCLUSIONS:
The death of a parent is a major stressful event for children and their families. This traumatic event can bring serious psychological and social distress to bereaved children and their families. Children who are not supported in the early phases of grieving can develop serious emotional and behavioral problems that can lead to the development of some major psychiatric disorders. Providing early prevention support programs for surviving parents and bereaved children can help both the parents and the children adapt to their losses. These structured programs can decrease the risk of complicated grief in bereaved families. More research studies are needed to validate the effectiveness of these early prevention program interventions.
Det moderna föräldraskapet – en studie av familj och kön i förändring
Bäck-Wiklund, Margareta & Bergsten, Birgitta
(1997)
Den moderna förälderns lott är att ständigt reflektera över sig själv - som förälder, som partner, som könsvarelse osv. Värderingarna hemma och på jobbet är olika, kraven från båda håll är alltid stora och kvinna och man förväntas leva jämlikt. Föräldrar i dag känner sig splittrade och otillräckliga. I denna mångtydiga situation måste vardagen fungera. Det är då de traditionella rollerna kommer till användning igen, men på nya villkor.
De flesta i vårt land säger sig stå bakom ett jämställdhetsideal, men hur lever vi egentligen i praktiken? Den här boken lyfter fram familjen som en plats där jämlikheten sätts på undantag. Boken består av två delar. Den första handlar om den svenska välfärdsstaten i ett familjeperspektiv och kulturella föreställningar kring kvinnligt och manligt. Teorier om familj, kön och föräldraskap i det moderna samhället presenteras och problem inom den empiriska forskningen diskuteras.
I del två analyseras hur vardagen ter sig för ett trettiotal unga barnfamiljer som författarna följt under mer än två år. Resultatet visar hur svenska föräldrar ser på bland annat barnuppfostran, hem- och lönearbete, kvinnligt respektive manligt. Samtliga föräldrar sätter upp barnens bästa som det viktigaste målet i sina liv, men mödrarna väljer andra sätt att förverkliga det än fäderna. I ett särskilt avsnitt analyseras moderskapet. Där framträder det dåliga samvetet som ett tidens tecken och att säkerhet i modersrollen nästan alltid förutsätter en trygg förankring på arbetsmarknaden.
Det tårdränkta barnet : min berättelse om att bli pappa till ett barn med utvecklingsstörning
Karlsudd Peter
(2015)
VARFÖR DENNA BOK?Den här boken påbörjades för tjugofyra år sedan. Då kom vår tredje dotter Lisa till världen och hela vår familjesituation förändrades i grunden. Lisa föddes med funktionsnedsättningen Downs syndrom, eller mongolism, som många felaktigt kallar det. Under Lisas första månader skrev jag ner mina tankar och reaktioner i form av anteckningar och dikter. Mycket text kring förtvivlan, sorg, skam, ilska, hopp, kärlek och det som jag, och säkert andra mycket tidigare än jag själv, uppfattade som självömkan.Efter några månader övergav jag mitt skrivande, troligen för att jag inte hade samma uttrycksbehov. Men säkert också för att mitt samvete inte ville konfronteras med mina formuleringar. Behovet av att skriva dikter avtog. När jag sjutton år senare hittade en gammal utskrift av mina anteckningar föddes idén om att fullfölja berättelsen fram till dags dato. En fortsättning på en historia som varit arbetsam, men som stärkt vår familj och gett oss särskilda erfarenheter och livskvaliteter. En viktig anledning till att nu avsluta berättelsen var att söka en förklaring till varför jag reagerade som jag gjorde när Lisa föddes. Var mina reaktioner ovanliga? Kunde andra uppleva situationen på liknande sätt? Samtidigt sporrades jag av en slags nyttoinriktad ambition att få andra att förstå min upplevelse: I ett av mina lyckligaste ögonblick ställs jag inför faktumet, att vårt nyfödda barn har en funktionsnedsättning. Så den här boken blir främst en personlig vittnesbörd. Men den som tagit del av den vill säkert gå vidare, vidga sin kunskap och få veta mera. Boken avslutas därför med en referenslista över vetenskaplig litteratur och information kring mitt ämne. Jag hoppas att detta kan inspirera till vidare läsning och diskussion. Vid varje kapitelslut finns korta sammanställningar av fakta eller refererat av det viktigaste jag läst. Forskning vill ju annars alltid bli för lång, det är därför den blir vad den ska vara, i bästa fall: Ögonöppnande, och utan slut. För den som vill koppla bokens innehåll till utbildning finns ett textmaterial: "Det tårdränkta barnet. Forskningsgenomgång, diskussionsfrågor och förslag till arbets- och fördjupningsuppgifter", som lätt kan laddas hem på webbadressen karlsudd.se. Här kan du även se Lisas bilder i färg.Min berättelse här bygger alltså på mina personliga erfarenheter. Jag vill betona det, allt jag skriver får givetvis stå för mig. Jag har försökt anstränga mig för att göra rättvisa åt övriga familjemedlemmars minnesbilder. Under fem somrar har jag försökt slutföra texten, men inte lyckats. Eftersom Lisas utveckling gått bakåt de senaste åren har det varit svårt att skriva om den tid som varit. Om du läser den här texten omgiven av ett bokomslag, har jag trots detta lyckats i mina föresatser.Boken tillägnar jag Lisa - vår underbara dotter och syster som har gett oss så mycket glädje, kärlek och insikter i livet. Som vi alltid säger till henne vid läggdags: VI ÄR STOLTA ÖVER DIG, VI ÄR RÄDDA OM DIG OCH VI ÄLSKAR DIG.Pappa Peter, med uppmuntran från mamma Marie och storasystrarna Anna-Mi och Hanna.Karlsnäs, 2014
Determinants of subjective and objective burden of informal caregiving of patients with psychotic disorders
Flyckt L, Fatouros-Bergman H, Koernig T.
(2015)
BACKGROUND: In a previous study, the objective burden of informal caregiving to
patients with psychotic disorders amounted to 22 hours/week, and the subjective
burden was huge with predominately anxiety and depression as main symptoms. In
this study, determinants of the informal caregiving burden are analyzed to find
foci for interventions to ease the size of burden.
METHODS: Patients with psychotic disorders (n = 107) and their informal
caregivers (n = 118) were included. They were assessed with a comprehensive
battery of rating scales including patient and caregiver characteristics as well
as the amount and quality of health-care provision.
RESULTS: A multiple linear regression analysis showed that the subjective burden
was significantly lower when patients had higher levels of functioning and when
the health status of the informal caregivers was good. No significant
determinants were found for the objective burden, but an association was found
between a higher socioeconomic status of the caregivers and the amount of money
provided for the patient. An association was also found between a positive
perception of caregiving and more hours spent on caregiving.
CONCLUSION: The functioning level of the patients was the main determinant of the
subjective burden of informal care. For the objective burden, no main determinant
was found.
Developing new strategies to support future caregivers of the aged in Canada: Projections of need and their policy implications
Keefe J, Légaré J, Carrière Y.
(2007)
Projections of future need for Canadian continuing care services typically uses current utilization patterns and population aging. Accurately assessing this need is much more complex since disability patterns among the elderly are changing and availability of caregivers is affected by changes in family structure. This paper projects annual growth rates between 2001-2031 in the need for informal and formal support among elderly Canadians and discusses the policy implications of the increasing demand for informal caregivers. Using Statistics Canada's LifePaths micro-simulation model, these projections incorporate disability rates and the potential availability of informal caregivers. The authors conclude that continued focus on family to meet the needs of elderly Canadians without increased support is not sustainable in the long term. New strategies to support Canadian caregivers are proposed and their economic feasibility in the public and private markets are evaluated (abstract from p. 4 of report).
Differentiation among types of intimate partner violence: research update and implications for interventions
Kelly, Joan B, & Johnson, M P.
(2008)
A growing body of empirical research has demonstrated that intimate partner violence is not a unitary phenomenon and that types of domestic violence can be differentiated with respect to partner dynamics, context, and consequences. Four patterns of violence are described: Coercive Controlling Violence, Violent Resistance, Situational Couple Violence, and Separation-Instigated Violence. The controversial matter of gender symmetry and asymmetry in intimate partner violence is discussed in terms of sampling differences and methodological limitations. Implications of differentiation among types of domestic violence include the need for improved screening measures and procedures in civil, family, and criminal court and the possibility of better decision making, appropriate sanctions, and more effective treatment programs tailored to the characteristics of different types of partner violence. In family court, reliable differentiation should provide the basis for determining what safeguards are necessary and what types of parenting plans are appropriate to ensure healthy outcomes for children and parent–child relationships.
Do Young Carers Deserve Justice? Young Caring in the Context of Illness
Sahoo, R., & Suar, D.
(2009)
Though there is a lot of discussion on carers' issue, young caring is still ignored and many facts remain unknown to us, which need to be revealed. Children or young people who provide continuous care for ill or disabled parents, siblings or any other family members are young carers. This raises several issues related to justice in the context of the young. Caring has its rewards and difficulties. This paper reviews the literature on informal caregiving for ill family members in order to explore caring concept in children's mind and how young caring varies with age, sex, types of illness and different family situations from the perspective of children and parents. Causes and consequences of young caring have been explored. Agenda for future research is suggested.
Does grief counseling work?
Jordan, J.R. & Neimeyer, R.A.
(2003)
Most bereavement caregivers accept as a truism that their interventions are helpful. However, an examination of the bereavement intervention literature suggests that the scientific basis for accepting the efficacy of grief counseling may be quite weak. This article summarizes the findings of four recent qualitative and quantitative reviews of the bereavement intervention literature. It then discusses three possible explanations for these surprising findings and concludes with recommendations for both researchers and clinicians in thanatology that could help to focus efforts to answer the questions of when and for whom grief counseling is helpful.
Does individual treatment for alcoholic fathers benefit their children? A longitudinal assessment
Andreas JB, O'Farrell TJ, Fals-Stewart W.
(2006)
Psychosocial adjustment in children of alcoholics (COAs; N = 125) was examined before and at 3 follow-ups in the 15 months after their fathers entered alcoholism treatment. Before their fathers' treatment, COAs exhibited greater overall and clinical-level symptomatology than children from the demographically matched comparison sample, but they improved significantly following their fathers' treatment. Children of stably remitted fathers were similar to their demographic counterparts from the comparison sample and had fewer adjustment problems than children of relapsed fathers, even after accounting for children's baseline adjustment. Thus, COAs' adjustment improved when their fathers received treatment for alcoholism, and fathers' recovery from alcoholism was associated with clinically significant reductions in child problems. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Doktorn kunde inte riktigt laga mig : barn om sjukdom och funktionshinder och om hur vi kan hjälpa
Renlund, Christina
(2007)
Den här boken handlar om små barn som har svåra sjukdomar eller funktionsnedsättningar. Vad betyder det för ett litet barn att inte kunna gå och springa, att inte kunna se, att ha trassliga och krångliga tankar, att vara annorlunda? Christina Renlund visar hur vi kan hjälpa barnen att våga berätta om sina tankar och komma med sina frågor.
Du får väl säga som det är
Renlund Christina
(2017)
Du får väl säga som det är handlar om att vara anhörig och leva nära. Om vårt behov av varandra, om sårbarhet och kraft, om mod och rädsla och om hopp och stora livsfrågor. Det är också en bok om stolthet, tillit, livsglädje och drömmar och om de mirakel som finns i vardagen nära dem vi älskar, om de små miraklen och de stora. Vad vi kan få om vi förmår ta emot.
Föräldrars berättelser. Syskons uppväxt och frågor. Mor- och farföräldras oro och stolthet. Mostrar, fastrar, morbröder och andra närstående. De skriver om kärleken och sorgen, om vardagen, den sällsynta diagnosen och funktionsnedsättningen, om sina tankar och om det som är allra viktigast i livet - relationer, människovärde och mening.
Alla ger de oss något av det finaste de har - sin berättelse. Det är enkelt, det är vardagligt , det är storslaget. Det är en bok om vad det är att vara människa.
Skribenter: Siri Ambjörnsson, Nathalie Besèr, Zenzi Brydolf, Kristina Colliander, Axel Danielson, Frank Ekelund, Miriam Ennefors, Per Feltzin, Pernilla Glaser, Ingrid Hellegren, Imke Janoschek, Håkan Johansson, Jesper Larsson, Kristina Lindh, Gunilla Malm, Anna och Mikael Nordmark, Helene Näslund, Erika Ohlsson, Alexander Persson, Giuseppe Pozzi och Åsa Llinares Norlin, Gunnar Skarland, Arziv Suhak, Kristina och Thomas Taylor, Fredrik Westin
Du´er utviklingshemmede som foreldre?
Faureholm, Jytte
(1994)
Early understanding and production of graphic symbols
Callaghan, T. C.
(1999)
Young children's ability to understand and produce graphic symbols within an environment of social communication was investigated in two experiments. Children aged 2, 3, and 4 years produced graphic symbols of simple objects on their own, used them in a social communicative game, and responded to experimenter's symbols. In Experiment 1 (N = 48), 2-year-olds did not effectively produce symbols or use the experimenter's symbols in the choice task, whereas 3- and 4-year-olds improved their drawings following the game and performed above chance with the experimenter's symbols. Ability to produce an effective graphic symbol was correlated with success on a task that measured understanding of the experimenter's symbols, supporting the claim that children's ability to produce a graphic symbol rests on the understanding of the symbolic function of pictures. In Experiment 2, 32 children aged 3 and 4 years improved their third set of drawings when they received feedback that their drawings were not effective communications. The results suggest that production and understanding of graphic symbols can be facilitated by the same social factors that improve verbal symbolic abilities, thereby raising the question of domain specificity in symbolic development.
Early Violence Exposure and Self-Regulatory Development: A Bioecological Systems Perspective
McCoy, D. C.
(2013)
Each year, thousands of American children are exposed to violence in their homes and communities. Although research in multiple fields has shown this violence to have severe and negative consequences for children's self-regulation, this work lacks a unified theoretical orientation that sufficiently captures the complexity of these relationships. Using a bioecological systems framework, the present article presents a multidimensional model of the relationship between children's exposure to violence and their self-regulatory development. Specifically, this model considers: (a) different dimensions of exposure (including chronicity, pervasiveness, and proximity); (b) child- and family-level mediating mechanisms (including biological stress-response systems and parenting); (c) the transactional, multidirectional nature of these relationships; and (d) the ways in which individual and environmental factors may contribute to multifinality. Finally, the present article also proposes a number of methodological and conceptual suggestions for strengthening future research in the area of violence, self-regulation, and psychosocial risk.
Easy targets: a disability rights perspective on the ‘children as carers’ debate
Keith, L., & Morris, J.
(1995)
This article looks at how the children of disabled parents are being defined as 'young carers', arguing that the way in which this is hap pening undermines both the rights of children and the rights of disabled people, Analysis of the social construction of 'children as carers' illustrates that researchers and pressure groups are colluding with the government's insistence that 'care in the community' must mean 'care by the community'.
Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial
Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM
(2015)
BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.
Effectiveness of telecare in elderly populations - A comparison of three settings
Onor, M. L., Trevisiol, M., Urciuoli, O., Misan, S., Bertossi, F., Tirone, G., et al.
(2008)
The primary aim of this study was to assess the level of satisfaction with 3 types of formal care systems of the elderly: (1) a day care center, (2) a nursing home, and (3) telecare service in a group of oldest frail elderly, and to describe the characteristics of the population using the services. The study involved a population of 162 oldest elderly using 3 different types of formal care services. Study participants were asked to complete a questionnaire, investigating socio-demographic characteristics and degree of overall satisfaction with the service, as well as eliciting possible suggestions for improvement. In our study, nearly all subjects using the telecare service were satisfied or very satisfied (98.5%), as compared to 75.3% of those residing in a nursing home, and 76.5% of those attending the day care center. This result confirms the findings of previous studies on elderly subjects satisfaction with telecare services. Telecare, therefore, seems to be the service achieving the greatest levels of satisfaction, a service that can also be used by low-income subjects, by whom it is also perceived as a source of social support.
Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome
Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y.
(2013)
This project was supported, in part, by Early Childhood Special Education Doctoral Leadership Training Grant H325D070075 and KIDTALK TACTICS Model Demonstration Center on Early Childhood Language Intervention Grant H326M070004.
PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).
MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.
ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.
ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.
Efficacy trial of a brief cognitivebehavioral depression prevention program for high-risk adolescents: effects at 1- and 2-year follow-up
Stice, E., Rohde, P., Gau, J. & Wade, E.
(2010)
Abstract
OBJECTIVE:
To evaluate the effects of a brief group cognitive-behavioral (CB) depression prevention program for high-risk adolescents with elevated depressive symptoms at 1- and 2-year follow-up.
METHOD:
In this indicated prevention trial, 341 at-risk youths were randomized to a group CB intervention, group supportive expressive intervention, CB bibliotherapy, or educational brochure control condition.
RESULTS:
Significantly greater reductions in depressive symptoms were shown by group CB participants relative to brochure control participants by 1-year follow-up and bibliotherapy participants by 1- and 2-year follow-up but not relative to supportive expressive participants. Supportive expressive participants showed greater symptom reduction than CB bibliotherapy participants did at 2-year follow-up. Risk for onset of major or minor depression over the 2-year follow-up was significantly lower for group CB participants (14%; odds ratio = 2.2) and CB bibliotherapy participants (3%; odds ratio = 8.1) than for brochure controls (23%).
CONCLUSIONS:
Results indicate that this group CB intervention reduces initial symptoms and risk for future depressive episodes, although both supportive expressive therapy and CB bibliotherapy also produce intervention effects that persist long term. Indeed, CB bibliotherapy emerged as the least expensive method of reducing risk for future episodes of depression.
Emanuel Miller lecture: Confusions and controversies about Asperger syndrome
Frith, Uta
(2004)
BACKGROUND:
Hans Asperger drew attention to individuals who show the core symptoms of autism in the presence of high verbal intelligence.
METHODS:
A review of the literature explores current issues concerning the diagnosis and nature of Asperger syndrome.
RESULTS:
The behavioural and neurophysiological evidence to date suggests that Asperger syndrome is a variant of autism typically occurring in high-functioning individuals, and not a separate disorder. One of the problems of diagnosis is that the typical impairment of social communication may be difficult to identify in early childhood, and can be camouflaged in adulthood by compensatory learning. The range and nature of the social impairments in Asperger syndrome are still in need of investigation, but appear to be less severe than in autism. Experimental evidence suggests that individuals with Asperger syndrome may lack an intuitive theory of mind (mentalising), but may be able to acquire an explicit theory of mind. Brain imaging studies pinpoint a network that links medial prefrontal and temporal cortex as the neural substrate of intuitive mentalising. This network shows reduced activation and poor connectivity in Asperger syndrome. While some individuals with Asperger syndrome have written eloquently about their lives, their ability to talk about their own emotions appears to be impaired (alexithymia). This impairment may be linked to depression and anxiety, which is common in adulthood. Little is as yet known about the often considerable cognitive strengths in Asperger syndrome, or about the difficulties observed in higher-level executive skills.
CONCLUSIONS:
Studies are needed that define the developmental course of the disorder and the nature of the strengths and weaknesses in both social and non-social domains. This requires more sensitive assessment instruments than are currently available. Questions about the prevalence of Asperger syndrome, about associated and secondary features, and about optimal education and management, urgently call for such studies.
Engagement in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development
Axelsson AK, Granlund M, Wilder J.
(2013)
BACKGROUND:
Participation is known to be of great importance for children's development and emotional well-being as well as for their families. In the International Classification of Functioning, Disability and Health - Children and Youth version participation is defined as a person's 'involvement in a life situation'. Engagement is closely related to involvement and can be seen as expressions of involvement or degree of involvement within a situation. This study focuses on children's engagement in family activities; one group of families with a child with profound intellectual and multiple disabilities (PIMD) and one group of families with children with typical development (TD) were compared.
METHODS:
A descriptive study using questionnaires. Analyses were mainly performed by using Mann-Whitney U-test and Spearman's rank correlation test.
RESULTS:
Engagement in family activities differed in the two groups of children. The children with PIMD had a lower level of engagement in most family activities even though the activities that engaged the children to a higher or lesser extent were the same in both groups. Child engagement was found to correlate with family characteristics mostly in the children with TD and in the children with PIMD only negative correlations occurred. In the children with PIMD child engagement correlated with cognition in a high number of listed family activities and the children had a low engagement in routines in spite of these being frequently occurring activities.
CONCLUSIONS:
Level of engagement in family activities in the group of children with PIMD was lower compared with that in the group of children with TD. Families with a child with PIMD spend much time and effort to adapt family living patterns to the child's functioning.
Engagerade medborgare blir allt fler : Allt fler hjälper en nära anhörig eller en granne : Det informella obetalda hjälparbetet har ökat de senaste fjorton åren visar olika studier : Tema : Att vara anhörig.
Raune, I.
(2006)
Evaluation of a Swedish version of the Strengthening Families Programme
Skärstrand E, Sundell K, Andréasson S.
(2014)
BACKGROUND:
Adolescents' alcohol consumption is a public health concern in Sweden as well as in many other countries. Underage drinking is associated with increased risks of alcohol-related injuries, risky sexual behaviours and dependence later in life. Different strategies have been used in the effort to prevent this behaviour, and to postpone the onset of alcohol. The Strengthening Families Programme 10-14 (SFP 10-14) from the USA has been highlighted as one of the more effective prevention programmes. The aim of the present article was to evaluate the effectiveness of a culturally adapted Swedish version of the SFP 10-14.
METHODS:
This was a cluster randomized controlled trial including 587 sixth-grade students (age 12) and their parents in 19 elementary schools in Stockholm. Schools were randomly assigned to either control (9 schools, 216 students) or to the family skills training intervention (10 schools, 371 students). The SFP Swedish version consisted of two parts with seven and five sessions, respectively, held separately for youths and parents except two joint family sessions. Measures of students' self-reported episodes of drunkenness, smoking, illicit drug use and other norm-breaking behaviours were collected at baseline (March 2003) and at three subsequent yearly surveys. Data were analysed using multilevel models with an intention-to-treat approach.
RESULTS:
No preventive effects were found for smoking, alcohol and illicit drug use and other norm-breaking behaviours, nor did moderators affect the outcome.
CONCLUSION:
The Swedish version of the SFP 10-14 was not effective in preventing youths' substance use in a Swedish context.
Evaluation of a therapeutic residential intervention for traumatically bereaved children and young people
Trickey, D. & Nugus, D.
(2011)
ABSTRACT Child bereavement interventions are rarely subjected to rigorous evaluation, so there is scant evidence in the literature to support their efficacy. This article reports the evaluation of a residential group programme developed by the UK charity Winston's Wish for children and young people and their parents/carers bereaved in traumatic circumstances (murder or manslaughter). A number of validated psychometric measures were taken pre- and post-intervention, and the results indicated positive outcomes for participants. Further research is needed to shed more light on which aspects of bereavement interventions are effective for which children and young people. However, the study does demonstrate that it is possible to conduct scientifically objective and rigorous evaluations of bereavement work with children and young people.
Everyday activity settings, natural learning environments, and early intervention practices
Dunst CJ, Bruder MB, Trivette CM, Hamby DW.
(2006)
Findings from two studies examining the parent and child outcomes associated with different ways of conceptualizing natural learning environment early intervention practices are presented. One sample in each study was asked to indicate the extent to which early intervention practitioners implemented their interventions in everyday family or community activities, and one sample in each study was asked to indicate the extent to which everyday family or community activities were used as sources of child learning opportunities. Results from both studies showed that using everyday activities as sources of children's learning opportunities were associated with positive benefits, whereas practitioners' implementing their interventions in everyday activities showed little or no positive benefits, and in several cases, had negative consequences. Results are discussed in terms of the need to carefully consider how and in what manner natural learning environment practices are operationalized by early intervention practitioners.
Everyday Life Situations of School-aged Children with Severe Disabilities: What are the goals for the future? An exploratory study.
Adolfsson M, Westerberg C, Möller K.
(2014)
This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure
environments for a group of school-aged children with severe disabilities, including complex disorders and a combination
of disabilities. The purpose was to explore universal ELS; clarify how the children can be supported in their development
of autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all
reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version
(ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and
participation in school or work were of highest importance, but few reported ELS involved directly interacting with other
children. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore,
interventions would be focused on the overall goal that children with severe disabilities take initiatives to become
independent and to form relationships with others.
Exit and Voice. An Investigation of Care Service Users in Austria, Belgium, Italy and Northern Ireland
Egger de Campo M.
(2007)
The past decades have seen an introduction of market elements in the provision of social care services (Finer 1999; Mabbett and Bolderson 1999). Welfare state reforms all over Europe have produced welfare pluralism and claims that the increased choice will enhance user participation, promote older persons' autonomy, and improve the quality of services. Within the Fifth FP Research Project CARMA (Care for the Aged at Risk of Marginalization) a case study among users of care services in Austria, Belgium, Italy, and Northern Ireland was conducted that focussed on friction and conflict between clients and service providers and investigated the reasons for discharge and denial of admission to a service. The data from this study can be interpreted in terms of Hirschman's (Exit, voice, and loyalty: responses to decline in firms, organizations, and states. Harvard University Press, Cambridge, 1970) theory on 'exit' and 'voice' as expressions of consumers' dissatisfaction with the quality of a product. Data were collected in different systems offering a variety of procedures for exit from one provider and the choice of a competitor. Also different practices of handling voice i.e., complaints have been documented. The paper questions to what extent various possibilities for exit and voice can enhance users' autonomy and increase the quality of the service supply. It thus contributes empirical findings to a debate that often emphasizes ideological arguments.
Exploring the impact of parental post-traumatic stress disorder on military family children: A review of the literature
King, N., & Smith, A.
(2016)
OBJECTIVES:
The number of UK service personnel who have a diagnosis of PTSD is unclear, but there has been a recent increase in referrals to services for PTSD symptomology. It is imperative to understand the impact this may have on the children of affected service families. This review of literature aimed to explore and provide insight into the experiences of services children whose parent has a diagnosis of PTSD.
DESIGN:
A comprehensive review of the literature.
DATA SOURCES:
Online databases CINAHL, MEDLINE, psychARTICLES, The Psychology and Behavioural Sciences Collection and PILOTS were searched.
REVIEW METHODS:
The studies were chosen in keeping with a specified inclusion and exclusion criteria. The literature was critically analysed and key themes identified through the strategy of thematic analysis.
RESULTS:
Five studies met the inclusion criteria. Three key themes were identified from the five articles; secondary traumatisation; impact on the child's mental health; and impact on the child's adult relationships.
CONCLUSION:
The findings highlighted the prevalence of secondary traumatisation and a potential negative impact on the child's mental health and relationships. However, literature used in the review was conducted in countries outside of the UK, therefore the comparison of results may be compromised. This review identifies the paucity of research on this topic and highlights the need for UK based research to be carried out in this area.
Exposure to family violence in young at-risk children: A longitudinal look at the effects of victimization and witnessed physical and psychological aggression
Litrownik, A. J., Newton, R., Hunter, W. M., English, D., & Everson, M. D.
(2003)
This study examines the contribution of specific types of family violence exposure (e.g., victim vs. witness; physical vs. psychological) to aggressive and anxious/depressed problem behaviors in young (i.e., 6-year-old) at-risk children. This multisite prospective study of 682 children from four different regions of the country asked mothers and their 6-year-old children to report on violence exposure in their families. After controlling for mother reports of child problem behaviors on the Child Behavior Checklist at Age 4, it was found that subsequent exposure to family violence predicted reported problem behaviors at Age 6. Although mothers' report of child victimization predicted subsequent problem behaviors, witnessed violence was related to these problems only when both mothers and children reported its occurrence. The results of this study suggest that even though there was a relationship between witnessed and directly experienced family violence, both had independent, noninteractive effects on subsequent behavior problems.
Externalizing Outcomes of Youth with and without ADHD: Time-Varying Prediction by Parental ADHD and Mediated Effects
Moroney, E., Tung, I., Brammer, W. A., Peris, T. S., & Lee, S. S.
(2016)
Although parental attention-deficit/hyperactivity disorder (ADHD) is a risk factor for multiple negative youth outcomes, it is unknown how change in parental ADHD symptoms over time affects change in child ADHD symptoms; moreover, mediators of these predictions are largely unknown. Parents of 230 5-10 year-old children (68 % male) with (n = 120) and without ADHD (n = 110) were followed prospectively for 6-7 years across three separate waves. Parents self-reported their ADHD and depression symptoms and similarly rated offspring ADHD, oppositional defiant disorder (ODD), and conduct disorder (CD) symptoms; youth self-reported their substance use. Temporally-ordered mediators consisted of parental expressed emotion (EE), derived from the Five Minute Speech Sample, and self-reported positive and negative parenting behavior. Controlling for key demographics and parental depression symptoms, increasing parental ADHD symptoms were a time-varying predictor of worsening youth ADHD and ODD, although it was unrelated to change in CD and alcohol/substance use. Next, although EE facets (i.e., criticism, emotional over-involvement) did not mediate these predictions, negative parenting behavior significantly mediated predictions of youth ADHD (and marginally in predictions of ODD) from parental ADHD symptoms. These quasi-experimental findings suggest that parental ADHD symptoms are a potential unique causal risk factor for offspring ADHD and ODD; also, preventing negative parenting behavior secondary to parental ADHD symptoms is critical to improve trajectories of youth ADHD and ODD. We consider parental ADHD symptoms and family factors underlying emergent externalizing problems utilizing a developmental psychopathology framework, including implications for intervention and prevention.
Facilitators and barriers for co-ordinated multi-agency services
Sloper, P.
(2004)
Background Greater collaboration between agencies and the need to improve interagency working is a key policy priority. The lack of co-ordinated multi-agency working in children's services has been highlighted in many research studies. Evidence on the facilitators of and barriers to such working and the outcomes for children and families of co-ordinated services is important to inform local developments.
Methods Literature on multi-agency working was reviewed as part of the evidence gathering to inform the Children's National Service Framework. Searches were mainly concentrated on existing reviews, plus recent studies which included children's services and were not covered by the reviews obtained.
Results There is little evidence on the effectiveness of multi-agency working itself or of different models of such working in producing improved outcomes for children and families. However, reviews of evidence on multi-agency working provide consistent findings on facilitators and barriers, including: clear aims, roles and responsibilities and timetables that are agreed between partners; a multi-agency steering group, commitment at all levels of the organizations involved and good systems of communication and information sharing, including IT systems, are central; support and training for staff in new ways of working is needed. There is some evidence that interprofessional programmes of continuing education can help to remove barriers to joint working.
Conclusions Existing research provides useful information for organizations developing multi-agency services. However, there is a need for methodologically sound research which investigates the outcomes of different models of multi-agency working in services for children, includes assessment of cost effectiveness, and explores the ways in which the factors identified as facilitating multi-agency working relate to outcomes.
Families under the microscope: parallels between the young carers debate of the 1990s and the transformation of childhood in the late nineteenth century
Olsen, R.
(2009)
Existing analysis and discussion about young carers—children caring for ill or disabled family members—has been limited in scope, concentrating on narrow policy and service issues. In this paper, I attempt to introduce a more historical perspective to these debates, by comparing responses to the issue of young caring in the 1990s to resistance encountered in the implementation of child labour and education reforms towards the end of the nineteenth century. I discuss the parallel ways in which the quality of childhood for some children became problematised without sufficient recognition of the limited choices that some families face. Copyright © 2000 John Wiley & Sons, Ltd.
Familjerådslag i Sverige. En utvärdering av Svenska Kommunförbundets försöksverksamhet
Sundell, Knut & Haeggman, Ullalena
(1999)
Family and carer participation in mental health care: perspectives of consumers and carers in hospital and home care settings
Lakeman, Richard
(2008)
It is widely accepted that family and carer participation in adult mental health care is desirable. However, rarely is service development informed by representative opinions of both carers and service users. This study took place in the context of a larger project to introduce and evaluate practice standards relating to family participation. The aim of this paper is to explore the perceptions of service users and carers to carer participation in adult mental health services. One hundred and twenty-nine service users and 86 family members recruited via hospital and community settings completed a survey which addressed obstacles to family participation, perceived benefits of participation and areas for improvement. Many service users and family were entirely satisfied with existing levels of family participation. Different needs for information, support and the nature of participation in mental health care are highlighted in acute hospital and community settings. Across settings, the provision of support and accessing services were identified as the most useful aspects of family participation. Meaningful carer and family participation in mental health care should proceed from respectful connection with carers and be informed by need which will vary depending on setting and circumstances.
Family environmental and genetic influences on children’s future chemical dependency.
Kumpfer KL, De Marsh JP.
(1985)
This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.
Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents.
Banach M, Iudice J, Conway L, Couse LJ
(2010)
Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study measured the effects of a six-session, co-facilitated, support group on the advocacy skills and self-efficacy of parents coping with a child's diagnosis. Statistically significant increases in the average mean scores for the three subscales of the Family Empowerment Scale were found. Implications for practice and research are discussed.
Fokusgrupp Växelvård . Utveckling av anhörigstöd.
Gretener, B., Malmström, B., & Pettersson, K.
(2009)
Folkhälsorapport. Artikelnr 2009-126-71.
Socialstyrelsen
(2009)
Folkhälsorapport 2009 är den sjunde nationella rapporten och redovisar hälsans utveckling i olika befolkningsgrupper och hur den påverkats av levnadsvanor och omgivningsfaktorer. Under de senaste decennierna har hälsan förbättrats vilket avspeglar sig i att medellivslängden fortsätter att öka och ökar mer bland män än bland kvinnor. Det har också funnits en ogynnsam utveckling av folkhälsan, olika symtom på nedsatt psykiskt välbefinnande ökade kraftigt under 1990-talet utom bland de äldsta. Under 2000-talet tycks dock denna utveckling ha brutits utom bland ungdomar. De senaste uppgifterna som finns om hur befolkningen upplever sitt hälsotillstånd är från 2005 och speglar ett samhälle under högkonjunktur. Hälsotillståndet kan mycket väl ha försämrats sedan dess med tanke på den ekonomiska kris som gjort sig gällande under sista halvåret.
Medellivslängden ökar mest bland män och högutbildade
Den främsta orsaken till den ökande medellivslängden är att allt färre insjuknar i hjärt- och kärlsjukdomar och bland dem som insjuknar har dödligheten minskat kraftigt. Risken att dö i hjärtinfarkt har nära nog halverats de senaste 20 åren och risken att dö i stroke har minskat med en tredjedel. Minskad rökning samt lägre blodfetter och blodtryck gör att färre insjuknar. Bättre behandlingsmetoder har bidragit till att risken att dö i hjärtinfarkt eller stroke minskat dramatiskt för både kvinnor och män. Cancerdödligheten visar inte samma positiva utveckling: lungcancer minskar bland män men ökar alltjämt bland kvinnor och minskningen av bröstcancerdödligheten är förhållandevis liten. Skillnader i förväntad medellivslängd mellan personer med olika lång utbildning har ökat under hela 1990-talet, och fortsätter att öka under 2000- talet framför allt bland kvinnor. Det är framför allt sociala skillnader i cancerdödlighet som ökar bland kvinnor.
Förändrade levnadsvanor
Bland barn ökade övervikten kraftigt från 1980-talet till 2000-talet men nu tycks ökningen plana ut. Idag är 15-20 procent av alla barn överviktiga och 3-5 procent är feta. Barns matvanor har förbättrats, fler äter frukt och grönsaker medan konsumtionen av läsk och godis har sjunkit markant under senare år. Bland ungdomar i årskurs 9 minskar andelen rökare liksom alkoholkonsumtionen och användningen av narkotika. Ökningen av andelen vuxna med övervikt och fetma var störst på 1990-talet och ser nu ut att avstanna. I åldrarna 16-84 år är hälften av männen och nästan 40 procent av kvinnorna överviktiga eller feta. Fetma förkortar i genomsnitt livet med 6-7 år. De allra senaste åren förefaller energiintaget via maten minska för första gången på decennier. Alkoholkonsumtionen har ökat sedan början av 1990-talet och högst alkoholkonsumtion har män i åldern 20-24 år. Den alkoholrelaterade dödligheten minskar bland män i åldern 25-64 år och ökar i åldrarna över pensionsåldern. Bland kvinnor ökar alkoholdödligheten i åldrarna 65-74 år medan den varit i stort sett oförändrad i åldern 45-64 år. Narkotikadödligheten minskade på 2000-talet efter att ha ökat dramatiskt under decennier.
Hälsoutvecklingen bland ungdomar oroande
Flera olika indikatorer pekar på att psykisk ohälsa är särskilt vanligt bland yngre kvinnor men att den ökar bland båda könen. Andelen självmordsförsök ökar kraftigt bland unga kvinnor, och allt fler unga vårdas på sjukhus för depression eller ångest och för alkoholförgiftning. Under sista åren har dödligheten bland unga män ökat något till följd av en liten ökning i flera dödsorsaker, nämligen skador, alkoholrelaterade dödsorsaker och möjligen även självmord.
Hälsan är ojämnt fördelad
Hjärt- och kärlsjukdomar och diabetes är vanlig are bland lågutbildade.
Rökning minskar i alla grupper utom bland kvinnor med enbart grundskoleutbildning.
Överlevnad i bröstcancer är lägre bland kvinnor med lägre utbildning.
Svår värk och dåligt allmänt hälsotillstånd är betydligt vanligare hos arbetare än hos tjänstemän.
Ensamstående kvinnor med barn har mer besvär av värk, oftare nedsatt psykiskt välbefinnande, röker mer och överviktiga är vanligare.
Astma och födoämnesallergier är vanligare bland barn till föräldrar i lägre socialgrupper. De får dessutom allvarligare symtom av sin astma än barn i högre socialgrupper.
Tandhälsan är betydligt sämre hos socioekonomiskt svaga grupper. Många anser sig inte ha råd med den tandvård de behöver.
Ensamstående kvinnor är en våldsutsatt grupp och 15 procent av alla ensamstående kvinnor med små barn har utsatts för våld i hemmet.
Risken för våld är större bland kvinnor med fysiska och psykiska funktionshinder samt äldre med få sociala kontakter.
Våld och skador drabbar oftare barn i familjer med låga inkomster.
Det är vanligare bland lågutbildade att äldre vårdas av sina anhöriga. De som har högre utbildning köper i större utsträckning dessa tjänster.
Vissa grupper avstår oftare än andra från att hämta ut sina läkemedel: ensamstående med barn, arbetslösa, personer med sjuk- och aktivitetsersättning, personer med ekonomiskt bistånd och de som har höga avgifter för läkemedel. Ensamstående kvinnor med barn avstår i tre gånger så hög utsträckning som befolkningen i sin helhet.
Fosterbarn ur ett könsperspektiv
Andersson, G.
(2002)
Barns erfarenheter av separationer och placeringar utanför hemmet får vanligen så stor plats att de skymmer ålders och köns skillnader, vilket uppmärksammas i denna artikel. Som en del av ett större forsknings projekt granskas skillnader mellan 10-11 åriga pojkars och flickors problem.
Från psykiskt sjuk till psykiskt funktionshindrad
Hydén, Lars-Christer (red)
(2005)
Från psykiskt sjuk till psykiskt funktionshindrad belyser de förändrin gar som ägt rum inom den svenska psykiatrin sedan början av 1990-talet , med speciell tyngdpunkt på psykiatrireformen 1994 och dess konsekven ser. Denna reform har bland annat lett till att den kommunala socialtj änsten fått ett allt större ansvar för omsorgen om personer med långva riga och svåra psykiska funktionshinder. Teman som lyfts fram är försk jutningen från begreppet ?psykisk sjukdom? till ?psykiskt funktionshin der?, vår kunskap kring psykiska funktionshinder och hur drabbade pers oner hanterar dessa i sin vardag. Vidare diskuteras de nya roller som anhöriga och frivilligorganisationer fått efter avvecklingen av de gam la mentalsjukhusen; de krav på delaktighet och inflytande över det egn a livet som psykiskt funktionshindrade ställer, något som också föränd rar villkoren för dem som arbetar med dessa frågor. Boken vänder sig s peciellt till personer som utbildar sig inom vård och omsorg
Funktionshindersfrågor
Betänkande
(2013)
Föräldraskap och missbruk: att ta upp frågor om föräldraskap i missbruks- och beroendevården
Socialstyrelsen
(2012)
Genom svaren på de frågor som ställs om familjen är utredare och behandlare i missbruks- och beroendevården ibland de enda som känner till att barnen lever i en familj med missbruk. De behöver uppmärksamma barns och ungas situation, så att deras rättigheter, behov av information, råd och stöd tillgodoses.
Syftet med skriften är att underlätta för personal inom missbruks- och beroendevården att ta upp föräldraskap och samtala med föräldern om barns situation i utredning eller behandling. Den förespråkar ingen särskild modell eller metod i arbetet, utan tar upp förhållningssätt och innehåll i samtal om föräldraskap. Den tar även upp samarbetet med socialtjänstens barn- och ungdomsvård. Skriften riktar sig till utredare och behandlare inom socialtjänsten, hälso- och sjukvården samt övrig missbruks- och beroendevård, och kan också vara av intresse för socialtjänstens barn- och ungdomsvård. Den utgår ifrån situationen vid alkoholmissbruk eller -beroende, men kan i väsentliga delar också vara relevant vid föräldrars missbruk av narkotika eller läkemedel.
Föräldrastöd i Södertälje : samt tidig upptäckt av barn med normbrytande beteende : kartläggning 2008
Jonsson, E.
(2009)
apporten utgör en kartläggning av Södertäljes utbud av föräldrastöd och av det arbete som görs i kommunen för att tidigt upptäcka barn med normbrytande beteende. Resultatet visar att det finns flera områden som kommunen både kan och behöver arbeta vidare med.
Föräldrastöd i teori och praktik
Ferrer-Wreder, L., H. Stattin, Karlsson, E.
(2003)
Flertalet vetenskapliga studier har visat att det finns ett samband mellan barns och ungdomars upplevelser i familjen och utvecklingen av en kriminell livsstil. Föräldrastödjande verksamhet har blivit ett samlingsnamn för de åtgärder och projekt där föräldrar är delaktiga i arbetet med att förhindra sociala problem hos sina barn.
Gemensam problemlösning vid Alternativ och Kompletterande Kommunikation
Zachrison G, Rydeman B, Björck-Åkesson E.
(2001)
Den här skriften handlar om hur man genom samarbete kan komma fram till
vardagsfunktionella lösningar för personer med kommunikationshandikapp. Utgångspunkten
är den modell för familjemedverkan och gemensam problemlösning som utvecklats av Mats
Granlund och Eva Björck-Åkesson, här speciellt tillämpad på AKK-området. Modellen för
gemensam problemlösning har utformats och använts vid åtgärder för vuxna och barn i behov
av särskilt stöd (Granlund, 1988; Björck-Åkesson & Granlund, 2000). Den har utvärderats vid
forskningsstiftelsen ALA, Stockholm och inom forskningsprogrammet CHILD (ChildrenHealth-Intervention-Learning-Development)
vid Mälardalens Högskola. Likaså har den
använts som grund för en interventionsmodell i ett projekt kring kommunikation (KomP) på
Bräcke Östergård, Göteborg, 1995-1998, (Zachrisson, 1998). Ytterligare erfarenhet av
gemensam problemlösning kring alternativ och kompletterande kommunikation har tillförts
genom projektet "Kommunikation genom teknik – ur ett vardagsperspektiv", ett projekt i
samarbete mellan kommunikations- och dataresurscentren DART i Göteborg och DaKo i
Halmstad 1999-2001, finansierat av KFB (Vinnova).
Skriften riktar sig främst till arbetsterapeuter, logopeder, pedagoger och andra som i sitt yrke
kommer i kontakt med personer som använder eller har behov av alternativ och
kompletterande kommunikation, AKK. Syftet är att beskriva en modell för samverkan där
brukaren, de som han/hon samspelar med och experter/professionella kan mötas. Alla kan
bidra med sina olika kunskaper och erfarenheter i arbetet med att utveckla bra lösningar för
brukaren som ger henne/honom möjligheter att kommunicera i vardagen på ett
tillfredställande sätt.
En ofta förekommande fråga vid gemensam problemlösning är varför begreppet "problem"
används. Anledningen till att vi valt att använda detta begrepp är att det är generellt och kan
inbegripa olika former och nivåer av svårigheter. Det går emellertid bra att använda begrepp
som svårigheter eller frågeställningar. I praktiken pratar man ofta om svårigheter. Naturligtvis
är det viktigt att i första hand se till personens resurser och till resurser i omgivningen och
använda dessa i åtgärdsarbetet.
Gerd Zachrisson, arbetsterapeut vid kommunikations- och dataresurscentret DART i
Göteborg har tagit initiativ till skriften och har sammanställt den tillsammans med Eva
Björck-Åkesson, professor i pedagogik vid Mälardalens Högskola och Bitte Rydeman,
logoped vid dataresurscentret DaKo i Halmstad och doktorand vid Institutionen för Lingvistik
vid Göteborgs Universitet.
Halliday's Communicative-Functional Model Revisited A Case Study
Keshavarz, M. H.
(2001)
The author of this study investigated the variety of functions used by a bilingual infant to provide further evidence for the communicative-functional approach to child language acquisition, compared the development of pragmatic functions in a monolingual and a bilingual child, and devised a categorization system that can be applied to child language acquisition data by other researchers in the field. Accordingly, data collected from a Persian-English bilingual child during a period of 10 months, as part of a longitudinal study, were analyzed, and a taxonomy of pragmatic functions the participant used was established. Analysis of the data indicated that despite certain differences in the frequency and distribution of pragmatic functions the participant employed in the present study (bilingual) and those used by Halliday's monolingual child, the two studies demonstrated that both children developed pragmatic functions from a very early age. The theoretical implication of this study is that the development of pragmatic functions is a natural tendency in young children, whether monolingual or bilingual. The practical outcome of the study is a proposed categorization system that is intended to facilitate the analysis of child language acquisition data from a communicative-functional perspective.
His helping hands – adult daughter´s perceptions´ of fathers with caregiving responsibility
Eriksson, H., Sandberg, J., Holmgren, J., & Pringle, K.
(2011)
Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers "masculine authenticity", all of them appear to cherish "his helping hands" as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional 'male activities' and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.
Kvinnors position som informella vårdare har ofta tagits för givet i forskning om och socialpolitisk styrning av informell vård inom familjen i västeuropa, medan relativt få diskussioner har förts om mäns delaktighet och ansvar för densamma. Män som helt oförutsett hamnar i en situation i livet där de måste bestämma sig för om man ska ta sig an ett påtagligt vårdansvar går på många sätt bortom alla de förutsättningar som män vardagsvis har att hantera i livet. Genom att undersöka vårdande mäns insatser i sina familjer kan man lära sig en del av vad som faktiskt sker när män tar på sig ett långvarigt vårdansvar. I denna studie har vi intervjuat åtta döttrar som växt upp och/eller levt nära en pappa som under lång tid vårdat sin partner i det egna hemmet. Resultatet visar att när män har ett långvarigt vårdansvar så kommer det också något gott ur de kunskaper de fått av vårdandet i relation till de egna barnen. Alla döttrar som vi intervjuat prisar sina fäders insatser och -hans hjälpande händer- därför att det hade gett dem en närmare och mer "genuin" relation. Resultatet visar också att vårdansvaret för männen inneburit att de bryter mot rådande konventioner om vad manlighet är och på olika sätt fått hantera och betala för det priset i det offentliga livet. Ett långvarigt och påtagligt vårdansvar innebär således en transformering av sociala relationer, privat och offentligt samt att presentera ett alternativt sätt att vara man på. Avslutningsvis föreslås en mer genusbaserad förståelse och ett mer strategiskt arbets- och förhållningsätt bland professionella, i socialt och välfärdsarbete, i mötet med döttrar och andra familjemedlemmar som stödjer sina vårdande fäder.
HIV-postive mothers´ disclosure of their serostatus to their young children: A review
Murphy, D.A.
(2008)
One challenge faced by mothers living with HIV (MLWHs) is the decision about whether or not to disclose their HIV status to their young children, and how best to carry out the disclosure. Disclosure of their serostatus has emerged as one of the main concerns MLWHs have, and that decision can result in high levels of psychological distress. Concerns are exacerbated among MLWHs with younger children, due to the fact that they face additional worries, such as whether the child is old enough to understand, or will be able to keep the information confidential. A great deal of recent research—within approximately the past decade—has been conducted to investigate maternal disclosure of HIV, and the outcomes on children. This paper reviews the current state of the research literature, focusing on factors that appear to influence whether or not mothers chose to disclose; characteristics of children who have been made aware of their mothers' serostatus relative to children who remain unaware; factors that appear to influence children's reactions to maternal disclosure; and implications of this research as well as future research directions.
I första hand kvinna
Sjöberg, Malena
(1997)
I klyftan mellan olika världar : En kvalitativ studie: Anhörigvårdare med invandrarbakgrund berättar. C-uppsats
Ohlsson, J., & Grapenhielm, R.
(2007)
I nöd och lust : Att vara närstående till en person med demenssjukdom. (C-uppsats)
Dessner, E-l. & Leijon, S.
(2007)
I vems händer? Om arbete, genus, åldrande och omsorg i tre EU-länder
Stark, A. and Å. Regnér
(2001)
Identifying adult children of alcoholics: methodological review and a comparison of the CAST-6 with other methods
Hodgins, DC., & Shimp, L.
(1995)
Methods of identifying adult children of alcoholics are described and their psychometric properties are reviewed. These methods include self-report single questions and questionnaires and interview schedules. The CAST-6, a shortened version of the Children of Alcoholics Screening Test, is compared with a variety of these methods. The CAST-6 is confirmed as a useful brief screening measure. It was shown to be internally reliable, have good retest reliability and to agree well with other measures. Using a face to face interview as the comparison standard, however, a number of single questions performed equally as well as the CAST-6 and other more complex methods.
Identifying and responding to the mental health service needs of children who have experienced violence: a community-based approach
Drotar, D., Flannery, D. J., Day, E, Friedman, S., Creeden, R., Gartland, H., . . . McTaggart, M.J.
(2003)
Children's exposure to violence, their psychological response to the violence, and their participation in a community-based intervention service were described. This article describes the provision of mental health services and the process evaluation for the initial phase of the program (1999-2000). A large number (N = 1739) children were referred to the program over a 17.5-month period for mental health intervention immediately after witnessing and experiencing a range of violent acts, the majority of which (N = 1355) involved domestic violence. A majority of referred children and adolescents (N = 946) directly witnessed such violence, and the majority of those who were old enough to provide self-report indicated that they perceived the event as a direct threat to their safety. Many of these children and adolescents also reported high levels of trauma symptoms. The majority of children (N = 1117) who were referred to the program participated. The findings underscore the feasibility of developing mental health services to meet the needs of children who are exposed to violence, especially family violence, at a critical time following violence exposure.
Implementing child-focused family nursing into routine in adult psychiatric practice: Hindering factors evaluated by nurses
Korhonen T, Vehviläinen-Julkunen K, Pietilä A-M.
(2008)
Keywords:
child;family nursing;family nursing interventions;psychiatric nursing
Aims and objectives. The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.
Background. There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.
Design and methods. Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.
Results. Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.
Conclusion. To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.
Relevance to clinical practice. The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.
Improving family functioning and child outcome in methadone maintained families: the Parents Under Pressure programme.
Dawe S, Harnett PH, Rendalls V, Staiger P.
(2003)
Twelve families responded to posters displayed in a methadone clinic for inclusion in a pilot study assessing the viability and potential utility of an intensive, multi-component family-focused intervention, the Parents Under Pressure programme. The programme was designed to improve child behaviour, decrease parental stress and improve family functioning in methadone-maintained families by targeting affect regulation, mood, views of self as a parent, drug use and parenting skills. Nine of the families completed the programme delivered in their homes; eight were recontacted at 3 months. Each family reported significant improvements in three domains: parental functioning, parent-child relationship and parental substance use and risk behaviour. In addition to the changes in family functioning, the majority of families reported a decrease in concurrent alcohol use, HIV risk-taking behaviour and maintenance dose of methadone. The families reported high levels of satisfaction with the programme. It is recommended that future studies include independent measures (e.g. behavioural observations) of child outcome and parental functioning. The results were optimistic and provided the impetus to evaluate the treatment programme using a randomized controlled trial.
Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife
Dentinger E, Clarkberg M.
(2002)
Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.
Informal home caregiving in a gender perspective: A selected literature review
Lundqvist, F.
(2006)
Informella hjälpgivare
Szebehely M.
(2006)
Innvandring og innvandrere 2002. Statistiske analyser nr 50
Lie, B.
(2002)
Insatser för barn och unga
Socialstyrelsen
(1998)
Inte bara Anna : asperger och stress
von Zeipel Elisabet, Alm Kerstin
(2015)
Många hade försökt förstå sig på Anna. Men hon hann bli femton år innan någon förstod att hon hade Aspergers syndrom. Att leva med asperger kan vara påfrestande och man stöter på fler hinder i vardagen än andra. Det kan leda till stress och så småningom utbrändhet. Och Anna är långtifrån ensam om sina upplevelser. När Anna var sjutton år kom hon till sist inte iväg till skolan. Här börjar författaren Elisabet von Zeipel och Anna en spännande "resa" som vi får följa med på.
Det här är en fackbok i berättelsens form. Anna har farit illa men trots det är det en hoppfull bok. Utbrändhet kan förebyggas när vi sänker stressen för personer med asperger.
Intentional communication acts expressed by children with severe disabilities in high-rate contexts
Bruce, S. M., & Vargas, C.
(2007)
The purpose of this study was to identify the rates of communication expressed by 17 children with severe disabilities in high-rate school contexts while piloting a new coding system for intentional communication acts (ICAs). The following nine characteristics were used when coding ICAs expressed in both child initiated and adult initiated communicative interactions: joint attention, form of communication, use of pause, persistence, repetition, repair, expression of pleasure or displeasure when understood or misunderstood, expression of pleasure or displeasure to communication partner's message, and evidence of comprehension. Children communicated 1.7 - 8.0 ICAs per minute in the highest rate contexts. Nine of the 34 high-rate contexts were speech clinical sessions, six were activities that included eating, 30 were familiar activities, and four were novel activities.
Interaction between adult patients’ family members and nursing staff on a hospital ward
Åstedt-Kurki, Päivi, Paavilainen, Eija, Tammentie, Tarja, Paunonen-Ilmonen, Marita
(2001)
The purpose of this study was to generate knowledge of the interaction between an adult patient's family members and nursing staff from the staff's perspective.
Data were collected from nursing staff (n=155) working on the wards and out-patient departments for pulmonary, rheumatic, neurological and gastroenterological diseases at a university hospital by using a new questionnaire based on earlier research and the literature. The questions explored the staff's views of interaction with the adult patient's family members. In this study, interaction is seen as an umbrella concept which encompasses giving information to relatives, discussion, contacts between staff and significant others and working together. The instrument included questions about personal and telephone discussions, the provision of written instructions and factors facilitating and complicating interaction. The response rate was 55%. The data were analysed using SPSS software and examined using frequency and percentage distributions and cross-tabulation. The open-ended questions were analysed using qualitative content analysis by reducing, grouping and abstracting the data inductively.
Discussions with relatives while they visited the patient in hospital were the commonest form of interaction. The majority of respondents perceived the interaction with the patient and knowing his or her family members as important. Less than one-fourth of the respondents started discussion with family members, while the majority expected family members to initiate interaction. The majority of respondents perceived the patient's presence in discussion as important, but sometimes they thought it was necessary to discuss with family members without the patient. The staff discussed with family members mainly in the ward office or in patient rooms, which were, however, not perceived as peaceful. Discussions primarily pertained to the patient's condition, discharge from hospital and planning of continued treatment.
Interdisciplinary Studies of Childhood Ethics: Developing a New Field of Inquiry
Carnevale, F. A., Campbell, A., Collin-Vezina, D., & Macdonald, M. E.
(2013)
The principal aim of this investigation was to help develop 'Interdisciplinary Studies of Childhood Ethics' as a new field of inquiry. We identified: (i) current intra-disciplinary and interdisciplinary knowledge gaps in childhood ethics; and (ii) priorities for future research and development. A prominent problem, highlighted within and across disciplines, relates to how the best interests standard should be reconciled with the recognition of children as agents. This project makes an innovative contribution by promoting the development of interdisciplinary childhood ethics knowledge and standards, informing future improvements in childhood research and services.
International migration, immobility and development. Multidisciplinary perspectives
Hammar T, Brochmann G, Tamas K, Faist T.
(1997)
Internet-based parent management training: A randomized controlled study
Enebrink, P., Högström, J., Forster, M., & Ghaderi, A.
(2012)
OBJECTIVE:
The current study evaluated the efficacy of an Internet-based parent-training program for children with conduct problems. Dose-response ratio and costs for the program were also considered.
METHOD:
Parents of 104 children (aged 3-12 years) were randomly allocated to either parent training or a waitlist control condition. Diagnostic assessment was conducted at baseline and parent ratings of child externalizing behaviors and parent strategies were completed before and after treatment and at 6-month follow-up.
RESULTS:
At post-treatment assessment, children whose parent(s) had received the intervention showed a greater reduction in conduct problems compared to the waitlist children. Between group intent-to-treat effect sizes (Cohen's d) on the Eyberg Intensity and Problem scales were .42 and .72, respectively (study completers .66 and 1.08). In addition, parents in the intervention group reported less use of harsh and inconsistent discipline after the treatment, as well as more positive praise. Effects on behavior problems were maintained at 6-month follow-up.
CONCLUSIONS:
The results support the efficacy of parent training, administered through Internet, with outcomes comparable to many of the group-based parent training programs. The efficacy, low cost, and higher accessibility make this intervention a fitting part in a stepped-care model.
Interpersonal interactions and relationships (D710-D799).
Bailey SN, Lach LM, Byford-Richardson K.
(2012)
Measures for children with developmental disabilities: an ICF-CY approach. Annette Majnemer, ed. Mac Keith Press, 2012. 150.00 [pound sterling]. 552pp. ISBN: 978-1-908316-45-5 I highly recommend this book: Professor Majnemer has brought together a wide range of outcome measurement experts creating a thoughtfully crafted book, essential reading for anyone selecting outcome measures for use with children and youth with developmental disabilities. The book is framed by the components.
Interplay between formal and informal care of older people
Kröger T.
(2005)
Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice
Stover, C. S., Meadows, A. L., & Kaufman, J.
(2009)
The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].
Into adulthood: a follow-up study of 718 young people who were placed in out-of-home care during their teens
Vinnerljung B, Sallnäs M.
(2008)
In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.
Intresseorganisering och självhjälp
Meeuwisse, Anne
(2005)
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.
Redmond, B., & Richardson, V.
(2003)
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability.
Redmond, B., & Richardson, V.
(2003)
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Kan utbildning för anhörigvårdare vara ett stöd att hantera vardagen?
Renblad, K.
(2007)
Att hantera vardagen - en utbildning som stöd för anhörigvårdare, ÄO FoU-rapport 2007:1. E. Johansson and K. Renblad
Keeping the family balance – adult daughters´ experiences of roles and strategies when supporting caring fathers
Sandberg, J., Eriksson, H., Holmgren, J., & Pringle, K.
(2016)
The Scandinavian countries represent a progressive approach to gender equality and transitions of traditional gender roles but little attention has been paid to gender equality in old age and how normative constructions of gender intersect in the lives of family carers. The aim of this study was to understand how adult daughters experience their roles and strategies when supporting fathers caring for an ill mother. A sample of eight daughters shared their experiences through in-depth interviews. The findings show that the daughters provide substantial and crucial effort and are intimately involved in the caring for their father and the sole contributors towards the emotional support of their fathers. They tend to devote a lot of energy towards picturing their family as 'normal' in terms of the family members adopting traditional roles and activities inside as well as outside the family context. In conclusion, the lack of understanding about gender as a 'norm producer' is something that needs to be further elaborated upon in order for professionals to encounter norm-breaking behaviours. The daughters' position as family carers is often assumed and taken for granted since the intersecting structures that impact on the situations of the daughters are largely invisible.
De skandinaviska länderna representerar en progressiv syn på jämställdhet och förändringar av traditionella könsroller, men lite uppmärksamhet har riktats mot jämställdhet i hög ålder och vad som händer när normativa genuskonstruktioner möter erfarenheter hos äldre anhörigvårdare. Syftet med denna studie var att förstå hur vuxna döttrar erfar sina roller och strategier när de stödjer fäder som tar hand om en sjuk mor. Ett urval av åtta döttrar delade sina erfarenheter i djupintervjuer. Resultaten visar att döttrar ger betydande insatser och är intimt involverade i att ta hand om sin far och är den enda bidragsgivare av emotionellt stöd till sina fäder. Döttrarna ägnar stor energi att framställa familjesituationen som 'normal' genom att anta traditionella roller och verksamheter såväl inom som utanför familjen. Förståelse för genus som normskapare är något som måste beforskas ytterligare för att yrkesverksamma ska kunna möta normbrytande beteenden. Döttrars position som anhörigvårdare tas ofta förgiven eftersom de intersektionella strukturer som påverkar döttrar till vårdande fäder i stort sett är osynliga.
Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?
Sloper, P., Greco, V., Beecham, J., & Webb, R.
(2006)
Background Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families.
Methods A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need).
Results The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need.
Conclusions Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.
Lag om rätt till ledighet av trängande familjeskäl
SFS
(1998)
En arbetstagare har rätt till ledighet från sin anställning av trängande familjeskäl som har samband med sjukdom eller olycksfall och som gör arbetstagarens omedelbara närvaro absolut nödvändig
Learning How to Mean--Explorations in the Development of Language
Halliday, M. A. K
(1975)
Liggande dans : en metodguide i att starta en grupp för personer med flerfunktionsnedsättning
Hagström, Kerstin
(2011)
Lived experiences of being a father of an adult child with Schizofrenia
Nyström M, Svensson H.
(2004)
The aim of this study is to analyze and describe lived experiences of being a father of an adult child with schizophrenia. Interpretations of interviews with seven Swedish fathers of sons or daughters with schizophrenia revealed a pattern of gradually changing existential consequences. After an initial period of shock when receiving the diagnosis, a long struggle to regain control follows. The findings are presented in a structure based on eight different aspects of this struggle, which seems to be characterized by a balance between grieving and adaptation. An important conclusion is that the fathers' life-world must be attended to in professional family interventions.
Living with Schizophrenia from the perspective of outpatients and their parents
Foldemo, Annica
(2004)
Akademisk avhandling
The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life.
Lokal modell för samordnad vård och omsorg kring personer med demenssjukdom samt stöd till deras anhöriga
Ekerö kommun
(2013)
Longitudinal mediators of a randomized prevention program effect on cortisol for youth from parentally bereaved families
Luecken, L., Hagan, M.J, Sandler, I.N., Tein, J., Ayers, T.S., & Wolchik, S.A.
(2014)
Abstract
We recently reported that a randomized controlled trial of a family-focused intervention for parentally bereaved youth predicted higher cortisol output 6 years later relative to a control group of bereaved youth (Luecken et al., Psychoneuroendocrinology 35, 785-789, 2010). The current study evaluated longitudinal mediators of the intervention effect on cortisol 6 years later. Parentally bereaved children (N = 139; mean age, 11.4; SD = 2.4; age range = 8-16 years; male; 61% Caucasian, 17% Hispanic, 7% African American, and 15% other ethnicities) were randomly assigned to the 12-week preventive intervention (n = 78) or a self-study control (n = 61) condition. Six years later (mean age, 17.5; SD, 2.4), cortisol was sampled as youth participated in a parent-child conflict interaction task. Using four waves of data across the 6 years, longitudinal mediators of the program impact on cortisol were evaluated. Program-induced increases in positive parenting, decreases in child exposure to negative life events, and lower externalizing symptoms significantly mediated the intervention effect on cortisol 6 years later.
Longitudinal Relationships between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities
Hastings, Richard, P.
(2007)
Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.
Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?
van den Heuvel ET, Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B.
(2002)
In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.
Loss and grief in patients with Schizophrenia: Onliving in another world
Mauritz M, Van Meijel B.
(2009)
AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.
Lära som vuxen.
Bron, Agnieszka & Wilhelmson, Lena
(2005)
Manual for the ASEBA Preschool Forms and Profiles
Achenbach TM, Rescorla LA.
(2000)
The Manual for the ASEBA preschool forms & profiles explains the development, standardization, applications, & profiles for the CBCL//l½-5 and C-TRF. The Manual also provides reliability & validity data, case illustrations, problem prevalence rates, scale scores, scoring instructions, & answers to common questions. 180 pp.
Mapping images to objects by young adults with cognitive disabilities
Carmien, S. & Wohldman E.
(2008)
How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.
Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences.
Meagher G, Szebehely M, editors
(2013)
The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.
'Mastering an unpredictable everyday life after stroke'--older women's experiences of caring and living with their partners.
Gosman-Hedstrom G, Dahlin-Ivanoff S.
(2012)
INTRODUCTION:
The shift from older persons living in institutions to living in the community naturally affects both the older persons and their partners. The informal care is often taken for granted, and the research that focuses on the diversity of older female carers needs is scarce.
AIM:
To explore and learn from the older women how they experience their life situation and formal support as carers of their partners after stroke and to suggest clinical implications.
METHOD:
The design of the study is qualitative being based on the focus group method. Sixteen carers, median age 74 years (range 67-83), participated in four focus group discussions, which each met once for not more than 2 hours.
FINDINGS:
The discussions resulted in one comprehensive theme; 'Mastering an uncertain and unpredictable everyday life'. Three subthemes emerged from the material: 'Living with another man' where the carers discussed not only the marked change in their partner's personality, but also the loss of a life-companion and their mutual intellectual contact; 'Fear of it happening again', comprising the carers' experiences of fear and confinement, of always having to be ready to help and of being trapped at home; 'Ongoing negotiation', referring to the carers' struggling and negotiating not only with their partners, but also with themselves and formal care for time to themselves.
CONCLUSION:
This study helps us to understand how these older women tried to master an uncertain and unpredictable life. Their life had changed radically; now they were always on call to help their partners and felt tied to home. The results draw attention to the carers' need for time to themselves, a greater knowledge of stroke and continuous support from formal care.
2012 The Authors. Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science.
Med rätt att bestämma själv? – ”exit”, ”voice” och personlig assistans
Hugemark, Agneta
(2004)
This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.
Mot en refamilisering av svensk äldreomsorg?
Sand, Ann-Britt
(2007)
Motivation for Money and Care that Adult Children Provide for Parents: Evidence from “Point-Blank” Survey Questions. Working Paper 2004-17
Cox, D. and B. Soldo
(2004)
When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.
Mönster i anhörigomsorgen: En uppföljning i Mullsjö 2010
Malmberg, B. and G. Sundström
(2012)
Institutet för gerontologi (IFG) genomförde 2008 en enkätundersökning bland alla Mullsjöbor som var 55 år och äldre, varav närmare 70 procent svarade eller drygt 1 600 personer. En dryg femtedel gav omsorg i någon form till närstående personer och omsorgsmönstren svarade väl med resultat i andra undersökningar. En mindre del gav "tung" omsorg, oftast till en partner. Fler gav mindre omfattande omsorg till föräldrar eller andra närstående, men det var också vanligt med "lätt" hjälp till grannar m.fl. (Socialstyrelsen 2009).
År 2010 genomfördes en uppföljningsundersökning av IFG med 911 av dessa personer: Nu var 14 procent omsorgsgivare, varav två tredjedelar var samma personer som 2008. Rörligheten var således betydande: Många hade slutat att ge omsorg – eller såg inte längre det de gjorde som omsorg - och ganska många hade börjat göra det. Även 2010 gjorde de flesta relativt "små" insatser, och ganska få av de "lätta" åtagandena 2008 hade blivit "tunga" 2010. Givare av anhörigomsorg delar fortfarande ofta omsorgsansvaret med någon annan anhörig.
I växande utsträckning delas ansvaret också med den kommunala omsorgen: 2010 hade 77 procent av mottagarna av anhörigomsorgen även någon form av kommunal omsorg (40 procent hade hemtjänst), som de anhöriga ganska ofta är nöjda med. Allt fler nås av hemtjänst, färdtjänst, trygghetslarm och/eller annan offentlig omsorg.
Glöm allt men inte mig
Grandin Philomène
(2021)
Det är 80-tal och Philomène och hennes pappa lever ett okonventionellt liv fyllt av kultur och kärlek. Men pengarna är oftast slut. Pappa är Izzy Young, legendaren som upptäckte Bob Dylan och vars Folklore Center i New York utgjorde scen för musiker och poeter som Patti Smith och Allen Ginsberg.
Trettio år senare sjunker Izzy allt djupare in i demens.
En gripande uppväxtskildring och en berättelse om en far och dotter som vägrar släppa taget om livet och varandra.
Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial
Biliunaite Ieva, Kazlauskas Evaldas, Sanderman Robbert, Truskauskaite-Kuneviciene Inga
(2021)
Abstract [en]
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.
Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.
Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.
Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention's platform and the choice of content.
Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.
Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project
D’Amen Barbara, Socci Marco, Di Rosa Mirko, Casu Giulia, Boccaletti Licia, Hanson, Elizabeth, Santini Sara
(2022)
Abstract [en]
The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving "uncooperative" disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving
Planera framtiden – redan idag. Ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga
Anna Pella
(2021)
Skriften Planera framtiden – redan idag är ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga. I skriften finns berättelser från familjer, yrkesverksamma och specialister.
Skriften kan vara ett stöd för personer som lever nära någon med flerfunktionsnedsättning. Den kan också användas som underlag för diskussion i olika verksamheter och utbildningar.
På tal om ålder - Psykiskt välbefinnande – oavsett generation
MIND
(2021)
Sammanfattning:
Psykisk ohälsa ses ofta som en naturlig del av åldrandet – något
att acceptera snarare än att förebygga eller behandla. Psykisk
ohälsa i hög ålder kan dock ofta vara konsekvenser av sociala
förändringar och försämrad hälsa och funktionsförmåga. Denna
rapport syftar till att ge en översikt av forskningsläget gällande
psykisk ohälsa bland äldre personer; dess förekomst, grupper
som har ökad risk för psykisk ohälsa samt förebyggande och
behandlande arbete. I den här rapporten fokuserar vi på åldersgrupper över 65 år – en grupp med stor variation i hälsa och
levnadsförhållanden.
Relatives' Experiences of Mental Health Care, Family Burden and Family Stigma: Does Participation in Patient-Appointed Resource Group Assertive Community Treatment (RACT) Make a Difference?
Nils Sjöström, Margda Waern, Anita Johansson, Bente Weimand, Ola Johansson, Mats Ewertzon
(2021)
Abstract
The aim of this exploratory cross-sectional study was to investigate the experiences of relatives of individuals with severe mental illness with and without participation in patient-appointed Resource Group Assertive Community Treatment (RACT). A total of 139 relatives (79 with and 60 without RACT) completed the Family Involvement and Alienation Questionnaire, the Burden Inventory for Relatives of Persons with Psychotic Disturbances, and the family version of the Inventory of Stigmatizing Experiences. We found that relatives participating in RACT experienced a more positive approach from the healthcare professionals, as well as a lower degree of alienation from the provision of care. Relatives who did not participate in RACT were more afraid that their ill next of kin would hurt someone. No other differences in family burden were found. Experiences of family stigmatization were similar in both groups. In conclusion, participating in patient-appointed RACT may contribute to a higher level of satisfaction for relatives in their encounter with healthcare professionals and a more positive alliance. Implementation of RACT in new settings would require adaptation to local conditions to facilitate cooperation between healthcare staff and other relevant services. Staff training focuses on the case manager function and needs assessment, as well as how to create an alliance with the patient and his/her relatives.
The Family Model Slutrapport från en genomförbarhetsstudie med medarbetare inom barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård i Region Skåne, Region Halland och Region Västra Götaland
Gisela Priebe, Ann-Louise Danlarén, Maria Afzelius
(2021)
Sammanfattning
The Family Model är ett familjeorienterat verktyg där kliniker med hjälp av en visuell modell tillsammans med familjen kartlägger hur psykisk ohälsa påverkar och påverkas av relationerna i familjen och omständigheterna omkring den. Modellen har utvecklats av Adrian Falkov, barn- och ungdomspsykiater i Australien. Syftet med studien är att undersöka om modellen kan vara användbar i Sverige. Studien består av två delar. I den första delen fick medarbetare i barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård sätta sig in i modellen genom att bland annat gå en webbkurs, eventuellt prova modellen i praktiken (frivilligt) och sedan delge sin uppfattning i en enkät. Sammanfattningsvis finner man modellen användbar, både i verksamheter som vill utveckla ett tydligare familjeperspektiv i sitt arbete och som komplement till andra interventioner, som många av deltagarna är förtrogna med. Några menar att de redan har välfungerande metoder som är bättre anpassade till deras arbete med t.ex. späd- och småbarn och deras föräldrar. Det finns också en önskan att den engelska webbkursen och den visuella modellen skall översättas och anpassas till svenska. I den andra delen av studien gick vi igenom ett antal styrdokument för vård av barn och vuxna med psykisk ohälsa för att se vilken vägledning dessa ger för arbetet med familjer med psykisk ohälsa. Många styrdokument tar upp arbete med familj och närstående till patienten, men detta sker oftare ur ett individorienterat än ur ett familjeorienterat perspektiv. Implementering och utvärdering av familjeorienterade interventioner vid psykisk ohälsa framstår som en fortsatt angelägen uppgift.
The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective
O'Sullivan Anna, Alvariza Anette, Öhlén Joakim, Larsdotter Cecilia
(2021)
OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.
METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.
RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).
SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.
Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare"
Aass, Lisbeth Kjelsrud
(2021)
Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare.
Aims: The overall aim of this thesis was to illuminate perceptions of everyday life, family support from mental healthcare professionals, and quality of community mental healthcare from the perspectives of families living with mental illness. A further aim was to elucidate families' and mental healthcare professionals' experiences of Family Centered Support Conversations (FSCS) in community mental healthcare.
Methods: A descriptive design with qualitative and quantitative methods was used. Qualitative data were collected by means of family interviews with seven families living with a young adult suffering from mental illness (n= 17 participants) (I, III) and individual interviews with mental healthcare professionals (n= 13) (IV). The data were analyzed using phenomenography (I, III, IV). Quantitative data were collected from adult patients (n= 43) suffering from mental illness and family members (n=43) (II) in community mental healthcare using the Family Perceived Support Questionnaire (ICE-FPSQ), the Quality in Psychiatric Care – Community Out -Patient (QPC-COP) and Out-Patient Next of Kin (QPCCOPNK). The data were analyzed using non- parametric statistics (II).
Main findings: Families balanced between letting go and enabling the young adult to become independent while remaining close to help him/her complete education, work and have a social life (I). The young adults tried not to be a burden, but still longed for family members to understand them (I). Family members intervened as best they could (I), but felt there was a lack of support and respect and no invitation to take part in the mental healthcare
(II). Family members reported significantly lower quality of community mental healthcare than patients (II). Healthcare professionals held back information although young adult patients had consented to give family members insight (I). Athough the FCSC was experienced as new and uncomfortable, the families also regarded it as beneficial and safe
(III). It facilitated an opportunity to share and reflect on the family's beliefs, and enabled them to find new beliefs and opportunities in everyday life (III). The FCSC helped healthcare professionals to structure the involvement of family members as a complement to care as usual, although there was still a need to adjust the intervention (IV).
Conclusions: Young adults suffering from mental illness are reliant on support from family to manage everyday life. Mental healthcare professionals play an important role in facilitating a safe environment for sharing beliefs and bringing strengths and resources to the front seat in family-centered support conversations. When family are included as part of the mental healthcare team, this enhances their ability to be supportive.
Utvärdering av familjehelger – ett stöd till utlandsveteranfamiljer Invidzonen – Försvarsmakten
Eva Sennemark, Linnéa Aldman, Elizabeth Hanson
(2021)
Försvarsmakten finansierar sedan 2018 familjehelger för utlandsveteraner och deras familjer som en del av personal- och anhörigarbetet. Familjehelgerna genomförs av anhörignätverket Invidzonen i syfte att stötta och informera föräldrar där den ena föräldern har varit, är utsänd eller kommer att sändas ut på ett internationellt uppdrag.
Nationellt kompetenscentrum anhöriga (Nka) har på uppdrag av Försvarsmakten genomfört en utvärdering av familjehelgerna, vilket redovisas i denna rapport. Fokus för utvärderingen har varit måluppfyllelse och förväntade effekter för deltagande familjer.
What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?
Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson, Steven M. Schmidt
(2021)
Abstract
Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/signifcant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that afects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers' perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using frst-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were
either aged 60+ years themselves or were caring for someone who was aged 60+ years.
Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic signifcantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: 'family motivation' and 'the greater good motivation'. These, according to our results, almost equally valued dimensions, described the difering reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers' perceived motivations and obstacles regarding carer involvement in research. Paying attention to the difering motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact.
Conflict and repair in addiction treatment: An attachment disorder perspective
Flores PJ.
(2006)
Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.
Conflict and repair in addiction treatment: An attachment disorder perspective
Flores PJ.
(2006)
Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.
Conflict and repair in addiction treatment: An attachment disorder perspective
Flores PJ.
(2006)
Clinical experience and research findings suggest that approaches to treatment that concomitantly increase the intensity of affective bonds and repair the inevitable disruptions of those bonds are the sine qua non of all effective psychotherapy. It is suggested here that this is especially true for substance abusers. It is further suggested that group psychotherapy can be an especially effective medium for providing the delivery of this crucial element of therapy if the proper paradigm for guiding treatment application is adapted. Attachment theory furnishes an especially effective theoretical formula for informing the way that group therapy should be applied if the full potential of treatment is to be maximized with substance abusers.
Conformity and resistance in Self-Management Strategies of ‘Good Girls’.
Sanders, J., & Munford, R.,
(2008)
This article examines how girls manage challenging encounters with non-familial adults. Drawing on a subset of qualitative data collected as part of a larger ethnographic study, it examines the ways girls maintain a strong sense of self as a good person in the face of interpersonal challenge from these non-familial adults. The discourse of the 'good girl' allows them to resist excessive demands of adults and provides opportunities to have fun. The importance of the parent—child relationship in terms of providing a safe context from which the girls can generate the good and bad girl facades is also highlighted.
Connectedness in the lives o folder people in Ireland: a study of the communal participation of older people in two geographic localities
Gallagher, C
(2012)
Connecting Children: Care and Family Life in Later Childhood.
Brannen J, Heptinstall E, Bhopal K.
(2000)
Connecting Children focuses on children's understandings of care and their views of different family lives. It portrays the lives of children aged 11-12 and shows how families connect children in different ways both in the household but also in their wider kinship networks. The children studied reflect upon family life and especially upon situations where their own family lives change dramatically, such as when parents divorce or are unable to care for them.
This book will be of interest to those working in education, social work, child care, counselling, social policy and childhood studies.
Connecting Gender & Ageing. A Sociological Approach
Arber, S. and J. Ginn
(1995)
Consistency of quality assessments in long-term care by the clients, family members and named
Kahanpää, A., Perälä, M. L., & Räikkönen, O.
(2006)
Consumer and carer participation in mental health care: The carer’s perspective: Part 2 – barriers to effective and genuine participation
Goodwin, V. and B. Happell
(2007)
Family members and significant others provide significant proportions of unpaid care for people experiencing a mental illness. Although the carer role is pivotal to contemporary mental health service delivery, the role of carers and the issues they face have received only scant attention in the literature. This paper presents the second part of the findings of an exploratory, qualitative inquiry, which sought greater understanding of carers' experiences of, and attitudes to opportunities for participation in care and treatment at an individual or systemic level, with particular emphasis on the role of psychiatric nurses in encouraging or discouraging participation. This paper explores the theme of systemic barriers to participation. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting carers' increased participation in the mental health care for their relative or significant other.
Consumption of psychotropic drugs among adults who were in societal care during their childhood
Vinnerljung B & Hjern A
(2014)
BACKGROUND:
Previous studies have demonstrated greatly increased risks of severe psychiatric morbidity for former child welfare clients. We investigated psychotropic medication in this population as a proxy indicator of less severe mental health problems.
METHODS:
This register-based cohort study comprises the Swedish birth cohorts between 1973 and 1981, 765,038, including 16,986 former children from societal care and 1296 national adoptees. Estimates of risk of retrieval of prescribed psychotropic medications during 2009 were calculated in four categories (any such drug, neuroleptics, antidepressants and anxiolytics/hypnotics) as hazard ratios (HRs) with 95% confidence intervals (CIs) using Cox regression analysis, adjusting for birth parental background including psychiatric morbidity.
RESULTS:
17-25% of men and 25-32% of the women with childhood experiences of societal care retrieved at least one prescription of a psychotropic drug, equivalent to age-adjusted HRs of between 2.1 and 3.3, compared with the general population. Adjusting the analysis for birth parental confounders attenuated risks to between 1.5 and 2.7, depending on subgroup and sex. Men-especially those that entered care settings during their teens-tended to have higher risks of all outcomes. Adjusted HRs for national adoptees were similar to former children in care.
CONCLUSIONS:
Former residents of societal care are a high-risk group for mental health problems well into mature adult age, demonstrating the need for systematic screening and implementation of effective prevention/treatment during time in care.
Consumption of psychotropic drugs among adults who were in societal care during their childhood
Vinnerljung B & Hjern A
(2014)
BACKGROUND:
Previous studies have demonstrated greatly increased risks of severe psychiatric morbidity for former child welfare clients. We investigated psychotropic medication in this population as a proxy indicator of less severe mental health problems.
METHODS:
This register-based cohort study comprises the Swedish birth cohorts between 1973 and 1981, 765,038, including 16,986 former children from societal care and 1296 national adoptees. Estimates of risk of retrieval of prescribed psychotropic medications during 2009 were calculated in four categories (any such drug, neuroleptics, antidepressants and anxiolytics/hypnotics) as hazard ratios (HRs) with 95% confidence intervals (CIs) using Cox regression analysis, adjusting for birth parental background including psychiatric morbidity.
RESULTS:
17-25% of men and 25-32% of the women with childhood experiences of societal care retrieved at least one prescription of a psychotropic drug, equivalent to age-adjusted HRs of between 2.1 and 3.3, compared with the general population. Adjusting the analysis for birth parental confounders attenuated risks to between 1.5 and 2.7, depending on subgroup and sex. Men-especially those that entered care settings during their teens-tended to have higher risks of all outcomes. Adjusted HRs for national adoptees were similar to former children in care.
CONCLUSIONS:
Former residents of societal care are a high-risk group for mental health problems well into mature adult age, demonstrating the need for systematic screening and implementation of effective prevention/treatment during time in care.
Contemporary home-based care : encounters, relationships and the use of distance-spanning technology
Wälivaara, B.-M.
(2012)
Encounters and relationships are basic foundations of nursing care and the preconditions for these foundations are changing along with a change in healthcare towards an increase of home-based care. In this development the use of distance-spanning technology is becoming increasingly common. There is a need to develop more knowledge and a theory base about the role of the encounter and the relationship in home-based care. Most studies so far cover the topic in the context of hospital care. There is also need to develop more knowledge of experiences of distance-spanning technology in home-based care. The overall aim of this doctoral thesis was to explore home-based care with specific focus on the use of distance-spanning technology, encounters and relationships from the perspectives of persons in need of care, general practitioners (GPs) and registered nurses (RNs).
The thesis contains studies with persons in need of home-based care (n=9), general practitioners (n=17) and registered nurses (n=24). The study with RNs consisted of registered nurses (n=13) and district nurses (n=11). The data was collected through individual interviews and group interviews and were analyzed by qualitative content analysis with various degrees of interpretations.
Home-based care with mobile distance-spanning technology (MDST) was experienced as positive and it opens up possibilities, however MDST also has limitations. It was considered that MDST should be used by care professionals and not by the person in need of care or their family members. The MDST affects home-based care and the work and cooperation in home-based care. The expression was that a face-to-face encounter should be the norm and MDST cannot replace all face-to-face encounters in home-based care. MDST could work in some situation, but should be used with caution. The findings also show that good encounters in home-based nursing care contain dimensions of being personal and professional, and that the challenge is to create a good balance between these. Being together in the encounter is a prerequisite for the development of relationships and good nursing care at home is built on a trusting relationship. The relationship is a reciprocal relationship that the person and the nurse develop together and nurses have to consciously work on the relationship. It seems that a good encounter and a trusting relationship could affect the views on the use of distance-spanning technology in homebased care. The participants in the studies in general expressed positive attitude towards distancespanning technology at the same time as they expressed caution about an extensive use of it in home-based care. They highlighted the importance of positive encounters and the importance of the relationship in order to receive and provide good care and nursing care in the homes. The context of home-based care has changed and will continue to change over time. This change leads to that the use of distance-spanning technology is increasing and challenges the nurses to develop work strategies that can promote competence, caring and communication in the encounter, and building and maintaining relationships in home-based nursing care.
Continuity and Change in Transnational Italian Families: The Caring Practices of Second-Generation Women
Zontini, E.
(2007)
Continuity of the self in later life: Perceptions of informal caregivers
Åberg, A. C., Sidenvall, B., Hepworth, M., O'Reilly, K., & Lithell, H.
(2004)
Controlled trial of the short- and long-term effect of psychological treatment of post-partum depression – 1. Impact on maternal mood!
COOPER, P. J., MURRAY, L., WILSON, A. & ROMANIUK, H.
(2003)
Background Psychological interventions for postnatal depression can be beneficial in the short term but their longer-term impact is unknown.
Aims To evaluate the long-term effect on maternal mood of three psychological treatments in relation to routine primary care.
Method Women with post-partum depression (n=193) were assigned randomly to one of four conditions: routine primary care, non-directive counselling, cognitive—behavioural therapy or psychodynamic therapy. They were assessed immediately after the treatment phase (at 4.5 months) and at 9, 18 and 60 months post-partum.
Results Compared with the control, all three treatments had a significant impact at 4.5 months on maternal mood (Edinburgh Postnatal Depression Scale, EPDS). Only psychodynamic therapy produced a rate of reduction in depression (Structured Clinical Interview for DSM—III — R) significantly superior to that of the control. The benefit of treatment was no longer apparent by 9 months post-partum. Treatment did not reduce subsequent episodes of post-partum depression.
Conclusions Psychological intervention for post-partum depression improves maternal mood (EPDS) in the short term. However, this benefit is not superior to spontaneous remission in the long term.
Convention on the Rights of the Child
UN
(1989)
The United Nations Convention on the Rights of the Child (commonly abbreviated as the CRC, CROC, or UNCRC) is a human rights treaty which sets out the civil, political, economic, social, health and cultural rights of children. The Convention defines a child as any human being under the age of eighteen, unless the age of majority is attained earlier under a state's own domestic legislation.
Nations that ratify this convention are bound to it by international law. Compliance is monitored by the UN Committee on the Rights of the Child, which is composed of members from countries around the world. Once a year, the Committee submits a report to the Third Committee of the United Nations General Assembly, which also hears a statement from the CRC Chair, and the Assembly adopts a Resolution on the Rights of the Child.
Governments of countries that have ratified the Convention are required to report to, and appear before, the United Nations Committee on the Rights of the Child periodically to be examined on their progress with regards to the advancement of the implementation of the Convention and the status of child rights in their country. Their reports and the committee's written views and concerns are available on the committee's website.
The UN General Assembly adopted the Convention and opened it for signature on 20 November 1989 (the 30th anniversary of its Declaration of the Rights of the Child). It came into force on 2 September 1990, after it was ratified by the required number of nations. Currently, 196 countries are party to it, including every member of the United Nations except the United States.
Two optional protocols were adopted on 25 May 2000. The First Optional Protocol restricts the involvement of children in military conflicts, and the Second Optional Protocol prohibits the sale of children, child prostitution and child pornography. Both protocols have been ratified by more than 150 states.
A third optional protocol relating to communication of complaints was adopted in December 2011 and opened for signature on 28 February 2012. It came into effect on 14 April 2014.
Conversation partner training with spouses of persons with aphasia: A pilot study using a protocol to trace relevant characteristics
Saldert C, Backman E, Hartelius L.
(2012)
Background: Conversation partner training can be effective in improving communication in aphasia. However, there is a need for further research about effects of specific training programmes as well as about the relevant characteristics of the conversation partners who are to be candidates for training.
Aims: This pilot study explores the applicability of an adaptation of a conversation partner training programme. In addition, a protocol for assessment of variables relating to the person with aphasia and the conversation partner that may be involved in changes in conversational interaction is examined.
Methods & Procedures: Three dyads with persons with aphasia and their spouses participated in this explorative study with a case-series design. The training outcome was monitored with measures of perceived functional communication and analysis of multiple video-recorded natural conversations obtained at baseline, post intervention, and at a 12-week follow-up. Repeated measures of comprehension, word fluency, and psychological well-being were obtained as well as descriptive measures of the executive function and a profiling of attitudes and behaviour in communication in the spouses.
Outcomes & Results: All three persons with aphasia and two of the spouses reported a slight improvement in the measure of perceived functional communication. This perception of improvement was also reflected in blinded, independent assessments of ability to support communication in conversations for the two spouses who reported improvement. The profiling of the third spouse indicated problems in attitudes to communication and also in aspects of executive function, and may account for the lack of intervention effects seen in the third dyad.
Conclusions: The results show that intervention with the adapted training programme may be effective. It might be argued that the outcome measures as well as other measures fulfil their purpose. The profiling of relevant traits in the conversation partner may be useful, although the prognostic validity of the instruments needs to be further evaluated.
Co-operation for seamless health care : Ett seminarium med syfte att skapa en nationell överblick av olika aktörers satsningar på IT-stöd för vårdkedjor : Kalmar den 12-13 november.
Carelink Kalmar e-health Institute.
(2002)
Co-ordination services in Scotland: A report to care co-ordination network UK
Purves, R., Ridell, S., & Weedon, E.
(2008)
COPD in primary care: exploring conditions for implementation of evidence-based interventions and eHealth
Lundell, Sara
(2018)
Doktorsavhandling
Abstract [en]
Chronic obstructive pulmonary disease (COPD) is a major public health problem. Symptoms and comorbidities associated with COPD affect the whole body. Clinical guidelines for COPD recommend pulmonary rehabilitation (PR) including exercise training and education promoting self-management strategies. Despite the positive effects on health status, few people with COPD have access to PR. Electronic health (eHealth) has been seen as promising for increased access to evidence-based interventions. To increase the likelihood of a successful implementation, it is important to identity enablers and barriers that might affect implementation outcomes. The aim of this thesis is to explore the experiences, interactions and contexts of the management of COPD in primary care, as well as the design, experienced relevance, effect and expected usefulness of eHealth solutions. The thesis is based on four papers that have used qualitative, quantitative and mixed methods. Qualitative interviews (papers I, II, IV) and focus group discussions (paper IV) were analysed using qualitative content analysis (papers I, IV) and grounded theory (paper II). Quantitative data, collected using questionnaires (paper I) and in a systematic review (paper III) was analysed with descriptive statistics (paper I) and meta-analysis (paper III). The qualitative and quantitative findings in paper I and II were merged in a mixed methods design. Participants in the studies included healthcare professionals (papers I, IV), people with COPD (papers II, III, IV), their relatives (paper IV), senior managers representing primary care centres (paper I), and external researchers (paper IV). The findings in this thesis gave insight in the complex interactions within COPD management between the healthcare organisation (e.g. resources and priority), healthcare professionals (e.g. attitudes, collaboration and competence) and people with COPD (e.g. emotions, attitudes and coping). The healthcare organisation is fragmented with few resources and COPD care takes low priority. The healthcare professionals are Building COPD care on shaky ground (paper I), where the shaky ground is a presentation of the non-compliant organisation and other challenging circumstances. Driven, responsible and ambitious healthcare professionals wish to provide empowering COPD interventions through interprofessional collaboration, but are inhibited by their limited knowledge of and experience with COPD. People with COPD are (Re)acting in an ambiguous interaction with primary care providers (paper II), have limited knowledge and struggle with stigma, while they try to accept and manage their disease. The attitudes and support of healthcare professionals' are essential for necessary interaction and self-management strategies. For people with COPD, this can take different paths: either enhancing confidence with empowering support or coping with disempowering stigma and threat. eHealth solutions such as telehealth, have been used to provide interventions to people with COPD through phone calls, websites or mobile phones, in combination with exercise training and/or education. They show a significant effect on physical activity level, but not on physical capacity and dyspnoea (paper III). Healthcare professionals, people with COPD and their relatives, and external researchers report that, to be useful and relevant in clinical practice, an eHealth tool should be reinforcing existing support structures (paper IV). Furthermore, it needs to fit in the current routines and contexts and create a sense of commitment in its users. According to the participants, information about selfmanagement strategies, such as how-to videos are valuable, and need to help them identify themselves with the people in the videos. The participants regard eHealth as providing knowledge and support for self-management. In conclusion, there is a need for implementation of clinical guidelines for COPD in primary care in order to improve both the management of COPD, as well as the interaction between healthcare professionals and people with COPD. Several actions are needed to facilitate this implementation. The priority and status of COPD management in primary care need to be raised. In addition, more resources (e.g. healthcare professionals) for COPD interventions is required to enhance the conditions for interprofessional collaboration and patient participation. Furthermore, it is important to include physiotherapists in COPD management, considering the focus on exercise training and physical activity. Healthcare professionals in primary care need further training and more time to educate and empower people who have COPD. The use of eHealth may lead to improvements in patient outcomes, although more research on web-based interventions is required. User involvement in the development process of an eHealth tool increases its usefulness and relevance in clinical practice and everyday life. The findings from this thesis may guide implementation processes in primary care, as well as the development of eHealth tools for people with COPD or other long-term conditions.
Coping as a caregiver: A question of strain and its consequences on life satisfaction and health-related quality of life
Dahlrup, B., Ekström, H., Nordell, E., & Elmståhl, S.
(2015)
A majority of us will at some point in our lives take care of family members, relatives and friends in need of assistance. How will this affect us?
Strain related to life satisfaction (LS) and health related quality of life (HRQoL) among caregivers aged 60 years and older has not been previously studied.
Objectives
The main objective was to describe characteristics of non-caregivers (n = 2233) and caregivers (n = 369). Further objectives were to examine differences in HRQoL and LS between caregivers and non-caregivers, and between caregivers stratified by level of strain.
Methods
We analyzed the differences in socio-demographics, social participation, locus of control and symptoms between groups. HRQoL was assessed by Short Form Health Survey (SF-12/PCS and MCS). LS was measured by the Life Satisfaction Index-A (LSI-A).
Results
Caregivers were younger, had more years of formal education, more often cohabiting and relied less on powerful others than non-caregivers. One hundred and thirty-three (36%) caregivers reported high strain. In a three-group comparison including non-caregivers and caregivers stratified for strain, high strain was associated with lower SF12-PCS, SF12-MCS and LSI-A (0.014, <0.001 and <0.001, respectively).
Conclusion
High strain affects caregivers' HRQoL and LS in a negative way.
Practice
It is important for the health care sector to consider the possibility that symptoms in a person acting as a caregiver can be related to high perceived strain.
Implications
A general policy program aiming to identify caregivers and their needs for support is much needed.
Coping efficacy and psychological problems of children of divorce
Sandler, I.N, Tein, J., Mehta, P., Wolchik, S. & Ayers, T.
(2000)
Three models of the relations of coping efficacy, coping, and psychological problems of children of divorce were investigated. A structural equation model using cross-sectional data of 356 nine- to twelve-year-old children of divorce yielded results that supported coping efficacy as a mediator of the relations between both active coping and avoiding coping and psychological problems. In a prospective longitudinal model with a subsample of 162 of these children, support was found for Time 2 coping efficacy as a mediator of the relations between Time 1 active coping and Time 2 internalizing of problems. Individual growth curve models over four waves also found support for coping efficacy as a mediator of the relations between active coping and psychological problems. No support was found for alternative models of coping as a mediator of the relations between efficacy and symptoms or for coping efficacy as a moderator of the relations between coping and symptoms.
Coping responses inventory: An update on research applications and validity
Moos R.
(2004)
Coping responses inventory: An update on research applications and validity
Moos R.
(2004)
This brief self-report inventory identifies cognitive and behavioural responses the individual used to cope with a recent problem or stressful situation. The 8 scales include Approach Coping Styles (Logical Analysis, Positive Reappraisal, Seeking Guidance and Support, and Problem Solving) and Avoidant Coping Styles (Cognitive Avoidance, Acceptance or Resignation, Seeking Alternative Rewards, and Emotional Discharge). Information about reliability and validity is presented in the professional manual for each version.
The CRI can be used in in counselling, stress management education, and other settings to identify and monitor coping strategies in adults and adolescents, to develop better clinical case descriptions, and to plan and evaluate the outcome of treatment.
Two separate versions of the CRI have been developed, the CRI-Adult (older than 18 years of age) and the CRI-Youth (ages 12-18 years). Each version has its own manual and an Ideal and an Actual Form. The Ideal Form may be used to compare actual and preferred coping styles, to set treatment goals, and to monitor progress. The Actual Form surveys the individual's actual coping behaviour, whereas the Ideal Form surveys preferred coping styles. Both forms are written at a 6th-grade reading level.
Individuals complete the self-report inventory, marking answers on the answer sheet. The carbonless bottom sheet contains a scoring grid for quick and easy calculation of raw scores. The back page of the answer sheet contains a profile for determining and plotting T-scores and examining patterns of coping. Scoring and profiling take about 5 minutes.
Coping Responses Inventory: Youth form, professional manual
Moos R.
(1993)
Coping Responses Inventory: Youth form, professional manual
Moos R.
(1993)
Coping Responses Inventory: Youth form, professional manual
Moos R.
(1993)
Coping strategies and styles of family carers of persons with enduring mental illness: a mixed methods analysis
Kartalova-O’Doherty, Y. & Doherty, D.T.
(2008)
Coping strategies of parents facing child diabetes mellitus
Azar, R., & Solomon, C. R.
(2001)
This study identified differences in strategies used by mothers and fathers (N = 60) in coping with their child's insulin-dependent diabetes mellitus. The Ways of Coping Questionnaire (WCQ) was administered during a home interview. Results showed that both parents used planful problem solving, exercised positive reappraisal, and sought social support frequently, with mothers using more planful problem-solving strategies than fathers. Within the family, analyses showed that fathers were more likely to use distancing, independent of the child's sex, whereas mothers were more likely to frequently use all the coping strategies when the child was a girl. The implications of the results for nursing are discussed. Copyright © 2001 by W.B. Saunders Company
Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease
Cooper, C., Katona, C. & Orrell, M.
(2008)
Coping with caring: Profiles of caregiving by informal carers living with a loved one who has Dementia
Kraijo H, Brouwer W, de Leeuw R, Schrijvers G, van Exel J.
(2012)
Background and aim: While the number of people suffering from Dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has Dementia experience their caregiving situation. Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements. Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers. Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.
Coping with chronic diseases
Maes, S., Leventhal, H., de Ridder, DTD.
(1996)
Coping with dementia and older families of adults with Down syndrome
Janicki, M. P., Zendell, A., & DeHaven, K.
(2010)
Coping, Social Relations, and Communication: A Qualitative Exploratory Study of Children of Parents with Cancer
Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G.
(2008)
The purpose of this qualitative study of families where a parent has cancer was to explore ways of informing the child of the parent's illness, how the child perceives the parent's emotional state, how the child copes with the parent's illness, and how this coping relates to the parent's coping and concerns for the child. Twenty-one children from 15 families and their parents were interviewed. In 13 families the mother was ill, in two the father. Children were aware of the facts of the illness, but there was limited emotional communication between the generations. The children were very observant of both the ill and the healthy parent's emotional condition. The children's observations and expressions led us to identify five coping strategies the younger generation used: Helping others, parentification, distraction, keeping it in the head, and wishful thinking. Both adaptive and destructive examples of parentification were found. Communication patterns and parental coping seemed to be highly related to the child's coping repertoire. Even though most children seemed to manage rather well, all children were strongly affected by the illness. The 'healthiest' adaptation related to factors within the family system, which has implications for the provision of help.
Co-resident care-giving and problematic sleep among older people: evidence from the UK Household Longitudinal Study
Emma Maun, Karen Glaser, Laurie Corna
(2019)
Abstract:
In light of current pressures within formal social care services, informal carers assume an important role in meeting the care needs of a growing number of older people. Research suggests relationships between care-giving and health are complex and not yet fully understood. Recently, wide-ranging associations between sleep and health have been identified, however, our understanding of the links between care-giving and sleep is limited at present. This study assesses longitudinal patterns in co-resident care-giving and problematic sleep among older people in the United Kingdom. Our sample included 2,470 adults aged 65 years and older from the UK Household Longitudinal Study. Problematic sleep was defined as two or more problems in going to sleep, staying asleep or sleep quality. Using logistic regression models, we assessed how co-resident care-giving status, intensity and transitions influence the likelihood of problematic sleep in the following year, adjusting for potential confounding factors. Adjusted analyses found co-resident care-givers were 1.49 (95% confidence interval = 1.06–2.08) times more likely to report problematic sleep in the following year, relative to those not providing care. Care-giving over 20 hours per week and continuous co-resident care-giving also significantly increased the odds of problematic sleep. This suggests older co-resident care-givers may be at greater risk of incurring sleep problems than non-care-givers. Further longitudinal research is needed to investigate care-giver-specific consequences of poor sleep.
Correlates of intrusion and avoidance as stress response symptoms in family carers of patients suffering from dementia
Ulstein, I., Wyller, T. B. & Engedal, K.
(2008)
Correlational and experimental study of resilience in children and parentally bereaved children
Sandler, I., Wolchik, S., Davis, C., Haine, R. & Ayers, T.
(2003)
This chapter presents research on resilience of children and adolescents who have experienced two major disruptions of the nuclear family, parental divorce and parental bereavement. The two research programs share a common research paradigm in which there is an iterative relationship between correlational and experimental studies (Sandler, Wolchik, MacKinnon, Ayers, & Roosa, 1997). Correlational studies are used to identify protective and vulnerability factors, particularly those that may be modifiable by planned interventions. Experimental studies are designed on the basis of the small theory that changing these factors in the desirable direction will promote resilience. Randomized experimental trials of the interventions are conducted to test whether the intervention has changed these vulnerability and protective factors and reduced negative outcomes and whether change in negative outcomes is mediated by change in the vulnerability and protective factors (Sandler et al., 1997). The mediational analysis within the randomized trial provides a stronger test of the causal role of the vulnerability and protective factors to influence negative outcomes than is provided by the correlational studies, and thus contributes to theory about resilience (Rutter, Pickles, Murray, & Eaves, 2001).
The chapter first presents a theoretical framework that specifies alternative models of the influence of vulnerability and protective factors on the resilience of children experiencing significant adversities. We then discuss correlational research on key constructs in the theoretical framework: adversity, and child and family protective and vulnerability factors.
Cortical processing of tactile language in a postlingually deaf-blind subject
Osaki Y, Doi K, Takasawa M, Noda K, Nishimura H, Ihara A, et al.
(2004)
We compared neural activation detected by magnetoencephalography (MEG) during tactile presentation of words and non-words in a postlingually deaf-blind subject and six normal volunteers. The left postcentral gyrus, bilateral inferior frontal gyri, left posterior temporal lobe, right anterior temporal lobe, bilateral middle occipital gyri were activated when tactile words were presented to the right hand of the deaf-blind subject. This set of activated regions was not observed in the normal volunteers, although activation of several combinations of these regions was detected. Positron emission tomography confirmed the location of the MEG-activated areas in the deaf-blind subject. Our results demonstrated that the deaf-blind subject is heavily involved in interpreting tactile language by enhancing cortical activation of cognitive and semantic processing. © 2004 Lippincott Williams & Wilkins.
Cortisol levels six-years efter participation in the Family Bereavement Program
Luecken, L., Hagan, M., Sandler, I.N., Tein, J., Ayers, T.S. & Wolchik, S.A.
(2010)
Recent studies have found short-term adrenocortical benefits of early interventions for at-risk children. The current study evaluated the effects of the Family Bereavement Program on cortisol levels six years after the program. Parentally bereaved children were randomly assigned to the 12-week preventive intervention (n=78) or a self-study control (n=61) condition. Six years later (mean age 17.5), salivary cortisol levels were measured before and after a conflict discussion task conducted in late afternoon/early evening. The intervention group had significantly higher cortisol levels across the task compared to the control group, and lower cortisol was associated with higher externalizing symptoms. The group effect did not differ by age at the time of death, and the group difference remained significant after adjustment for pre-intervention mental health and current mental health symptoms. Results suggest that a family-focused intervention for parentally bereaved youth may have prevented the development of attenuated cortisol secretion suggestive of dysregulation and associated with externalizing problems.
Costs and Caregiver Consequences of Early Supported Discharge for Stroke Patients
Teng J, Mayo NE, Latimer E, Hanley J, Wood-Dauphinee S, Côté R, et al.
(2003)
Background and Purpose— Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care.
Methods— We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home.
Results— Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group.
Conclusions— Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care.
Counselling som samtalsstöd i socialt arbete
Larsson, S.
(2010)
Counselling. Stödsamtal i social arbete. S. Larsson and S. Trygged
Couples' provision of informal care for parents and parents-in-law: far from sharing equally?
Henz, U
(2009)
This study examines whether and how couples share the provision of informal care for their parents. Four waves of the British General Household Survey contain cross-sectional information about caring for parents and parents-in-law. Descriptive and multivariate analyses were conducted on 2214 couples that provided parent care. The findings emphasise married men's contribution to informal caring for the parental generation and at the same time demonstrate the limits of their involvement. Spouses share many parts of their care-giving but this arrangement is less common with respect to personal and physical care. The more care is required the more likely are people to participate in care for their parents-in-law. More sons-in-law than daughters-in-law provide care but, once involved, daughters-in-law provide on average more hours of care than sons-inlaw. Own full-time employment reduces both men's and women's caring for their parents-in-law, and men's caring drops further if their wife is not in the labour market. The findings suggest that daughters-in-law often take direct responsibility whereas sons-in-laws' care-giving depends more on their wives' involvement. Children-in-laws' informal care-giving might decrease in the future because of women's increasing involvement in the labour market and rising levels of nonmarital cohabitation in mid-life.
Couples- versus individual-based therapy for alcohol and drug abuse: Effects on children's psychosocial functioning
Kelley ML, Fals-Stewart W.
(2002)
The study compared the effect of couples-based vs individual-based therapy for men who entered outpatient substance abuse treatment on the psychosocial functioning of children in their homes. Men were randomly assigned to (1) behavioral couples therapy (BCT), (2) individual-based treatment (IBT) or (3) couples-based psychoeducational attention control treatment (PACT). For both children of alcohol (N=71) and drug-abusing men (N=64), parents' ratings of children's psychosocial functioning was higher for children whose fathers participated in BCT at posttreatment and at 6- and 12-mo follow-up than for children whose fathers participated in IBT or PACT. BCT resulted in greater improvements in parents' dyadic adjustment and fathers' substance use. Thus, couples-based intervention that addresses both issues may have greater benefits for children in these homes. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
CPICS Child and Parents’ Interaction Coding system
Hedenbro, Monica & Lidén, Anette
(2001)
The aim of this thesis was to describe how early triadic interaction between the newborn child and its mother and father begins, develops, and matures over the child's first 4 years of life. Systemic family theory and developmental theory are combined to go beyond the "mother-child" dyad to the "mother-father-child" triad. Lausanne Trilogue Play (LTP, originally Lausanne Triadic Play) was developed by Elisabeth Fivaz and her learn in Lausanne, Switzerland, and used to carry out standardised studies of child-mother-father interaction. The family is placed in a triangle that allows all three partners optimal access to each other. The focus of this thesis was to describe triadic interaction when all members of the triad interact with each other. It is based on a pioneering longitudinal and prospective study. It was begun with interviews when the parents were expecting their first child. The development of triadic interaction was then monitored by repeated, videotaped LTP observations when the child was 3, 9, 18, and 48 months of age. The study is part of an international collaboration to describe the development of triadic interaction in four groups: 20 Swiss German-speaking families, 20 Swiss French-speaking families, 20 American families (Seattle, Washington, USA), and 20 Swedish families. In Sweden, consecutive Swedish-speaking couples were recruited by midwives at a maternity health care clinic in Stockholm. Twelve boys and 8 girls were born. To analyse the children's communicative skills in relation to their behaviour at age 4 years, the preschool teachers were asked to fill in the Preschool Behaviour Questionnaire (PBQ). The author developed the Child-Parents-Interaction Coding System (CPICS) to analyse quantitative and qualitative variables in triadic interaction. The CPICS was used to analyse LTP observations of the Swedish families over time and to compare the Swedish and American groups of families. One child, a girl, exhibited a typical development. At the age of 5 she was referred to a child and adolescent neuropsychiatric department where, at the age of 7 years, she was diagnosed with an autism spectrum disorder. She was excluded from the group analysis and instead presented as a case report. When the children were 3 months of age, parents held back concerning contribiltion (the starting point for a sequence of interactions) and allowed the "child's just being- to launch conversation. This pattern persisted up to 48 months, with the parents giving the child space. Types or child contributions varied over time. When the child was 3 months old, its parents treated all its behaviours as contributions for starting points of conversation, while child contributions at 48 months generally had a communicative character. Coparenting seems to set the structure for early communication by using various nonverbal, vocal, and verbal methods to support the child in turn-taking sequences. A cultural difference in the tempo of play between American and Swedish families was found. Although both groups of families interacted in a synchronized and reciprocal way, the pace of play in triadic interaction was taster in American families. Positive correlations between complex triadic interaction (number of turn-taking sequences) at 3, 9, and 18 months (significant at 9 months) and preschool teachers' assessments of children's social competence at 48 months suggest some predictive power of this variable in the assessment system. The autistic girl and her parents exhibited deviations in early triadic communication - most clearly when she was 9 months old. Findings are discussed regarding their importance concerning early interventions in the family system.
Critical Social Policy 1995
Morris, Jenny & Keith, Lois
(1995)
This article looks at how the children of disabled parents are being defined as 'young carers', arguing that the way in which this is hap pening undermines both the rights of children and the rights of disabled people, Analysis of the social construction of 'children as carers' illustrates that researchers and pressure groups are colluding with the government's insistence that 'care in the community' must mean 'care by the community'.
Cross-cultural caregiving research: update on familism in Latino and anglo cultures
Crist, J. D., & Escandon, S.
(2009)
Culturally and Linguistically Diverse (CALD) Families Dealing with Dementia: An Examination of the Experiences and Perceptions of Multicultural Community Link Workers
Boughtwood D, Shanley C, Adams J, Santalucia Y, Kyriazopoulos H, Pond D, et al.
(2012)
Dementia is a chronic illness involving increasing levels of care, often provided by family members, particularly in culturally and linguistically diverse (CALD) communities. Multicultural community link workers are often the primary service providers assisting families to access health and welfare services and as such have extensive experience of, and possess in-depth knowledge about, CALD family care-giving for dementia. While research has been undertaken on dementia in CALD communities, this research has not focused on the experiences and perceptions of these multicultural workers with regards to CALD family care-giving. In response to this gap in the research, this paper presents the results of an empirical investigation of multicultural workers' perspectives with regard to the cultural traditions informing CALD family care-giving, CALD families' understandings of the term 'carer' and family arrangements regarding care. Due to their close relationship and knowledge of families, multicultural workers can offer an important perspective that is invaluable in informing the provision of carer education and support within CALD communities.
Current and residual functional disability associated with psychopathology: Findings from the Netherlands Mental Health Survey and Incidence Study (NEMESIS).
Bijl AV, Ravelli A.
(2000)
Background. Few population studies have investigated the functional disabilities that accompany specific psychiatric diagnoses. This study assesses the nature and strength of current and residual impairments in various functional domains of life.
Methods. Data were derived from the Netherlands Mental Health Survey and Incidence Study (NEMESIS), a prospective study in the Dutch general population aged 18 to 64 (N = 7147). Psychiatric diagnoses were based on the Composite International Diagnostic Interview; functional disability was assessed on the basis of the Short-Form-36 and the number of disability days.
Results. Psychopathology was associated with increased disability in social, emotional and physical domains of life. Disability levels varied by psychiatric diagnosis, with mood disorders showing the poorest levels of functioning, especially for vitality and social functioning; alcohol-related disorders were associated with few disabilities. Co-morbidity strongly aggravated the disability. The effect of contextual factors on disability was limited, although somatic ill health, unemployment and adverse youth history increased the likelihood of functional disability. The findings indicate that psychopathology can also have residual debilitating effects.
Conclusions. Mental health care providers should be aware that the extent and the type of disability may vary with the different types of disorders and among different groups within the population. Since recovery from functional limitations may not be complete or may take more time than the remission of the psychiatric symptomatology, non-psychiatric follow-up care is needed. The high number of lost work days is relevant from an economic perspective. There is a need for illness-specific disability assessment instruments.
Dagboken – för dig som är ung och har någon som är sjuk i familjen
Katrin Bartfai Jansson och Bettina Edgren
(2011)
Fyll-i-böcker om barnens första tid och dina vänner har blivit allt fantasifullare. De hjälper oss att fästa speciella ögonblick på papper, så att vi inte glömmer bort dem i vardagssurret. Men vad händer när vardagen försvinner? När din mamma eller pappa drabbas av en allvarlig sjukdom förändras hela livet. Många ungdomar, som varit med om det har berättat att de inte kunde prata med någon när de hade det som svårast. De som skriver dagbok får en ventil från familjens oro och ett sätt att bearbeta sina egna tankar. Men det är inte så lätt att komma igång med en dagbok.
Dagboken- för dig som är ung och har en sjuk förälder är en hjälp på vägen. Med frågor och rubriker kommer dagboksskrivandet igång. Ett yngre skolbarn kan läsa och skriva tillsammans med en vuxen, för en tonåring kan det vara en hemlig dagbok. Det finns ingen övre åldersgräns. Gott om plats för egna skriverier när du kommit igång, och för bilder.
Daglig verksamhet enligt LSS – en kartläggning
Socialstyrelsen
(2008)
Daglig verksamhet är en av de tio insatserna i lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Det är också den insats som flest personer har. Antalet personer med daglig verksamhet har ökat från 20 500 år 2000 till 25 800 år 2006. Kostnader per person i daglig verksamhet sjönk under samma tid med tio procent. Mot denna bakgrund, och på grund av att Socialstyrelsen från enskilda personer, från brukarorganisationer och från yrkesverksamma inom området har fått signaler om brister i kvaliteten, tog Socialstyrelsen initiativ till denna kartläggning av daglig verksamhet enligt LSS.
Bilden som framträder genom kartläggningen är att utbudet av aktiviteter inom den dagliga verksamheten är stort. Trots detta finns det svårigheter för kommunerna att i vissa fall finna verksamheter som passar varje enskild person.
Traditionellt har daglig verksamhet varit organiserad som gruppverksamhet i särskilda lokaler. Utvecklingen har gått mot mer flexibla former, t.ex. utflyttade grupper som finns på olika företag. Av dem som har beslut om daglig verksamhet har i dag cirka 15 procent detta i form av en individuell placering på en ordinarie arbetsplats. Variationen är dock stor mellan olika kommuner.
Kommuner organiserar sin verksamhet på olika sätt. Vilka nämnder som har ansvaret för daglig verksamhet enligt LSS varierar. Totalt sett har cirka åtta procent av dem som har daglig verksamhet detta i enskild regi. I storstadsregionerna däremot är motsvarande siffra 21 procent. Kartläggningen har inte kunnat visa på några större skillnader mellan kommunal och enskild verksamhet, när det gäller verksamhetens innehåll.
Utmaningen för den dagliga verksamheten ligger i att vidareutveckla både innehållet och formerna för verksamheten samt att öppna vägen till arbetslivet.
Socialstyrelsen kan konstatera att det övergripande målet med daglig verksamhet, att den enskilde på sikt ska kunna få möjlighet till lönearbete, inte uppfylls. Övergångar till ett sådant arbete är näst intill obefintliga. Den dagliga verksamheten riskerar att bidra till en inlåsningseffekt då andra aktörer inom arbetsmarknadspolitikens fält inte ser denna grupp som sin målgrupp. Samverkan mellan daglig verksamhet och andra arbetsmarknadspolitiska aktörer brister. Den måste utvecklas för att målet ska nås.
Traditionellt finns det god kunskap för och erfarenhet av att ge personer med utvecklingsstörning eller med ett stort omvårdnadsbehov en daglig verksamhet med god kvalitet. Det är angeläget att även denna del av verksamheten utvecklas så att inte dessa personers behov kommer i skymundan för de nya behov som ställs på verksamheten.
Dags att kasta ut Beställar-Utförarmodellen i äldreomsorgen!?
Johansson, L.
(2006)
Dagverksamhet och öppna verksamheter för äldre samt träffpunkter för anhörigvårdare.
Gustavsson, A.
(2007)
Dagvård som avlastning för anhöriga
Måvall, L.
(2004)
Daily life for young adults who care for a person with mental illness: a qualitative study
Ali, Lilas, Ahlström Hedman, Britt, Krevers, Barbro, Skärsäter, Ingela
(2011)
This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16–25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.
Daily life of persons with dementia and their spouses supported by a passive positioning alarm
Olsson, A.
(2013)
Danish home care policy and the family: Implications for the United Sates.
Stuart, M., & Hansen, E. B.
(2006)
Dartingtonprojektet – en försöksverksamhet för att stärka och utveckla familjevården
Socialstyrelsen
(2002)
Daughters as Caregivers of Aging Parents: The Shattering Myth
Ron, P.
(2009)
Daughters as Caregivers of Aging Parents: The Shattering Myth
Ron, P.
(2009)
Day care as respite for family members
Måvall, L., & Malmberg, B.
(2004)
Day care for persons with dementia: An alternative for whom?
Måvall, L., & Malmberg, B.
(2007)
De galna systrarna : fyra berättelser om att leva med ett syskon som drabbats av schizofreni
Wikström, A.
(2011)
De gamla flygande holländarna
Fereshteh, A. and L. Tornstam
(1996)
De gamla, deras anhöriga och hemtjänsten. En studie av gränslandet mellan informell och formell omsorg. Rapport i socialt arbete 22
Sundström, G.
(1984)
De har tekniken för vård på långa avstånd. (framtidens arbete).
Patmalnieks, A.
(2005)
De har tekniken för vård på långa avstånd. (framtidens arbete).
Patmalnieks, A.
(2005)
De kan, de vill och de orkar, men …: studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter
Gustafsson Wallengren, Catarina
(2009)
Akademisk avhandling nr 17
Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för närstående i deras föränderliga livssituation under de sex första månaderna efter en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter. Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående om vad det innebar att vara närstående till en person drabbad av stroke. Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs metod för kvalitativ innehållsanalys användes för att analysera data. I delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs metod för kvalitativ innehållsanalys. Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att vara närstående till en person drabbad av stroke innebar en kamp för frihet. Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser. De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade de ohälsan och dess konsekvenser i sina liv (II). Den information som närstående ville ha handlade om den strokedrabbade, de professionella och om sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat till personlig involvering, situationella faktorer, olika kunskapsbehov och sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de olika strokeenheterna (IV). Konklusion: Att bli närstående till en person som drabbats av stroke innebär att hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen beredd att ordna livet utifrån de nya förutsättningarna och därför behöver sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå8 ende i de nya och ovana livssituationerna. Att vara närstående under de sex första månaderna efter den drabbades insjuknande innebär att kämpa för frihet, dock utan att överge den drabbade (II). I denna process är det viktigt att den närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv och omsorg om den drabbade och i relation till andra anhöriga. Närstående är kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial som erbjuds närstående vid svenska strokeenheter varierar stort mellan olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar enbart om den drabbade och berör inte alls de närståendes behov eller situation. Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske hög tid att se över lagen för att undvika att närstående blir "den andra patienten i familjen".
De kan, de vill och de orkar, men… Studier av närstående till personer drabbade av stroke samt granskning av informationsmaterial från svenska strokeenheter
Wallengren Gustafsson, C.
(2009)
Syfte: Det övergripande syftet med denna avhandling var att öka förståelsen för
närstående i deras föränderliga livssituation under de sex första månaderna efter
en persons strokeinsjuknande, med särskild fokus på lärande. Vidare var syftet
att utvärdera de skriftliga informationsmaterial som erbjuds närstående vid
svenska strokeenheter.
Metod: I delstudie I, intervjuades 16 närstående om vad det innebar att bli närstående
till en person drabbad av stroke. I delstudie II, återintervjuades 9 närstående
om vad det innebar att vara närstående till en person drabbad av stroke.
Intervjuerna skedde sex månader efter den drabbades strokeinsjuknande. Data
från de båda studierna analyserades med hjälp av Lindseth och Norbergs fenomenologiska
hermeneutiska analysmetod som är inspirerad av Ricoeur. I delstudie
III, intervjuades 16 respektive 9 närstående om vad de ville veta och förstå
under de sex första månaderna efter den drabbades strokeinsjuknande. Krippendorffs
metod för kvalitativ innehållsanalys användes för att analysera data. I
delstudie IV, granskades 42 skriftliga informationsmaterial från 21 svenska
strokeenheter. Data analyserades med hjälp av beskrivande statistik och Krippendorffs
metod för kvalitativ innehållsanalys.
Resultat: Att bli närstående till en person drabbad av stroke innebar att uppleva
kaos men också att nå en vändpunkt. Den var startskottet för en febril aktivitet
som visade att närstående hade en beredskap att söka ordning i kaoset (I). Att
vara närstående till en person drabbad av stroke innebar en kamp för frihet.
Närstående ville inte anpassa sig till den drabbades ohälsa eller dess konsekvenser.
De ville välja sitt eget levnadssätt och skriva sin egen historia och därför integrerade
de ohälsan och dess konsekvenser i sina liv (II). Den information som
närstående ville ha handlade om den strokedrabbade, de professionella och om
sig själva. Dessutom visade resultatet att deras sökande efter information var relaterat
till personlig involvering, situationella faktorer, olika kunskapsbehov och
sätt att skaffa sig information (III). De skriftliga informationsmaterialen höll
adekvat kvalitet gällande inre och yttre struktur. Dessutom höll de samma nivå
när det gällde läsbarhet. Däremot varierade informationsinnehållet mellan de
olika strokeenheterna (IV).
Konklusion: Att bli närstående till en person som drabbats av stroke innebär att
hamna i kaos men också att ganska snart nå en vändpunkt (I). Vid denna är personen
beredd att ordna livet utifrån de nya förutsättningarna och därför behöver
sjuksköterskor lära sig att identifiera vändpunkter och inkludera stöd till närstå-
8
ende i de nya och ovana livssituationerna. Att vara närstående under de sex första
månaderna efter den drabbades insjuknande innebär att kämpa för frihet,
dock utan att överge den drabbade (II). I denna process är det viktigt att den
närstående får stöd i att hitta balansen mellan frihet och ansvar, mellan eget liv
och omsorg om den drabbade och i relation till andra anhöriga. Närstående är
kapabla att hantera sin föränderliga livssituation då de är aktiva, engagerade och
framåtriktade personer (I, II, III). Därför behöver alternativa pedagogiska metoder
och förhållningssätt utvecklas och testas. Sjuksköterskor behöver tränas i
att använda sådana alternativa metoder. Innehållet i de skriftliga informationsmaterial
som erbjuds närstående vid svenska strokeenheter varierar stort mellan
olika enheter (IV). Därför vore det värdefullt att etablera ett elektroniskt informationscentrum
på nationell nivå. Den svenska Hälso- och sjukvårdslagen värnar
enbart om den drabbade och berör inte alls de närståendes behov eller situation.
Med ett ökande antal äldre, och därmed ökat tryck på familjen, är det kanske
hög tid att se över lagen för att undvika att närstående blir "den andra patienten
i familjen".
Sökord: Närstående, stroke, strokeenheter, skriftliga informationsmaterial,
lärande.
De siste årene. Eldreomsorgen i Skandinavia 1960-95
Daatland SO
(1997)
De äldre i samhället – förr. Projektet Äldre i samhället – förr, nu och i framtiden
Odén, B.
(1985)
De äldre i samhället – förr. Projektet Äldre i samhället – förr, nu och i framtiden. Arbetsrapport 22.
Odén, B.
(1995)
Death and suicide among former child and adolescent psychiatric patients
Engqvist, U. and P. A. Rydelius
(2006)
BACKGROUND: Increased mortality rates among previous child and adolescent psychiatry (CAP) patients have been found in Scandinavian studies up to the 1980s. The suicide risk in this group has been estimated to be almost five times higher than expected. This article addresses two questions: Do Swedish CAP patients continue to risk premature death and what kind of information related to psychiatric symptoms and/or behavior problems can predict later suicide? METHODS: Hospital files, Sweden's census databases (including immigration and emigration) and administrative databases (including the Swedish Hospital Discharge register and the Persons Convicted of Offences register), and the Cause of Death register were examined to determine the mortality rate in a group of 1,400 former CAP inpatients and outpatients over a period of 12-33 years. Observed and expected numbers of deceased were calculated with the prospective method and the standardized mortality ratio (SMR) method. The relative risk or the risk ratio (RR) is presented with 95% confidence intervals (CIs). Significance level tests were made using two-by-two tables and chi-square tests. The Cox proportional-hazards regression model was used for survival analysis. RESULTS: Twenty-four males and 14 females died. Compared with the general population, the standardized mortality ratio in this group of CAP patients was significantly higher in both sexes. Behavioral problems, school problems, and co-morbid alcohol or drug abuse and criminality (including alcohol-related crimes) were found to be important predictors. Thirty-two deaths were attributed to suicide, intoxication, drug overdose, or accident; one patient died of an alcohol abuse-related disorder, and five patients died of natural causes. Suicide was the most common cause of death, but only 2 of these 19 cases were initially admitted for attempted suicide. CONCLUSION: We suggest that suicide and death prevention among CAP patients may not be a psychiatric issue per se but a future function of society's juvenile social-welfare investments and juvenile-delinquency prevention programs.
Deciding upon Transition to Residential Care for Persons Living with Dementia: why Do Iranian Family Caregivers Living in Sweden Cease Caregiving at Home?
Kiwi M., Hydén LC., Antelius E
(2018)
Previous research has shown how filial piety is strong among people of Iranian background and that traditional Iranian culture result in most families' preferring to care for their elderly (and sick) family members at home. While acknowledging this, this article highlights what living in diaspora could mean in terms of cultural adaption and changing family values. By interviewing people with Iranian background living in Sweden (n = 20), whom all have been former primary caregivers to a relative living with dementia, we are able to show how the decision to cease caregiving at home is taken, and what underlying factors form the basis for such decision. Results indicate that although the existence of a Persian profiled dementia care facility is crucial in the making of the decision, it is the feeling of 'sheer exhaustion' that is the main factor for ceasing care at home. And, we argue, the ability to make such a decision based upon 'being too tired' must be understood in relation to transition processes and changes in lifestyle having an affect upon cultural values in relation to filial piety. Because, at the same time the changes on cultural values might not change accordingly among the elderly who are the ones moving into residential care, resulting in them quite often being left out of the actual decision.
Decisive situations influencing spouses' support of patients with heart failure: A critical incident technique analysis
Mårtensson, J., Dracup, K., & Fridlund, B.
(2001)
Defiant children : a clinician’s manual for parent training
Barkley, R. A.
(1987)
This manual is designed to serve several purposes. First, it sets forth detailed instructions on conducting a highly effective, empirically validated program for the clinical training of parents in the management of behavior problem children. Second, it provides a series of parent handouts to be used during the course of the program. These handouts include various rating scales and forms to be completed by the parent, as well as instructions to the parent for use with each step of the program. The handouts are designed to be easy to read and brief. They are not meant to be used without training by a skilled child/family therapist. Finally, the manual outlines methods of assessment that the trainer may wish to employ in the initial evaluation of the child and family or in the periodic evaluation of treatment effects throughout training. The program was designed for children between 2 and 11 years of age. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Delaktighet i tvärinstitutionella flerpartssamtal
Bülow, P.
(2012)
Delaktighet i tvärinstitutionella flerpartssamtal
Bülow, P.
(2012)
Delaktighet och kommunikation är centrala ideal inom vård, omsorg och socialt arbete. Men vad innebär delaktighet i praktiken och hur kan teorier om delaktighet och professionella samtal förstås i olika praktiska sammanhang? Med utgångspunkt i svensk och internationell forskning ger den här boken en djupare inblick i villkor och möjligheter för professionella samtal. I ett tvärvetenskapligt perspektiv på kommunikation presenteras exempel från nya studier på vad delaktighet innebär inom en rad miljöer: nödsamtal, akut- och specialistsjukvård, äldreomsorg, biståndsbedömning, arbetsrelaterad rehabilitering och vårdutbildning.
Boken passar väl för utbildningar till sjuksköterska, socionom, arbetsterapeut, sjukgymnast och läkare. I boken beskrivs även olika metoder för datainsamling och analys av data. Det innebär att boken med fördel kan knytas till metodundervisning och examensarbete på avancerad nivå.
Redaktörerna, Pia Bülow, Daniel Persson Thunqvist & Inger Sandén, och de övriga författarna är knutna till forskarnätverket Kommunikation i vård och omsorg (KIVOS).
Pia Bülow är lektor i socialt arbete vid Avdelningen för beteendevetenskap och socialt arbete på Hälsohögskolan i Jönköping.
Inger Sandén är lektor i vårdvetenskap vid Avdelningen för specialistutbildning vid Högskolan Väst och vid Avdelningen för omvårdnad vid Hälsouniversitetet, Linköpings universitet.
Daniel Persson Thunqvist är lektor i sociologi vid Linköpings universitet.
Delaktighetsmodellen – en väg mot empowerment
Gullacksen, Ann-Christine
(2010)
Rapporten beskriver ett utvecklingsarbete inom FoU Skåne som haft som mål att finna former för brukare att framföra synpunkter, önskemål och krav på den verksamhet som de tar del av. Utgångspunkten har varit Empowerment - ett begrepp som här huvudsakligen använts för att belysa brukarnas möjlighet att bestämma över sina liv och erövra egenmakt - ett exempel på en botten-uppstrategi för inflytande.
Metoden som benämnts Delaktighetsmodellen har inspirerats av andra former för brukarinflytande som BIKVA och Lyttemöten från Danmark och BUKU från Sverige.
Rapportens första del är en beskrivning av processen och den implementering som skett i Skåne under tre år. Den andra delen kan ses som en fördjupning av motiven och en beskrivning av de bakomliggande teoretiska begreppen.
Deliberate self-harm behaviour in Swedish adolescent girls reports from public assessment and treatment agencies
Holmqvist R, Carlberg M, Hellgren L.
(2008)
Self-harming behaviour among adolescents, and particularly adolescent girls, has evoked much public attention. This article presents a Swedish study about what information assessment and treatment agencies have about self-harming behaviour in the form of cutting and burning in adolescent girls. The study was made on assignment by the Swedish National Board of Health and Welfare. All public agencies assessing or treating adolescents with psychological problems in three Swedish cities were asked to deliver information about self-harming behaviour in the form of self-cutting or self-burning in girls between 13 and 18 years of age. In addition, the young offender institutions within the National Board of Institutional Care treating teenager girls were asked to deliver information about self-harming behaviour in their clients. We found that about 1% of the total population of girls in these ages were known to have cut or burnt themselves and about one third of the girls in the institutions. Attempts to distinguish subgroups among the girls were only partly successful. Although some subgroups could be identified, the overlap between them was large. The conclusion was that this behaviour may be seen as an expression of a wide variety of problems in a heterogeneous group of young persons. © 2007 Springer Science+Business Media, LLC.
Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics
Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B.
(2003)
BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.
Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers
Holm M, Carlander I, Fürst CJ, Wengström Y, Årestedt K, Öhlen J, Henriksson A
(2015)
BACKGROUND: Family caregivers in palliative care have a need for knowledge and
support from health professionals, resulting in the need for educational and
supportive interventions. However, research has mainly focused on the experiences
of family caregivers taking part in interventions. To gain an increased
understanding of complex interventions, it is necessary to integrate the
perspectives of health professionals and family caregivers. Hence, the aim of
this study is to explore the perspectives of health professionals and family
caregivers of delivering and participating in a psycho-educational intervention
in palliative home care.
METHODS: A psycho-educational intervention was designed for family caregivers
based on a theoretical framework describing family caregiver's need for knowing,
being and doing. The intervention was delivered over three sessions, each of
which included a presentation by healthcare professionals from an intervention
manual. An interpretive descriptive design was chosen and data were collected
through focus group discussions with health professionals and individual
interviews with family caregivers. Data were analysed using framework analysis.
RESULTS: From the perspectives of both health professionals and family
caregivers, the delivering and participating in the intervention was a positive
experience. Although the content was not always adjusted to the family
caregivers' individual situation, it was perceived as valuable. Consistently, the
intervention was regarded as something that could make family caregivers better
prepared for caregiving. Health professionals found that the work with the
intervention demanded time and engagement from them and that the manual needed to
be adjusted to suit group characteristics, but the experience of delivering the
intervention was still something that gave them satisfaction and contributed to
them finding insights into their work.
CONCLUSIONS: The theoretical framework used in this study seems appropriate to
use for the design of interventions to support family caregivers. In the
perspectives of health professionals and family caregivers, the
psycho-educational intervention had important benefits and there was congruence
between the two groups in that it provided reward and support. In order for
health professionals to carry out psycho-educational interventions, they may be
in need of support and supervision as well as securing appropriate time and
resources in their everyday work.
Delivery styles and formats for different stroke information topics: patient and carer preferences
Eames S, Hoffmann T, Worrall L, Read S.
(2011)
OBJECTIVE:
To identify the preferences of patients with stroke and their carers for format and delivery style, of different categories of stroke information, and whether these preferences changed over time.
METHODS:
A semi-structured questionnaire, designed to explore preferences for four topic categories was administered to 34 acute stroke unit patients and 18 carers prior to discharge and again, 3 months after discharge to 27 of these patients and 16 of these carers.
RESULTS:
Overall format preferences were a combination of face-to-face, written and telephone for both patients and carers prior to discharge. This combination continued for carers following discharge, while patients preferred face-to-face, written and alternative formats of online and audiovisual at this time. Patients and carers most frequently preferred delivery styles appeared to be a mix of active and passive delivery styles, across all topics. Access to a telephone hotline was a popular delivery style.
CONCLUSION:
Patient and carer preferences varied, supporting the need to offer a variety of formats and delivery styles at each point of contact.
PRACTICE IMPLICATIONS:
By focusing on specific formats and delivery styles for different topics, health professionals may maximise the access to, and relevance of, stroke information for patients and their carers.
Demens - Anhörig På Liv och Död
Öhman Camilla
(2020)
Camilla Öhmans gripande berättelse om sin mamma som insjuknade och avled i en avancerad form av demenssjukdom som heter Frontallobsdemens. Boken är ärligt skriven om egna livserfarenheter och beskriver dem olika händelseförlopp och stadier i sjukdomen, bemötandet inom vården samt ger anhöriga konkreta råd på vägen. Som läsare kommer du även få ta del av guldkornen i en familjs historia om en stark kärlek, hyllningen till livet, föräldraskap och om envisheten att fortsätta kämpa fastän livet visar oss sin hårdaste sida.
Denna ljudbok är skapad för att hjälpa andra anhöriga som lever nära en person som är sjuk i en demenssjukdom men även för dem som önskar få en bättre förståelse om sjukdomen som sådan. Det är viktigt att belysa hur dessa personer med denna form av sjukdom och dess anhöriga bemöts av samhället idag. Det är dags att våga börja prata öppet om dessa sjukdomar för att påverka situationen med att se till att de demenssjuka ska få en bra vård, men även att dem anhöriga ska erhålla rätt stöd då livet för dem dagligen består av olika utmaningar och andra påfrestningar som riskerar dem själva att bli sjuka.
Demens i familien. Har kunnskaper betydning for pårörendes opplevelse av stress?
Ulstein I, Jacobsen S, Lille K-A.
(2005)
Demensförbundets anhörigenkät. Sammandrag av resultatet från enkätundersökningen
Demensförbundet
(2003)
Dementia across cultural borders: Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home
Kiwi, Mahin
(2018)
Doktorsavhandling
Introduction: Today's multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with "cultural" backgrounds other than their own. The world's population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual's lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the "old" to the "new" way of life and from a life without dementia to a life with dementia involve making sense of life's changes. Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives' decisions to end caregiving at home, and Iranian families' and relatives' attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of "home". Method: This thesis is based on more than one year's fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography. Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people. Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home. In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia's personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in. Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents' sociocultural background, generational differences and incoherence, aligned with staff members' different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person's native language was not enough to claim that they were actually communicating. Family caregivers' decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person's autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents' daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them. The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, "home", was a place to be and to live.
Dementia care consultation for family caregivers: Collaborative model linking an Alzheimer's association chapter with primary care physicians
Fortinsky, R. H., Kulldorff, M., Kleppinger, A., & Kenyon-Pesce, L
(2009)
Effect of trauma on the mental health of Palestinian children and mothers in the Gaza Strip
Thabet, A. A., Abed, Y., & Vostanis, P.
(2001)
A cross-sectional study was conducted among 286 Palestinian children 9-18 years of age and their mothers in the Gaza Strip. Traumatic events recollected by children living in areas of conflict, the prevalence of post-traumatic stress reactions and the relationship between children's and mothers' mental health were investigated. The Gaza Traumatic Events Checklist, Impact of Event Scale (IES) and General Health Questionnaire (GHQ) were used to measure outcome. Children experienced on average four traumatic events; one-third reported significant post-traumatic stress reactions. IES scores were higher among girls and mothers' GHQ scores significantly predicted children's IES scores.
Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: Design of a randomized controlled trial
Blom MM, Bosmans JE, Cuijpers P, Zarit SH, Pot AM.
(2013)
Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design: A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion: This study will provide evidence about the effectiveness and cost-effectiveness of an internet intervention for caregivers. If both can be shown, this might set the stage for the development of a range of internet interventions in the field of caregiving for people with dementia. This is even more important because future generations of caregivers will be more familiar with the use of internet.
Effectiveness of a Culturally Adapted Strengthening Families Program 12-16-Years for High-Risk Irish Families
Kumpfer KL, Xie J, O'Driscoll R.
(2012)
Background
Evidence-based programs (EBPs) targeting effective family skills are the most cost effective for improving adolescent behavioural health. Cochrane Reviews have found the Strengthening Families Program (SFP) to be the most effective substance abuse prevention intervention. Standardized cultural adaptation processes resulted in successful outcomes in several countries.
Objective
To promote wide-scale implementation and positive outcomes in Ireland, a unique model of inter-agency collaboration was developed plus guidelines for cultural adaptation with fidelity.
Methods
250 high-risk youth and families were recruited to complete SFP and its parent questionnaire. A quasi-experimental 2 group pre- and post-test design was employed where the norms were the comparison group. A 2 × 2 analysis of variance (ANOVA) generated the outcome tables including p values and Cohen's d effect sizes. Evaluation feedback was used to improve outcomes the next year.
Results
All 21 measured outcomes had statistically significant positive results. Larger effect sizes were found for the Irish families than the USA families (d = 0.57 vs. 0.48 for youth outcomes, d = 0.73 vs. 0.65 for parenting and d = 0.76 vs. 0.70 for family outcomes). Overt and covert aggression, criminality and depression decreased more in Irish youth, but the USA youth improved more in social skills.
Conclusions
This study suggests that SFP 12–16 is quite effective in reducing behavioural health problems in Irish adolescents, improving family relationships and reducing substance abuse. Additionally, the Irish interagency collaboration model is a viable solution to recruitment, retention and staffing in rural communities where finding five skilled professionals to implement SFP can be difficult.
Keywords
Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation
Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial
Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J.
(2012)
OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.
Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial
Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J.
(2012)
OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.
Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial
Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM
(2015)
BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.
Effectiveness of Child Case Management Services for Offspring of Drug-Dependent Women
Jansson LM, Svikis DS, Beilenson P.
(2003)
Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.
Effectiveness of combining tangible symbols with the Picture Exchange Communication System to teach requesting skills to children with multiple disabilities including visual impairment
Ali E, MacFarland SZ, Umbreit J.
(2011)
The Picture Exchange Communication System (PECS) is an augmentative and alternative communication (AAC) program used to teach functional requesting and commenting skills to people with disabilities (Bondy & Frost, 1993; Frost & Bondy, 2002). In this study, tangible symbols were added to PECS in teaching requesting to four students (ages 7-14) with multiple disabilities that included a visual impairment. First, an assessment was conducted to determine the preferred (i.e., reinforcing) and non-preferred items for each participant. Then, a multiple probe design across participants was used to evaluate the effectiveness of the adapted training. Data were collected across baseline, training and maintenance conditions, and generalization probes were conducted periodically throughout all conditions. All four participants learned requesting skills, generalized these skills to their classrooms, and maintained the skills after training. Recommendations are presented for future research regarding the use of adapted PECS with other AAC programs. © Division on Autism and Developmental Disabilities.
Effectiveness of culturally adapted Strengthening Families Programme 6-11 years among Portuguese families
Magalhães CCA, Kumpfer KL.
(2015)
Purpose
– The purpose of this paper is to compare the outcomes from the Portuguese Strengthening Families Programme (SFP) with those from other countries to see if they are equally effective despite the new context. SFP was selected for cultural adaptation because comparative effectiveness reviews find that SFP is the most effective parenting and family intervention (Foxcroft et al., 2003, 2012). Standardised cultural adaptations of SFP have resulted in successful outcomes in 35 countries.
Design/methodology/approach
– The outcomes for the SFP six to 11 years Portuguese families (n=41) were compared to the SFP six to 11 years international norms (n=1,600) using a quasi-experimental, non-equivalent control two group pre- and post-test design. A 2×2 ANOVA generated the outcome tables including p-values and Cohen's d effect sizes. Standardised test scales were used and measured 21 parenting, family and child risk and protective factors.
Findings
– Statistically significant positive results (p < 0.05) were found for 16 or 76.2 per cent of the 21 outcomes measured for Portuguese families. The Portuguese effect sizes were similar to the SFP international norms for improvements in the five parenting scales (d=0.61 vs 0.65), five family scales (d=0.68 vs 0.70) and seven children's scales (d=0.48 vs 0.48) despite these norms having larger effect sizes than the USA norms. Hence, the cultural adaptation did not diminish the outcomes and SFP Portuguese families can benefit substantially from SFP participation.
Originality/value
– A Portuguese culturally adapted version of SFP had never been developed or evaluated; hence, this paper reports original findings.
Effectiveness of school-based family and children's skills training for substance abuse prevention among 6-8-year-old rural children
Kumpfer KL, Alvarado R, Tait C, Turner C.
(2002)
This research tested the effectiveness of a multicomponent prevention program, Project SAFE (Strengthening America's Families and Environment), with 655 1st graders from 12 rural schools. This sample was randomly assigned to receive the I Can Problem Solve (ICPS) program (M. B. Shure & G. Spivack, 1979), alone or combined with the Strengthening Families (SF) program (K. L. Kumpfer, J. P. DeMarsh, & W. Child, 1989), or SF parent training only. Nine-month change scores revealed significantly larger improvements and effect sizes (0.35 to 1.26) on all outcome variables (school bonding, parenting skills, family relationships, social competency, and behavioral self-regulation) for the combined ICPS and SF program compared with ICPS-only or no-treatment controls. Adding parenting-only improved social competency and self-regulations more but negatively impacted family relationships, whereas adding SF improved family relationships, parenting, and school bonding more.
Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand
Oupra R, Griffiths R, Pryor J, Mott S.
(2010)
In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.
Effectiveness of the Incredible Years parent training to modify disruptive and prosocial child behavior: A meta-analytic review
Menting, A. T. A., de Castro, B. O., & Matthys, W.
(2013)
The present meta-analytic review examined effectiveness of the Incredible Years parent training (IYPT) regarding disruptive and prosocial child behavior, and aimed to explain variability in intervention outcomes. Fifty studies, in which an intervention group receiving the IYPT was compared to a comparison group immediately after intervention, were included in the analyses. Results showed that the IYPT is an effective intervention. Positive effects for distinct outcomes and distinct informants were found, including a mean effect size of d=.27 concerning disruptive child behavior across informants. For parental report, treatment studies were associated with larger effects (d=.50) than indicated (d=.20) and selective (d=.13) prevention studies. Furthermore, initial severity of child behavior revealed to be the strongest predictor of intervention effects, with larger effects for studies including more severe cases. Findings indicate that the IYPT is successful in improving child behavior in a diverse range of families, and that the parent program may be considered well-established.
Effectiveness of the Strengthening Families Programme 10–14 in Poland for the prevention of alcohol and drug misuse: protocol for a randomized controlled trial
Okulicz-Kozaryn K, Foxcroft David R.
(2012)
Background
Alcohol and other drug use and misuse is a significant problem amongst Polish youth. The SFP10-14 is a family-based prevention intervention that has positive results in US trials, but questions remain about the generalizability of these results to other countries and settings.
Methods/Design
A cluster randomized controlled trial in community settings across Poland. Communities will be randomized to a SFP10-14 trial arm or to a control arm. Recruitment and consent of families, and delivery of the SFP10-14, will be undertaken by community workers. The primary outcomes are alcohol and other drug use and misuse. Secondary (or intermediate) outcomes include parenting practices, parent–child relations, and child problem behaviour. Interview-based questionnaires will be administered at baseline, 12 and 24 months.
Discussion
The trial will provide information about the effectiveness of the SFP10-14 in Poland.
Trial registration
International Standard Randomised Controlled Trial Number: ISRCTN89673828
Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial
Ali L, Krevers B, Sjöström N, Skärsäter I
(2014)
OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.
Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial
Ali L, Krevers B, Sjöström N, Skärsäter I
(2014)
OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.
Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites
Kumpfer KL, Whiteside HO, Greene JA, Allen KC.
(2010)
Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience ( d = .76 for both), Family Organization ( d = .75), Parental Supervision ( d = .73), Parenting Efficacy ( d = .70), and Positive Parenting ( d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version ( d = .43). (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites.
Kumpfer KL, Whiteside HO, Greene JA, Allen KC.
(2010)
Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience (d = .76 for both), Family Organization (d = .75), Parental Supervision (d = .73), Parenting Efficacy (d = .70), and Positive Parenting (d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version (d = .43). (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome
Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y.
(2013)
PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).
MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.
ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.
ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.
Effects of a sexual rehabilitation intervention program on stroke patients and their spouses
Song H, Oh H, Kim H, Seo W.
(2011)
The present study was conducted to examine whether a sexual rehabilitation intervention program, which was developed during the present study and designed for stroke patients and their spouses, was effective in terms of sexual knowledge and satisfaction and frequency of sexual activity at 1 month after intervention. The study subjects were conveniently selected from stroke patients admitted to the neurology department at a university hospital located in Incheon, South Korea. A total of 46 subjects (12 couples for the experimental group and 11 couples for the control group) were included. Sexual knowledge, sexual satisfaction, frequency of sexual activity, level of cognitive function, and performance with respect to daily living activities were measured. The results obtained demonstrated that the devised sexual rehabilitation intervention program significantly increased sexual satisfaction and frequency of sexual activity, but that it did not promote sexual knowledge. The present study has meaning because the intervention program could be used as a practical guideline for post-stroke sexual rehabilitation. In addition, the findings of this study provide evidence regarding the usefulness of sexual education and counseling on the sexual health of post-stroke patients and their spouses.
Effects of a web-based stroke education program on recurrence prevention behaviors among stroke patients: a pilot study.
Kim JI, Lee S, Kim JH.
(2013)
The effectiveness of methods to prevent stroke recurrence and of education focusing on learners' needs has not been fully explored. The aims of this study were to assess the effects of such interventions among stroke patients and their primary caregivers and to evaluate the feasibility of a web-based stroke education program. The participants were 36 patients with a clinical diagnosis of ischemic stroke within 12 months post-stroke and their primary caregivers. The participants were randomly assigned to either an experimental or a control group. The primary measures included blood chemistry, self-reported health behaviors, sense of control, and health motivation for stroke patients, and caregiver mastery for caregivers. To test the feasibility of the intervention program, the rates of participation and occurrence of technical problems were calculated. The experimental group tended to improve significantly more than the control group in terms of exercise, diet, sense of control and health motivation for the stroke patients and in terms of caregiver mastery for the primary caregivers. The rate of participation in the web-based program was 63.1%. This program, which focuses on recurrence prevention in stroke patients and caregivers, has the potential to improve health behaviors for stroke patients.
Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the reach for tlc intervention study
Mahoney, D. F., Tarlow, B. J. & Jones, R. N.
(2003)
Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics
Gallant MD, Lafreniere KD.
(2003)
This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.
Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics.
Gallant MD, Lafreniere KD.
(2003)
This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.
Effects of coping skills training, group support, and information for spouses of alcoholics: A controlled randomized study
Zetterlind, U., Hansson, H., Åberg-Örbeck, K., & Berglund, M.
(2001)
Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.
Effects of early life stress on cognitive and affective function: an integrated review of human literature
Pechtel, P., & Pizzagalli, D. A.
(2011)
Abstract
RATIONALE:
The investigation of putative effects of early life stress (ELS) in humans on later behavior and neurobiology is a fast developing field. While epidemiological and neurobiological studies paint a somber picture of negative outcomes, relatively little attention has been devoted to integrating the breadth of findings concerning possible cognitive and emotional deficits associated with ELS. Emerging findings from longitudinal studies examining developmental trajectories of the brain in healthy samples may provide a new framework to understand mechanisms underlying ELS sequelae.
OBJECTIVE:
The goal of this review was twofold. The first was to summarize findings from longitudinal data on normative brain development. The second was to utilize this framework of normative brain development to interpret changes in developmental trajectories associated with deficits in cognitive and affective function following ELS.
RESULTS:
Five principles of normative brain development were identified and used to discuss behavioral and neural sequelae of ELS. Early adversity was found to be associated with deficits in a range of cognitive (cognitive performance, memory, and executive functioning) and affective (reward processing, processing of social and affective stimuli, and emotion regulation) functions.
CONCLUSION:
Three general conclusions emerge: (1) higher-order, complex cognitive and affective functions associated with brain regions undergoing protracted postnatal development are particularly vulnerable to the deleterious effects of ELS; (2) the amygdala is particularly sensitive to early ELS; and (3) several deficits, particularly those in the affective domain, appear to persist years after ELS has ceased and may increase risk for later psychopathology.
Effects of family psychoeducation on expressed emotion and burden of care in first-episode psychosis: A prospective observational study
González-Blanch, C., V. Martín-Muñoz, et al.
(2010)
The present study aimed to examine the levels and interactions of family burden (FB) and expressed emotion (EE) in first episode psychosis (FEP) patients and, secondly, to observe the potential change after a brief psychoeducational group intervention implemented in a real world clinical setting. Twenty-three key relatives of FEP patients received a brief psychoeducational group intervention. FB and EE were assessed before and after the intervention. EE-change and correlations between variables were examined. Half of the sample of key-relatives showed high levels of EE. No severe family burden was observed. FB and EE did not change after the intervention. Family subjective and objective burden were correlated with emotional overinvolvement, but not with criticism. Brief psychoeducational groups may not be sufficient to reduce FB and EE associated to the experience of caregiving for a family member with a first-episode psychotic disorder. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Effects of Four Therapy Procedures on Communication in People with Profound Intellectual Disabilities
Lindsay WR, Black E, Broxholme S, Pitcaithly D, Hornsby N, Lindsay B.
(2001)
A number of alternative therapies have recently been employed with people who have intellectual disabilities (IDs). The present study examines the effects of four frequently used therapies on the communication of people with profound ID. Communication was assessed using five measures of positive communication and five measures of negative communication. The therapies assessed were Snoezelen, active therapy, relaxation and aromatherapy/hand massage. There were eight participants in the present study and each received all four of the therapeutic procedures in a counterbalanced design. Treatment procedures were videotaped at sessions 5, 10, 15 and 20, and later scored for defined measures of communication. Both Snoezelen and relaxation increased the level of positive communication and had some effect on decreasing negative communication. However, active therapy and aromatherapy/hand massage had little or no effect on communication. The lack of a no-treatment control is noted, especially in the light of trends seen at baseline. Considering the lack of generalization of therapeutic effects, the present results should be treated with caution.
Att få livet att gå ihop. Om lågavlönade kvinnors inkomstkällor
Yazdanpanah, S.
(2005)
Makten att forma samhället och sitt eget liv – jämställdhetspolitiken mot nya mål. 2006.66
Att fördela bistånd. Om handläggningsprocessen inom äldreomsorgen
Lindelöf, M. and E. Rönnbäck
(2004)
The aim of this dissertation is to illustrate the manner in which assistance is distributed to the elderly according to the social services law in Sweden. It will focus on the processing officers/"street-level bureaucrats" who have been assigned, based on their profession, the task of assessing and deciding about the distributing of assistance. Central issues include the manner in which process officers go about their assignement and how their actual performance appears in comparision with the prescribed course of action. The dissertation´s starting pionts are in part, the legal regulations in the form of the social service law´s material and procedural rules, and in part the role as street-level bureaucrat and the construction of the client. The data which forms the basis for the conclusions of the dissertation consists of four studies conducted during the period 1995-2001. The first investigation - The Sundsvall study - is explorative and gives a first insight into how the process officers act and document the processing of a case. The process officers study is a national investigation with process officers from 27 municipalities. This second study focuses on the various ways to organise the handling process, and how these may influence the finding for assistance. The documentation study is also a national investigation of 29 municipalities. In this third study the written documentation of the case handling process is primarily exposed. Focus groups comprise the final sorce of data in which a group of processors in tree municipalities discuss their work. The process officers in the focus group describe several usual situations. With support from the various investigations, a picture appears which does not agree with prescribed course of action according to the legislation. What appears instead is a pattern of action which probably already existed before we began this work and which likely continues. This pattern of action has as we have established two faces, one of which constitutes an informal process where the actual construction of the "help-seeker" take place. Whitin the frame for this aspect, the so-called "service catalouge" has a decisive meaning, which in it´s own way is directed towards satisfying primarely physical and medical needs. The other "face" displays the formalised expresson of the informal process. This formal expression does not reveal all that is going on, only chosen elements. The action that we have found are institutionalized as an officially sanctioned institution since the practice is widely accepted and legitimized. The public intstitution is therefore built upon a pattern of action that consists both of formal rule, but primarily standards and routines which in many regards occur outside the formal rules. The consequences of a pattern of action that has been institutionalized and legitimized affects those seeking help who do not receive the individual assessment that they have a right to according to the law.
Att förlora en förälder dödar: Vården måste ta större ansvar även för anhöriga’
Rostila, M., & Saarela J.
(2011)
Att förverkliga rättigheter genom personlig assistans
Larsson, Monica
(2008)
Doktorsavhandling 32
I denna avhandling undersöks på vilka sätt en juridisk och individuell rättighet som personlig assistans för människor med omfattande funktionshinder, kan förverkligas. Personlig assistans infördes 1994, som en del av lagen om stöd och service till vissa funktionshindrade (LSS). Avhandlingen fokuserar på hur förverkligandet kan ske främst genom lagstiftning, men också i praktiken med utgångspunkt ifrån rättighetens konstruktion.
Analysen är influerad av olika perspektiv, t.ex. rättsstatliga och välfärdsstatliga principer, men också av vissa centrala begrepp. De begrepp, som används för att förstå det empiriska materialet, är: rätt, norm och rättighet. Fallstudien används som forskningsstrategi och består av en dokumentstudie och en rättsfallsstudie. Därutöver används datamaterial från två empiriska studier där primärmaterial om personliga assistenter har samlats in.
Resultaten från studien visar att en social rättighet som personlig assistans är formad av det sammanhang och den tid den skapas i. Utformningen är också beroende av vilka intressenter som medverkar. En del av rättigheten personlig assistans är utformad som en juridisk rättighet och i rättslig mening stark. Olika normer om innehållet i rättigheten visar sig i på rättslig nivå och i praktiken. Grundläggande handikappolitiska intentioner om rättighen har påverkat praktiken och visar sig i denna som något ursprungligt och unikt. Rättigheten kan i denna mening förstås som förverkligad, även om den i stor utsträckning visar sig vara starkare som idé än som praktik.
Att ge och ta emot hjälp : anhöriginsatser för äldre och anhörigstöd : en kunskapsöversikt. Arbetsrapportserie nr 15
Hansson J-H, Jegermalm M, Whitaker A.
(2000)
Att ge omsorg mitt i livet: hur påverkar det arbete och försörjning?
Szebehely M, Ulmanen P, Sand A-B.
(2014)
Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet
Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.
Att ge omsorg mitt i livet: hur påverkar det arbete och försörjning?
Szebehely M., Ulmanen P., Sand Ann-Britt
(2014)
Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms universitet, inom ramen för projektet
Anhörigomsorgens pris: Omsorgsansvar och förvärvs-arbete i medelåldern. Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka, make, partner eller vän.
Att ge omsorg mitt i livet: hur påverkar det arbete och försörjning? Arbetsrapport 2014:1.
Szebehely, M., Ulmanen, P., & Sand, A.-B.
(2014)
Denna rapport bygger på en enkätundersökning av 3 630 personer i åldrarna 45-66 år under
våren 2013. Undersökningen har genomförts vid Institutionen för socialt arbete, Stockholms
universitet, inom ramen för projektet Anhörigomsorgens pris: Omsorgsansvar och förvärvsarbete
i medelåldern.
Syftet med rapporten är att belysa anhörigomsorgens omfattning och hur vardag, arbete och
försörjning påverkas av att ge anhörigomsorg i dagens Sverige. Med anhörigomsorg menar vi
hjälp till en anhörig eller vän som inte kan eller har stora svårigheter att klara sig själv på
grund av hög ålder, sjukdom eller funktionsnedsättning. Det kan gälla att handla, städa eller
skjutsa, sköta ekonomin och kontakter med sjukvården eller myndigheter, ge tillsyn och
känslomässigt stöd eller hjälp med hygien och mediciniering. I de flesta fall är mottagaren en
gammal förälder, men det kan också vara ett sjukt eller funktionshindrat barn, eller en maka,
make, partner eller vän.
Studien visar att 42 procent av både kvinnor och män i medelåldern ger anhörigomsorg
minst en gång i månaden. I genomsnitt ger kvinnor 5,4 timmar hjälp i veckan, män 3,8
timmar. Det är således lika vanligt att män som kvinnor är omsorgsgivare, men det är fler
kvinnor än män som ger omfattande omsorg: 6 procent av kvinnorna och 4 procent av
männen i befolkningen hjälper en närstående varje dag. I den gruppen ger kvinnorna i
genomsnitt 19 timmar hjälp i veckan, männen närmare 13 timmar.
Denna rapport visar att anhörigomsorg i dagens Sverige har betydande konsekvenser för
omsorgsgivarnas välbefinnande, vardagsliv, arbete och ekonomi. För både kvinnor och män
gäller att ju mer omsorg man ger, desto större är risken att drabbas. Samtidigt är det
vanligare bland kvinnor än bland män att omsorgsgivandet leder till negativa konsekvenser
på en rad områden.
Den allvarligaste formen av påverkan på arbetslivet är att minska sin arbetstid eller sluta
arbeta helt:
Av dem som ger anhörigomsorg minst en gång i månaden har 13 procent av kvinnorna och 8
procent av männen minskat sin arbetstid, sagt upp sig eller gått i pension tidigare än planerat
som en konsekvens av omsorgsgivandet.
Av dem som ger daglig hjälp är motsvarande andelar 32 procent av kvinnorna och 27 procent
av männen.
Uppräknat till befolkningen har drygt 90 000 kvinnor och drygt 50 000 män i åldrarna 45-66
år minskat sin arbetstid eller lämnat sitt arbete på grund anhörigomsorg.
Många får minskade inkomster som en följd av anhörigomsorg:
Av dem som ger anhörigomsorg minst en gång i månaden har 16 procent av kvinnorna och
11 procent av männen fått minskade inkomster på grund av omsorgsgivande.
Av dem som ger daglig hjälp är motsvarande andelar 40 procent av kvinnorna och 32 procent
av männen.
5
Uppräknat till befolkningen har 114 000 kvinnor och 75 000 män i åldrarna 45-66 år fått
minskade inkomster på grund av anhörigomsorg.
Kvinnors välbefinnande och vardagsliv påverkas mer än mäns av att ge anhörigomsorg, även
när vi tar hänsyn till att fler kvinnor ger omfattande hjälp:
Att omsorgsgivandet upplevs som fysiskt eller psykiskt påfrestande är nästan dubbelt så
vanligt bland kvinnor som bland män som ger anhörigomsorg minst en gång i månaden. För
mer än hälften av dessa kvinnor är omsorgsgivandet psykiskt påfrestande och för en dryg
fjärdedel är det fysiskt påfrestande.
Cirka fyra av tio kvinnor och omkring var fjärde man som hjälper minst en gång i månaden
har upplevt svårigheter att hinna med fritidsaktiviteter eller att umgås med vänner till följd
av omsorgsgivandet.
Drygt 5 procent av kvinnorna och drygt 2 procent av männen som hjälper minst en gång i
månaden har blivit sjukskrivna mer än två veckor på grund av omsorgsgivandet.
Bland dem som hjälper en närstående varje dag är alla dessa svårigheter betydligt vanligare,
framförallt bland kvinnor: tre fjärdedelar av de kvinnor som ger daglig omsorg upplever
omsorgsgivandet som psykiskt påfrestande och lika många har svårt att hinna med
fritidsaktiviteter eller att umgås med vänner; drygt hälften upplever omsorgsgivandet som
fysiskt ansträngande och nästan var femte har blivit sjukskrivna i mer två veckor. Även
många män som ger daglig omsorg är påverkade på dessa sätt, men i mindre utsträckning.
Anhörigomsorg påverkar arbetssituationen i samma utsträckning för både kvinnor och män,
förutom vad gäller svårigheter att fokusera på arbetet som drabbar fler kvinnor:
För mellan 12 och 19 procent av dem som ger anhörigomsorg minst en gång i månaden har
omsorgsgivandet medfört svårigheter att hålla sina arbetstider, att hinna med sina
arbetsuppgifter, att tacka ja till övertid eller nya uppdrag, eller att de förhindrats att delta i
möten eller kurser.
Av dem som ger daglig hjälp är motsvarande andelar mellan 33 och 39 procent.
På en punkt påverkas kvinnors arbetssituation betydligt mer än mäns av anhörigomsorg: 30
procent av de kvinnor som ger hjälp minst en gång i månaden har haft svårigheter att
fokusera på arbetet jämfört med 15 procent av männen.
Att använda semesterdagar eller andra former av betald eller obetald ledighet från arbetet
under enstaka dagar för att ge anhörigomsorg är vanligt bland både kvinnor och män. Längre
ledigheter, särskilt de som är betalda, är däremot mycket ovanliga:
Hälften av både kvinnor och män som ger anhörigomsorg minst en gång i månaden har
använt kompledighet eller flex för att ge omsorg.
Av dem som ger hjälp minst en gång i månaden har fyra av tio kvinnor och tre av tio män
använt semesterdagar för att ge omsorg.
Färre än 2 procent av dem som ger hjälp minst en gång i månaden har haft närståendepenning
och endast en halv procent har varit tjänstlediga med lön under mer än två veckor
för att ge omsorg, medan drygt 2 procent har haft motsvarande tjänstledighet utan lön.
Var tionde av dem som ger daglig hjälp har varit tjänstlediga utan lön under mer än två
veckor, vilket är tio gånger fler än de som varit tjänstlediga med lön under motsvarande
period.
6
Denna rapport visar att många kvinnor och män betalar ett högt pris för att ge anhörigomsorg
och att priset är högre ju mer omsorg de ger. En klar majoritet av de drabbade är
omsorgsgivare till äldre. Samtidigt vet vi att de flesta äldre är nöjda med äldreomsorgen och
föredrar att få hjälp därifrån, snarare än från barnen eller andra släktingar. Andelen av
hjälpbehövande äldre som får hjälp av sina barn ökat under flera decennier, samtidigt som
andelen av de äldre som får del av äldreomsorgen har minskat. Särskilt allvarlig är de senaste
årens dramatiska minskning av äldreboenden – nästan var fjärde plats har försvunnit under
2000-talet.
För att anhörigomsorg ska kunna vara ett så frivilligt val som möjligt för både den som
behöver omsorg och hans eller hennes anhöriga, krävs att samhället erbjuder olika former av
omsorgsinsatser som svarar mot individuella behov och vardagsvanor hos både äldre och
anhöriga. En väl utbyggd och väl fungerande äldreomsorg är en förutsättning för att
anhöriga till omsorgsbehövande äldre ska kunna förvärvsarbeta och försörja sig på samma
villkor som andra.
Att ge omsorg till gamla föräldrar och andra anhöriga: påverkar det relationen till arbetsmarknaden?
Szebehely, M. and P. Ulmanen
(2009)
Att ge stöd till anhöriga som vårdar eller stödjer en äldre person med demenssjukdom. Nya kunskaper om anhörigstöd, broschyr
Socialstyrelsen
(2012)
Detta är en målgruppsanpassad version av rapporten Effekter av stöd till anhöriga som vårdar äldre med demenssjukdom eller sköra äldre – en systematisk översikt. Den riktar sig till alla som arbetar med anhöriga och beskriver effektiva sätt att ge stöd till anhöriga som vårdar eller stödjer äldre med demenssjukdom.
Att ge syskon utrymme – om utveckling av hälsofrämjande stöd till syskon i familjer som har barn med funktionsnedsättning
Nordgren, Ingrid & Granat, Tina
(2009)
Att göra etnicitet : Inom äldreomsorgen (Malmö studies in international migration and ethnic relations).
Lill, L.
(2007)
Avhandling
This dissertatian i concerned with the ways in which caregivers within elderly care reason and respond to questions concerning ethnicity. The research is based on a discursive analysis of a focus group study; interwiews with caregivers; and participant observation from fieldwork within one elderly care team. The main ambition is to present an alternative model for understanding how ethnicity becomes important in relation to care. A primary purpose it to place elderly care within a new theoretical perspective, particularly by shifting the focus from ethnicity per se to the relational aspect of constructions of ethnicity. I do that by showing how the ethnic dimension often is located in language use, in the relations created by various discourses and their institutional conditions. By applying the concept of doing to the analysis of ethnicity, I can show how ethnicity is a product of social interaction rather than a pre-defined role or mode of being. To do ethnicity in the context of care giving is to be assigned and take discursively created subject positions through the constant interactions of the workplace. Through such an analysis it becomes possible to understand ethnicity and ethnic relations as a continuous process revolving around the conceptions of each other's identities. By employing doing ethnicity as an analytical tool, it becomes possible to understand how caregivers, sometimes unwittingly, use ethnicity as a marker for thier constructions of care.
Att handleda inom demensomsorgen : Hur personal och anhöriga kan använda "Den jagstödjande metoden" I mötet med personer med demenshandikapp
Cars, J., & Zander, B.
(2002)
Att hjälpa den som hjälper. En tillsyn av kommunernas stöd till anhörigvårdare, meddelande 2005:05
Länstyrelsen i Kronobergs län
(2005)
Att invandra till Sverige på äldre dar: anpassningsmöjligheter för "sent i livet" invandrarna
Torres, S.
(2002)
Att leva med en Demenssjuk förälder
Lundström, K., Wågström, L. & Axelsson, S
(2008)
Att leva med en demenssjuk person : anhörigas behov av stöd och hjälp. Rapport 2
Andersson M, Karlsson E, Brännström B.
(2001)
Att leva med en demenssjuk person : Anhörigas upplevelse av sina vardagliga aktiviteter. (D-uppsats)
Andersson, M.
(2003)
Att leva med psykiska funktionshinder-livssituation och effektiva vård-och stödinsatser
Brunt D, Hansson L.
(2005)
Den psykiatriska vården och det offentliga stödsystemet för personer med psykisk funktionsnedsättning är i dag huvudsakligen ett samhällsbaserat servicesystem med tyngdpunkt i öppna vårdformer. Det finns emellertid uppenbara brister i systemets förmåga att möta vård- och stödbehovet hos dessa personer, liksom det finns övergripande brister i deras livssituation i samhället som helhet. Trots omfattande reformer kännetecknas fortfarande situationen för personer med psykiska funktionshinder i många avseenden av diskriminering och andra former av stigmatisering samt ekonomisk, social och politisk marginalisering och maktlöshet. Upplevelser av bristande medinflytande och kontroll över den egna vård- och stödsituationen påverkar dem också negativt.
Trots svårigheter att implementera evidensbaserade och effektiva insatser samt starka vetenskapliga belägg för att de reformer som genomdrivits i syfte att förbättra livssituationen i många avseenden inte har nått målen, finns det ändå anledning till optimism. Det här är den andra reviderade upplagan av boken, och här redovisas rehabiliteringsinsatser och andra interventioner som visar att det finns effektiva sätt att förändra situationen.
Att leva med psykisk funktionsnedsättning vänder sig till studerande inom sociala eller vårdinriktade högskoleutbildningar, men också till personer inom vård- och stödverksamheter som i arbetet möter personer med psykiska funktionsnedsättningar.
Att lära nära: stöd till kommuner för verksamhetsnära kompetensutveckling inom omsorg och vård av äldre. Kompetensstegen
SOU 2007:88
(2007)
Att möta det oväntade – tidigt föräldraskap till barn med Downs Syndrom.
Riddersporre, B.
(2003)
Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.
Att möta det oväntade – tidigt föräldraskap till barn med Downs Syndrom. (Avhandling)
Riddersporre, B
(2003)
Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.
Att möta det oväntade. Tidigt föräldraskap till barn med Downs syndrom
Riddersporre, Bim
(2003)
Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.
Att möta familjer inom vård och omsorg.
Benzein, E., Hagberg, M., & Saveman, B.-I. (Eds.).
(2012)
En individ befinner sig alltid i ett sammanhang. Därför är det av stor betydelse att fokusera välbefinnande och hälsa utifrån ett familjeperspektiv. Familjen spelar en allt större roll inom vård och omsorg och har fått allt större betydelse även för vård- och omsorgspersonal. Att hjälpa familjen att se styrkor och resurser för att hantera situationer av ohälsa och sjukdom är därför en viktig del i omvårdnadsarbetet.
Att möta familjer inom vård och omsorg beskriver teoretiska grunder för familjefokuserad omvårdnad och ger konkreta exempel från olika kontexter. Här presenteras också hur ett familjefokuserat synsätt kan implementeras i vård, omsorg och forskning som ett komplement till rådande perspektiv i vården, såsom till exempel personcentrerad vård, patientcentrerad vård och anhörigvård. Boken vänder sig till studenter inom vård och omsorg på grund- och avancerad nivå, samt till yrkesverksamma, anhörigvårdare, eller andra med intresse för familjers situation när en familjemedlem drabbas av ohälsa eller sjukdom.
Att möta flyktingar
Angel, B., & Hjern , A.
(2004)
Boken ger grundläggande kunskaper om flyktingars livsvillkor i ursprungslandet och i exilen. Den tar upp upplevda traumatiska händelser som politisk förföljelse, förtryck, fängelse, krig och allvarliga förluster.
Mötet mellan flyktingen och Sverige och den psykologiska process som därvid uppstår – flyktingkrisen – analyseras också.
En avsevärd del av boken ägnas insatser och åtgärder för nyanlända flyktingar.
Att möta flyktingar vänder sig i första hand till studenter och personal inom vården och socialtjänsten. Även andra som möter flyktingar inom t.ex. skolor, frivilligorganisationer eller på förläggningar kan ha nytta av den.
Att möta och bemöta anhöriga i äldreomsorgen
Normann, M., & Fröling, K
(2008)
Nära och kära - att möta och bemöta anhöriga i äldreomsorgen ger dig som arbetar i äldreomsorgen vägledning i vad som är viktigt att tänka på i mötet med de anhöriga. Bokens första del handlar om människans villkor och förutsättningar för kommunikation och är giltiga för de flesta arbetsplatser inom vård och omsorg. I bokens andra del anpassas kunskaperna på mötet med anhöriga och anhörigvårdare till äldre, sjuka och funktionshindrade. I boken finns också förslag till reflektioner, egna och i grupp, samt tips för vidare läsning.
Den senaste upplagan, utgiven oktober 2010, är utökad med ett kapitel som beskriver en äldres situation ur fem olika perspektiv: den anhöriga, sjukgymnasten, kontaktpersonen, chefen på äldreboendet samt biståndshandläggaren. Alla skapar sin bild utifrån sina förutsättningar och kapitlet ger en insikt i den komplexitet som finns inom äldreomsorgen.
Nära och kära är skriven för personal inom äldreomsorgen. Men den får gärna inspirera alla som i sitt yrke möter anhöriga! Författare är Margareta Normann och Kristina Fröling .
Att mötas i samtal. Samtalet som redskap i kommunikationen mellan hemmet och skolan
Rönnqvist, L.
(2008)
Att planera för boendestöd. Om planer, trepartssamtal och klientmedverkan i socialpsykiatrin
Ingemarsson, Maria, Bergmark, Åke & Lundström, Tommy
(2006)
Att pussla ihop ett liv : om samverkan
Swärd A-K., Franke M-L.
(2007)
Den enda existerande bokenom samverkan från ett föräldraperspektiv! Den teoretiska delen om autism är mycket lättförståelig och problematiseringen utgår från FN:s regler om funtionshider som ett problem i relation till omgivningen. Texten föreslår ett förhållningssätt som bygger på samarbete kring barnets starka sidor. Boken granska också kritiskt kommunernas förmåga att organisera hjälp och stöd för de drabbade familjerna enligt LSS-lagstiftningen
Att samtala med föräldrar om syskonens situation
Tallborn Dellve, Andreas
(2009)
Att släppa taget om den andre och att greppa tag om sig själv
Wiberg, Maria
(2006)
Upplands Väsby kommun tillhör en av de få kommuner i landet som bedriver ett strukturerat
anhörigprogram. Trots att det funnits någon form av anhörigarbete i ca 15 år, de senaste 5 åren
med tydligare struktur, har verksamheten hittills inte dokumenterats.
Syftet med denna rapport är att ge en utförlig beskrivning av anhörigprogrammets innehåll,
struktur och förutsättningar. Rapporten vill också skapa en förståelse för den anhöriges
livssituation och behov av egen hjälp. "Vad familjen behöver är undervisning om drogen alkohol,
vilka problem det kroniska missbruket ger upphov till samt sjukdomen alkoholism. Familjen
behöver dessutom lära sig hur sjukdomssymtomen påverkar familjen. Familjen behöver även
hjälp med att kartlägga det egna beteendet för att förstå hur det kan överensstämma med, eller till
och med befrämja alkoholistens drickande. De måste också komma till insikt om sina egna
känslor för att realistiskt kunna förstå problemets dimensioner och vad som krävs av dem. Till
följd av detta måste de undersöka vilka alternativ de har att välja mellan för att lösa problemet.
Framför allt behöver familjemedlemmarna stöd och uppmuntran för att kunna leva sina egna liv
trots alkoholismen. Genom att göra det ökar, paradoxalt nog, chanserna att avbryta den
alkoholistiska processen" (Kinney o Leaton 1997).
Ytterligare ett syfte med rapporten är att mäta om programmet ökar den anhöriges psykiska
välbefinnande, och om programmet påverkar den anhörige beteendemönster och känslor i
relation till den beroende.
Metoden jag använt för att hitta svaren på den första frågan har varit att sammanställa det
material som finns runt de olika temana.
För att få svar på de två andra frågeställningarna har jag använt en självskattningsenkät. Dvs.
deltagarna har själva uppskattat sitt mående utifrån en enkät med 4 svarsalternativ. Mätningen har
skett vid tre tillfällen, före programmet, vid programmets slut och en månad efter programmets
slut. Antal deltagare i utvärderingen är 15 personer, uppdelat på tre olika anhörigprogram.
En svaghet med denna metod är att utvärderingen sträcker sig under en relativt kort tid. Från
första till sista mättillfället är det ca 12 veckor. Förändringsprocesser tar lång tid och för att få en
mer rättvis bild av programmets påverkan skulle en mätning efter ytterligare ett år behövas.
En ytterligare svaghet är att deltagarantalet i utvärderingen är litet. Det går därför inte att dra
några stora slutsatser av resultatet, utan snarare tendenser. Det är dock en god ansats till ett
fortsatt arbete med utvärdering av programmet. Självskattningsenkät har visat sig vara ett
fungerande kvalitetsmätningsinstrument.
Dispositionen på rapporten är följande: Del 1 innehåller den beskrivande delen av
anhörigprogrammet med en historisk tillbakablick. Del 2 är den utvärderande delen av rapporten,
där undersökningsmetoden och sammanställningen av enkätundersökningarna redovisas.
Resultaten visar att det psykiska välbefinnandet tydligt ökar för alla tre grupper över tid. Takten
för ökningen ser olika ut och det kan härledas till deltagarnas olika livssituationer under
programmet. Där deltagarna fortfarande lever med partner i ett aktivt missbruk är den anhöriges
förändring långsammare. Resultatet visar också att deltagarna upplever en förändring i huruvida
de påverkats av sin anhöriges missbruk i såväl känslor som beteendemönster. Denna förändring
är mindre samstämmig och visar ganska stora variationer i de olika grupperna.
Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar
Skerfving, Annemi
(2005)
Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.
Att synliggöra de osynliga barnen – om barn till psykiskt sjuka föräldrar
Skerfving, A.
(2005)
Att synliggöra de osynliga barnen ger en bred kunskapsbas om barn till psykiskt sjuka. Den kan användas som en "lärobok" av alla som kommer i kontakt med barn vars föräldrar lider av svåra och långvariga psykiska problem. Boken riktar sig till personal inom vuxen- och barnpsykiatri, socialtjänst, skola, barnomsorg och hälsovård, till studenter vid olika utbildningar, men också till anhöriga och vänner till psykiskt sjuka.
Att synliggöra det osynliga : utvärdering av en ny handläggningsmodell och nya former för anhörigstöd
Socialstyrelsen
(2002)
Att tala samma språk. Gemensam struktur vid bedömning av vårdbidrag
Enström Öst C, Agdalen T, Aydin E, Josephson M, Mirjam W.
(2013)
Syftet med studien är att pröva om struktur och språk enligt Klassifikation av funktionstillstånd, funktionshinder och hälsa, barn- och ungdomsversionen, ICF-CY, kan användas vid handläggning av vårdbidragsärenden för att göra utredningar och beslut tydligare och mer enhetliga och därigenom förbättra rättssäkerheten. I tillämpningen av reglerna om vårdbidrag ska Försäkringskassan göra en individuell bedömning i varje enskilt ärende. Det finns också krav på likformighet och transparens i handläggningen. ICF-CY är utvecklat av Världshälsoorganisationen (WHO) och erbjuder ett universellt gemensamt språk för att underlätta dokumentation och kartläggning av barnets funktionsförmåga och hälsa i sin miljö.
Vårdbidraget är ett statligt stöd till föräldrar med barn som har en funktionsnedsättning. Syftet med vårdbidraget är att föräldrarna ska ha möjlighet att ge den tillsyn, vård och stöd som krävs för att barnet ska kunna utvecklas på bästa sätt.
Registeranalysen i rapporten visar på skillnader i vårdbidragets omfattning utifrån bland annat region, kön och mottagarens socioekonomiska tillhörighet. Tyvärr kan man inte säga om dessa skillnader är sakliga eller osakliga, det vill säga om de skillnader som observeras kan förklaras av barnens bedömda tillsyns- och vårdbehov.
Det finns inga uppgifter i register om grunderna för ett beviljat vårdbidrag, det vill säga vilken funktionsförmåga eller vilket tillsyns- och vårdbehov barnet har. I den här studien har information i 264 ärenden gällande förstagångsansökningar om vårdbidrag översatts till struktur och språk i ICF-CY. Rapporten redovisar det som finns skrivet om hur barnet fungerar i sin miljö när innehållet har översatts och tolkats.
När innehållet i utredningarna översätts, handlar merparten av utredningarna, både Försäkringskassans sammanfattningar och motiven för beslut som skickas till den sökande, om sådant som barnen kan göra och faktiskt gör, eller har svårigheter att utföra. Merparten av utredningarna berör aspekter på hur barnet genomför enstaka eller flera uppgifter och hur de hanterar krav medan endast ett fåtal utredningar handlar om hur barnet genomför dagliga sysslor och uppgifter som att ta hand om personliga föremål och att hjälpa andra.
Resultaten tyder på att en tillämpning av struktur och språk enligt ICF-CY i handläggningen av vårdbidrag skulle öka likformigheten, samtidigt som man skulle undvika att samla in irrelevant information och därigenom kunna spara tid i handläggningen. Om man klassificerar funktionsnedsättning på detta sätt, blir det också möjligt att dokumentera funktionsnedsättning i register på samma sätt som diagnos registreras idag, vilket underlättar utvärdering.
Att utgå från människan i livet istället för människan i vården. En utvärdering av patient- och närståendeutbildningar enligt Akermodellen och samtalscirklar genomförda i projektet ”Det goda livet
Johansson, Anna-Carin
(2008)
Att utveckla anhörigstöd
Genell Andrén K, Johansson L.
(2008)
Anhöriga gör stora insatser i vården och omsorgen av sina närstående. Men som anhörig kan man också behöva stöd och avlastning.
Att utveckla anhörigstöd
Matheny G.
(2013)
Att utveckla anhörigstöd
Vilka är de personer som stöttar och vårdar en närstående, vilket stöd efterfrågar de och vad kan samhället och den enskilda arbetsplatsen erbjuda? Vilken värdegrund styr bilden av de anhöriga – ses de som en värdefull resurs eller är de en belastning i arbetet kring den närstående?
Ett sätt att uppfylla målen med gällande lagstiftning är att arbetsplatserna ska formulera rutiner för hur de ska stötta och samarbeta med anhöriga i det dagliga arbetet. Boken ger praktiska verktyg för hur man steg för steg, med de anhöriga själva som sakkunniga, kan utveckla arbetsplatsens anhörigstöd. Författaren beskriver den anhörigvänliga arbetsplatsen och ger ett konkret förslag till hur rutiner för anhörigstöd och anhörigsamverkan kan tas fram. Innehållet presenteras på ett lättillgängligt sätt och läsaren får många fallbeskrivningar och förslag till diskussionsämnen att utgå ifrån.
Att utveckla anhörigstöd vänder sig till arbetsgrupper/verksamheter inom vård och omsorg samt socialtjänst som vill utveckla arbetsplatsens anhörigstöd. Utvecklingsarbetet föreslås ske genom att arbetsgruppen möts vid ett antal reflektionsträffar kring bokens innehåll. Boken vänder sig både till baspersonal och ledare, och den kan dessutom utgöra ett handfast verktyg för anhörigombud och anhörigkonsulenter som utbildar och handleder arbetsgrupper inom området anhörigstöd.
Att utveckla en modell av anhörigstöd med Basal Kroppskännedom och Samtal i grupp
Ekenberg, L.
(2010)
Syftet med denna satsning på anhörigstöd var att pröva och utveckla en mo-dell för anhörigstöd med Basal Kroppskännedom (BK) och samtalsstöd i grupp vid Länsenheten Råd och Stöd i Norrbotten. Förberedelsearbetet bestod av en kurs i BK och samtal för en sjukgymnast och en kurator. Dessa två konstruerade en enkät med frågor om den anhöri-ges relation till vårdtagaren, upplevelse av anhörigrollen, upplevelse av stöd-insatser och den anhöriges behov av förändringar. Enkäten konstruerades med idéer från ett frågeformulär använt i Socialstyrelsens "Anhörig 300" projekt. Sjukgymnasten ledde en femdagars utbildning i BK för Länsenhe-tens alla kuratorer. Sex anhöriggrupper med BK och samtal i grupp genomfördes under åren 2005-2009, en i Kalix, en i Piteå och fyra anhöriggrupper i Luleå. Antalet gruppträffar varierade mellan 8-11 träffar. I anhöriggruppen i Kalix deltog fem kvinnor, som var och en levde tillsam-mans med en man med någon form av funktionsnedsättning. I Piteå deltog två män och tre kvinnor. Tre levde i en make/maka relation, två var föräldrar och en anhörig hade ett syskon med funktionsnedsättning. I Luleå genom-fördes fyra anhöriggrupper. Anhörigkonstellationen i grupperna var män och kvinnor med anhörigrelation som make/maka och föräldrar till vuxna barn med funktionsnedsättningar. Enkätutvärdering skedde i fem anhöriggrupper som besvarades vid tre tillfäl-len: 1) vid start av anhöriggrupp 2) vid kursavslut och 3) vid uppföljning cirka 6 månader efter kursavslut. Deltagarna gavs utrymme till att direkt ef-ter BK-övningarna göra anteckningar om sina upplevelser direkt efter BK-övningarnas genomförande före gruppsamtalen. I en anhöriggrupp i Luleå var deltagandet så lågt att grupprocessen uteblev. I Kalix- Piteå- och två Lu-leågrupper medverkade deltagarna i en individuell processutvärdering om kroppsupplevelser. Resultaten av den individuella processutvärderingen visade att deltagarna upplevde BK-övningarna, som en möjlighet till en egen skön stund med av-slappning utan prestation. För många ledde detta till en större lyhördhet för kroppens signaler t.ex. om hur det är i relationen och att lägga märke till sina egna behov. Efter hand utvecklades tilliten i grupperna då deltagarna utifrån sin egen tillitsprocess öppnade sig och "vågade börja berätta". Enkätutvärde-ringen visade på marginella förändringar i skattningen av anhörigsituationen. I skattningarna framkom för makar en svag trend mot en något sämre upple-velse av anhörigsituationen medan föräldrarnas skattningar visade en svag trend mot en något bättre upplevelse av sin anhörigsituation. Kommentarer-na i enkäten bekräftade denna trend. Vår erfarenhet är att BK-övningar och samtal i grupp för anhöriga kräver en noggrann förberedelse och ett fruktbart möte/samarbete mellan kurator, sjukgymnast och gruppdeltagare. I NkAs kunskapsöversikt och i NkAs lärande nätverk framhålls Mö-tet/samtalet som "kanske som det mest underskattade anhörigstödet" (Win-qvist, 2010). Eftersom denna form av stöd saknas i dagens anhörigstöd anser vi att vår modell är ett viktigt bidrag, som borde prövas och utvärderas i stör-re skala.
Att utveckla stödet till anhöriga : en kartläggning av anhörigstöd på Östermalm
Hjalmarson, I., Norman, E.
(2012)
Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.
Att utveckla stödet till anhöriga. En kartläggning av anhörigstöd på Östermalm
Hjalmarsson, Ingrid & Norman, Eva
(2012)
Stockholms stad har antagit mål för stödet till anhöriga anpassade till den nya lagstiftningen och har också gett stadsdelsförvaltningarna bidrag för att utveckla det. I denna rapport har Äldrecentrum utvärderat det nuvarande stödet till anhöriga på Östermalm samt beräknat det framtida behovet. Resultatet ska användas i diskussioner om hur stödet till anhöriga ska utformas i framtiden. Studien visar att det finns många anhöriga på Östermalm som vårdar en närstående som inte använder vare sig de direkta eller indirekta stödinsatser som finns. Det finns flera orsaker. Alla känner inte till att det finns stöd att få, många föredrar att vårda utan hjälp och de finns också de som har provat att ta emot hjälp men inte varit nöjda. Samtidigt framkommer att det är krävande att vårda en närstående. Stress, bundenhet och oro, att inte få sova på nätterna var några av de problem som anhöriga berättade om. Det positiva var att kunna hjälpa sin närstående, få uppskattning och närhet. Personal som har kontakt med anhöriga berättade att anhöriga ofta har höga ambitioner i sitt vårdande och ofta har svårt att sätta en gräns när de inte orkar längre. Anhöriga önskade att stödinsatserna skulle vara flexibla, lättillgängliga och ges med god kontinuitet. De stödinsatser som uppskattades mest var kontakten med anhörigkonsulenten, avlösning genom växelvård, hemvårdsbidraget och dagverksamhet. Insatser som behöver förbättras var avlösning och hemtjänst främst den beviljade tiden för insatserna, kontinuiteten och pålitligheten. Förslagen som lämnas om hur anhörigstödet kan utvecklas kan användas för att utveckla anhörigstöd även för andra grupper än för äldre.
Att vara anhörig – med speciellt fokus på föräldrar – till psykiskt långtidssjuka personer
Andersson, Kristina & Östman, Margareta
(1997)
Att vara anhörig och att stödja anhöriga (DFR-rapport)
Dahlberg, L., & Edkvist, I.
(2001)
Att vara anhörig till en närstående med demenssjukdom. En jämförelse mellan storstad och landsbygd.
Forssell Ehrlich, K.
(2015)
Anhörigas insatser för en demenssjuk familjemedlem är avsevärda och är en mycket stor
samhällsresurs. Flertalet studier kring anhörigas erfarenheter har genomförts i större städer och det är
brist på kunskap kring hur landsbygdens anhöriga upplever sin situation. Det övergripande syftet
med denna avhandling var att utveckla och fördjupa kunskapen om relationen mellan boplatsen, här
storstad och landsbygd, och anhörigas upplevelser av att ge omvårdnad till en närstående med
demenssjukdom. Avhandlingens två delstudier utgår från ett socialkonstruktionistiskt perspektiv där
människan anses konstruera sina liv både i samspel med andra och med platsen de bor på. Platsen är
inte endast ett geografiskt område utan även en plats bestående av sociala relationer. Anhöriga i
storstaden och på landsbygden antogs forma sina liv på olika sätt som kunde påverka situationen som
anhörigvårdare. Syftet med studie I var att beskriva och jämföra anhörigas reaktioner på att ge
omvårdnad till en närstående med demenssjukdom, i storstad och på landsbygd, samt att undersöka
sambanden mellan aspekter på vårdande och socio-demografiska faktorer. Den genomfördes som en
prospektiv tvärsnittsstudie med sammanlagt 102 (57 storstad+45 landsbygd) deltagare. Den svenska
versionen av The Caregiver Reaction Assessment Scale (CRA) användes och bestod av 27 positiva
och negativa påståenden fördelade inom fem delområden ("vårdar-tillfredställelse"; brist på
familjestöd; påverkan på ekonomi, hälsa och vardagsliv). Data analyserades med beskrivande statistik.
Student´s T-test användes för att undersöka skillnader, Chi-2-tester för proportioner och linjär
regressionsanalys användes för att undersöka sambanden mellan de fem delområdena och sociodemografiska
variabler. Syftet med studie II var att utveckla en fördjupad förståelse för anhörigas
förhållningssätt till sin situation, i storstad och på landsbygd, när en närstående drabbats av
demenssjukdom. Narrativa intervjuer genomfördes med sammanlagt 23 anhöriga (11 storstad+12
landsbygd). Frågorna berörde vardagsliv och arbete både nu, med en demenssjuk närstående, och
tidigare, samt boplatsens och det sociala livets betydelse. Intervjuerna analyserades utifrån en
hermeneutisk ansats. Resultatet från regressionsanalysen visade att vare sig boplats eller
utbildningsnivå hade något samband med hur anhöriga skattade sin situation (I). Flertalet anhöriga
både på landsbygden och i storstaden kände däremot en tillfredställelse med att kunna ta hand om sin
närstående trots att situationen hade stor påverkan på vardagslivet (I-II). De vuxna barnen upplevde en
konflikt mellan sina och den egna familjens behov och den sjuke förälderns omvårdnadsbehov (II)
som påverkade vardagslivet i högre utsträckning än vad det gjorde för de makar som vårdade sin
partner (I). Kvinnorna skattade en större påverkan på ekonomin och mer påverkan på vardagslivet än
männen. Men anhöriga på landsbygden tycktes få mer hjälp från familj och andra än de i storstaden
(I). Intervjustudien visade att de anhöriga på landsbygden tycktes ha en mer kollektiv syn på familjen
och parrelationen som kom till uttryck i en större acceptans för livets gång och behov av att bevara det
normala livet. Storstadens anhörigvårdare däremot tycktes ha en mer individualistisk syn, vilket kom
till uttryck i en större frustration över situationen mer präglad av pliktuppfyllelse (II). Det är
förmodligen är lika belastande vara anhörig till en närstående med demenssjukdom vare sig man bor i
storstaden eller på landsbygden. Samtidigt fanns det en variation av förhållningssätt till situationen
som anhörigvårdare, som påverkades av olika sättet att se sig på själv i förhållande till familjen och
parrelationen, vilket får implikationer för utformningen av stödinsatser.
Key words: dementia, family caregivers, qualitative research, narrative interviews, Caregiver Reaction
Assessment Scale (CRA), regression model, urban and rural areas, nursing
Att vara anhörig till någon som vårdas i hemmet eller i särskilt boende
Svenska Röda korset
(2007)
Att vara anhörigvårdare : Fokusgrupper samtalar om dilemman, känslor och behov
Källtorp, O., & Uggla, C.
(2003)
Att vara anhörigvårdare : Fokusgrupper samtalar om dilemman, känslor och behov.
Källtorp, O. and C. Uggla
(2003)
Att vara anhörigvårdare till en person med demenssjukdom : En litteraturstudie
Gustafson, M., & Rautio, U.
(2002)
Att vara ett mänskligt hjälpmedel. En studie om att arbeta som personlig assistent
Larsson, Monica & Larsson, Stig
(2004)
Att vara förälder till barn med ADHD.
Hellström A.
(2007)
Broschyren ger en kortfattad introduktion till vad ADHD är, hur det kommer till uttryck i vardagen, vad vi vet om orsakerna, bemötande och förhållningssätt samt vilken behandling som finns att få.
Att vara förälder till barn med funktionsnedsättning – erfarenheter av stöd och av att vara professionell stödjare
Lindblad, B.-M.
(2006)
Avhandlingens övergripande syfte är att tolka och beskriva innebörder av stöd,
utifrån att vara förälder till barn med funktionsnedsättning och att vara professionella
stödjare. Datainsamling har skett i form av berättande intervjuer med
39 föräldrar (23 mödrar och 16 fäder) och 9 professionella (7 kvinnor, 2 män)
från olika verksamheter. Samtliga intervjuer har analyserats med hjälp av fenomenologisk
hermeneutisk metod.
Innebörder av att vara förälder till barn med funktionsnedsättning (studie I)
har tolkats som en medvetenhet om viktiga värden i livet. Barnet har ett inneboende
värde som en unik person och föräldrarna strävar efter att göra sitt
bästa för barnet. Denna strävan innebär att konfrontera oro, osäkerhet och
rädsla i vården av barnet och andra personers nedvärdering av barnet. I föräldrarnas
strävan att tillmötesgå barnets olika behov, ingår också att anpassa egna
behov efter barnets. Den fördjupade förståelsen av studiens resultat är, att det
handlar om en strävan att möjliggöra för barnet att leva ett gott liv.
Innebörder av att få stöd av professionella (studie II) har tolkats som att
föräldrar och barn blir bekräftade som värdefulla personer och att föräldrarna
uppnår trygghet och kompetens i föräldraskapet och får ett hopp för barnets
framtid. Erfarenheter av att inte få stöd, medför en kamp mot de professionella,
för att kräva det stöd som föräldrarna anser att de och barnet behöver.
Innebörder av att vara professionell stödjare (studie III), består av att ha
personlig filosofi, som är integrerat i sättet att vara och handla som stödjare.
Det innebär att vara trygg i hoppet om att det alltid går att göra något för att
hjälpa, genom att söka unika lösningar i den aktuella situationen. Tillit till för-
äldrar som partners och att få deras tillit, samt att möjliggöra för föräldrarna att
uppnå kompetens och trygghet i vården av sina barn är andra innebörder. Detta
har tolkats som en frihet från att vara bunden av byråkrati och prestige och en
möjlighet att vara äkta, följa sin filosofi och att vara i samklang med barn och
föräldrar.
Innebörder av informellt stöd (studie IV) har tolkats som en livsberikande
gemenskap, där barnet, innefattas i kärleksfulla relationer med närstående och
har en naturlig plats i samhället. Att som föräldrar kunna dela glädje, oro och
sorg med andra personer och att få möjlighet att uppleva lättnad och spontanitet
i det dagliga livet, är andra innebörder av informellt stöd. Helhetsförståelsen
av de fyra studierna är, att stöd av professionella i sin tur är ett stöd i föräldrars
etiska förpliktelse i deras strävan att möjliggöra för barnet att leva ett gott liv.
Informellt stöd betyder att föräldrar och barn är inneslutna i trofasta och berikande
relationer med andra.
Att vara gammal och akut sjuk : Vårdtagares, anhörigas och vårdgivares erfarenheter inom Gävleborgs och Örebro län
Kihlgren, A.
(2005)
Att vara närståendevårdare inom palliativ vård i hemmet : Från kontroll till förlust av kontroll
Munck, B., & Mårtensson, J.
(2006)
Att vara närståendevårdare inom palliativ vård i hemmet : från kontroll till förlust av kontroll.
Munck, B. and J. Mårtensson
(2006)
Att vara sin sjukdom: Om psykiskt funktionshinder och åldrande.
Bülow, Per & Svensson, Tommy
(2008)
Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov. Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga. Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.
Att vara syskon
Norén, Kristina & Sommarström, Inga
(2006)
Att vara syskon till ett barn eller ungdom med cancersjukdom – tankar, behov, problem och stöd
Nolbris, M.
(2009)
Doktorsavhandling
The overall aim was to describe the siblings' thoughts on and experiences of needs, problems and supports when their brother or sister is being treated or undergoing follow-ups for or has died of cancer. The thesis uses a life-world perspective with open interviews (Papers I-IV). It describes the siblings' needs and issues when a brother or sister dies of cancer n=10 (Paper I), and it develops an understanding of the everyday experiences of siblings with a brother or sister who is receiving or has completed treatment for a cancer disease n=10 (Paper II). The thesis looks at the siblings' thoughts on their experiences of being a sibling of a brother or sister during his or her treatment or who has been treated for or has died from cancer n=20 (Paper III). The thesis also describes the siblings' experiences of being involved in a therapeutic support group when the family had or had had a child with cancer n=15 (Paper IV). The methods used to analyse the interview texts were qualitative content analysis (I, III, IV) and phenomenological hermeneutic analysis (II). The findings show that the sibling relationships strengthened. The siblings lacked support and felt they were not being given information. There was underlying anxiety and loneliness. There was a new consideration in their daily life with the sick brother or sister constantly at the centre. It was very important that the family felt well. Thoughts about death were not allowed and they tried to repress them. Anticipatory grief started already with the diagnosis. The grief when a brother or sister dies varies over time and in how it manifests itself, and there are short breaks. Therapeutic support groups with tools such as pictures and paintings validated the siblings' feelings and gave them support regardless of their age and sex. The results demonstrate a need to preserve the sibling's health. Consideration and respect for all family members may lessen suffering. Regular and appropriate information about the disease, treatment and the patient's condition is needed, as well as the offer of therapeutic support, individually or in groups.
Att vilja se, vilja veta och att våga fråga – vägledning för att öka förutsättningarna att upptäcka våldsutsatthet
Socialstyrelsen
(2014)
Våld i nära relationer är ett folkhälsoproblem, med allvarliga fysiska och psykiska konsekvenser för den som utsätts och kan även leda till svåra sociala problem. Vanligast är att kvinnor utsätts för våld i nära relationer, och den som utövar våldet är oftast en manlig partner eller före detta partner. Barn som tvingas bevittna våld i sin närmiljö riskerar att fara mycket illa. Den i särklass allvarligaste riskfaktorn för barnmisshandel är om det förekommer våld mellan vuxna i hemmet.
Många våldsutsatta kvinnor söker hälso- och sjukvård för diffusa fysiska och psykiska symtom, men de berättar sällan om våldet eftersom de inte alltid sätter sina hälsoproblem i samband med våldsutsattheten. Många våldsutsatta kvinnor söker sig även till socialtjänsten för att få stöd och hjälp, exempelvis med ansökan om ekonomiskt bistånd eller andra insatser, utan att de berättar om våldet de blir utsatta för.
En förutsättning för att våldsutsatta ska få adekvat vård, stöd och hjälp är att våldsutsattheten upptäcks. Att personal inom hälso- och sjukvården och socialtjänsten frågar om erfarenhet av våld kan underlätta för den våldsutsatta att berätta om sin situation och att söka stöd och hjälp.
Socialstyrelsen rekommenderar hälso- och sjukvården att alla kvinnor som uppsöker mödrahälsovården bör tillfrågas om erfarenhet av våld. Det vetenskapliga stödet för denna rekommendation är forskning som visar att rutinfrågor inom mödrahälsovården markant ökar upptäckten av våld. Mödrahälsovården lyfts också fram som en lämplig verksamhet att ställa frågor i, eftersom de gravida kvinnorna befinner sig i en viktig fas i livet och ofta kan ha en regelbunden kontakt med personalen. Även WHO anger mödrahälsovården som en verksamhet där rutinfrågor om våld kan ställas.
Socialstyrelsen rekommenderar att hälso- och sjukvården bör fråga alla kvinnor som uppsöker psykiatrisk vård om erfarenhet av våld. Våldsutsatta kvinnor är överrepresenterade inom den psykiatriska vården. Våld i nära relationer kan även leda till allvarlig psykisk ohälsa. WHO har framhållit att rutinfrågor om våld kan vara en del av god klinisk praxis, särskilt eftersom detta kan påverka behandling och vård av den våldsutsatta.
Socialstyrelsen rekommenderar att hälso- och sjukvården bör ta upp frågan om våld i alla ärenden inom barn- och ungdomspsykiatrin (BUP). Forskning visar att psykisk ohälsa är vanlig hos barn som lever med våld i familjen. Att ta upp frågan om våld i alla ärenden inom BUP kan innebära att upptäckten av barn som bevittnat våld ökar och, liksom inom vuxenpsykiatrin, utgöra en del av god klinisk praxis.
Nästa steg i arbetet blir att ta fram rekommendationer för missbruks- och beroendevården.
Socialstyrelsen rekommenderar hälso- och sjukvården och socialtjänsten att erbjuda personal fortbildning om våld i nära relationer, i syfte att upptäcka våldet. En anledning till att personal idag inte ställer frågor om våld kan vara att man anser sig ha otillräckliga kunskaper och saknar beredskap för att hantera svaret. Därför är det angeläget att öka kunskaperna inom hälso- och sjukvården och socialtjänsten om våld i nära relationer.
Att våga vara nära
Ferm, M. and J. Beskow
(2008)
Att vårda en anhörig med demens
Lundqvist, M.
(2006)
Att växa mot alla odds. Från födelse till vuxenliv
Werner, E.E. & Smith, R.S.
(2003)
Att växa upp med föräldrar som har missbruksproblem eller psykisk sjukdom – hur ser livet ut i ung vuxen ålder?
Hjern, A., Arat, A., Vinnerljung, B.
(2014)
Rapport 4 från projektet "Barn som anhöriga" från CHESS, Stockholms universitet/Karolinska Institutet i samarbete med Institutionen för socialt arbete vid Stockholms universitet.
Rapporten belyser hälsa och livsvillkor för unga vuxna i åldern 30-35 år i en anhöriggrupp som växt upp med föräldrar som vårdades på sjukhus på grund av missbruk och/eller psykisk sjukdom, och baseras i sin helhet på uppgifter från nationella register.
Att åldras med funktionshinder
Jeppsson-Grassman, Eva (red.)
(2008)
Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov.
Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga.
Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.
Attachment and loss: Volume 1 Attachment
BOWLBY, J.
(1969)
Attachment and Loss; Attachment. Vol 1
Bowlby, J.
(1969)
Attachment at Early School Age and Developmental Risk: Examining Family Contexts and Behavior Problems of Controlling–Caregiving, Controlling–Punitive, and Behaviorally Disorganized Children
Moss, E., Cyr, C., & Dubois- Comtois, K.
(2004)
Preschool to school-age trajectories of 242 children, including 37 with insecure-disorganized and 66 with insecure-organized attachment patterns, were examined. Child attachment and stressful life events (the latter retrospectively) were measured at ages 5-7, and mother-child interactive quality, parenting stress, marital satisfaction, and teacher-reported behavior problems were evaluated concurrently and 2 years earlier. Results indicated that all three disorganized subgroups had poorer mother-child interactive patterns and more difficult family climates than secure or insecure-organized children. The controlling-punitive group showed significant increases in maternal reports of child-related stress between preschool and school age. The controlling-caregiving group showed greater likelihood of loss of a close family member, and mothers of the insecure-other group reported lower marital satisfaction and greater likelihood of their own or a spouse's hospitalization. Controlling-punitive children had higher externalizing scores, and controlling-caregiving children higher internalizing scores, than secure children.
Attachment at Early School Age and Developmental Risk: Examining Family Contexts and Behavior Problems of Controlling-Caregiving, Controlling-Punitive, and Behaviorally Disorganized Children. (PDF Download Available). Available from: https://www.researchgate.net/publication/8471077_Attachment_at_Early_School_Age_and_Developmental_Risk_Examining_Family_Contexts_and_Behavior_Problems_of_Controlling-Caregiving_Controlling-Punitive_and_Behaviorally_Disorganized_Children [accessed Jan 3, 2016].
Attachment Behavior Q-Set: Revision 2.0.
WATERS, E.
(1986)
In 1985 the SRCD Monographs series broke with tradition to publish a collection of papers exploring the new growth and directions of attachment theory and research. In the ensuing decade, many of the questions that were posed in that collection-such as, for instance, those concerning cognitive representations of attachment-as well as the methods and analytic approaches used by some of the authors to address these questions (e. g., Q-techniques) are no longer novelties but rather stand as paradigmatic examples of mainstream attachment research. In the present collection, several of the issues raised in the 1985 Monograph are revisited; these include the meaning and implications of attachment in cultures other than the United States and Western Europe (Posada, Gao, et al.), the nature of relations between attachment and temperament constructs (Seifer & Schiller), the links between quality of attachment and the mother's concurrent sensitivity (Pederson & Moran), and the association seen in children between attachment and mood (Lay, Waters, Posada, & Ridgeway). New approaches to traditional questions are explored by examining the relations among a child's different attachment relationships (Sagi et al.) and by constructing strategies for classification of infant-mother attachments on the basis of observations made in the home (Strayer, Verissimo, Vaughn, & Howes); the study of the relation between infant secure-base behavior and maternal support is extended to the investigation of macaque pairs (Kondo-Ikemura & Waters). New questions about links between attachment and other intimate relationships are considered; these include the relation between adults' attachment history and both the quality of their relationship with an intimate partner (Owens et al.) and the organization of secure-base behavior that their child shows in the home (Posada, Waters, Crowell, & Lay). Focusing on recent advances in research on cognitive development, consideration is also given to methodological issues relating to the assessment of young children's mental representations of relationships (Oppenheim & Waters). In all, the aim of the Monograph is both to consolidate our understanding of the empirical advances that have occurred in this domain of research over the last decade and to stimulate investigators to move beyond current understandings as well as current empiricism.
"Out of control" : Violence against personal support workers in long-term care.
Banerjee, A., Daly, T., Armstrong, H., Lafrance, S., & Szebehely, M.
(2008)
"Parent Management Training as a Treatment for Children with Oppositional Defiant Disorder Referred to a Mental Health Clinic."
Costin J
(2007)
Parent Management Training (PMT) has been shown to be an empirically supported intervention in ameliorating antisocial behaviour problems. Less evidence is available to demonstrate the effectiveness of PMT in routine public-health-oriented community-based settings where the presence of comorbid disorders complicates the picture. The current study was undertaken to investigate the effectiveness of PMT as a treatment for primary school-age children with Oppositional Defiant Disorder (ODD) and comorbid disorders offered by clinical staff as part of clinical practice. An Australian sample of 94 parents of children diagnosed with ODD by structured interview was provided with eight sessions of PMT. Measures used to assess changes in child behaviour symptoms were the Eyberg Child Behavior Inventory, the Parent Stress Index Child Domain, and the Child Behavior Checklist. Clinically relevant and statistically significant outcome results were found at posttreatment and at 5 months follow-up. There was a reduction in child symptomatology but no evidence of any effect of comorbidity on outcome. These findings are important for the clinical field as they show that PMT is a robust intervention suitable for routine clinical practice even when comorbid disorders are present in addition to ODD.
"The hidden client"--women caring for husbands with COPD: Their experience of quality of life.
Bergs, D.
(2002)
"Vad ska jag göra med min mamma"?
Holmberg, S.
(2008)
"We not them and us?” Views on the relationships and interactions between staff and relatives of older people permanently living in nursing homes
Hertzberg, A. and S. Ekman
(2000)
"You don't want to burden them": older adults' views on family involvement in care
Cahill, E., Lewis, L. M., Barg, F. K., & Bogner, H. R.
(2009)
Burden emerged as an important concept among older adults in a study of how older adults interact with their families around care. The authors conducted 50 semistructured interviews with adults older than the age of 65 years and a spouse or adult child. The sample was stratified by ethnicity thus giving the opportunity to explore both ethnic similarities and differences. Older adults who expressed the concept of burden were more likely to be White compared with older adults who did not express burden. Older respondents discussed burden in relation to not wanting to complicate the busy lives of adult children, guilt about health problems, and concern that children were overly worried about the care of their older family member. The expression and meaning of burden differed according to ethnicity. This study has implications for practice and policies to meet the needs of families and promote the independence of older persons.
‘Norms and ideals about elder care in a European comparative perspective’.
Daatland SO, Herlofsen K.
(2003)
“Generalised anxiety disorder in elderly patients: epidemiology, diagnosis and treatment options”
Flint, A. J.
(2005)
Generalised anxiety disorder (GAD) is characterised by at least 6 months of excessive uncontrollable worry accompanied by symptoms of motor tension and vigilance and scanning. As with other anxiety disorders, GAD is less prevalent in older adults than younger adults. GAD has a high level of comorbidity with other psychiatric disorders and this has a bearing on estimates of its prevalence. GAD that is comorbid with another psychiatric disorder has a period prevalence of approximately 4% in community-dwelling older people. On the other hand, 'pure' GAD is less common, with a period prevalence of approximately 1%. Pure GAD in late life is a fairly even mix of chronic cases that began earlier in life and cases starting for the first time in later life. The most frequent and consistent finding regarding late-life generalised anxiety is its high level of comorbidity with major depression. There are few longitudinal data pertaining to the temporal association of generalised anxiety and major depression in late life, but the data that do exist suggest that the anxiety is frequently symptomatic of the depression. If generalised anxiety occurs exclusively during episodes of major depression, a separate diagnosis of GAD is not warranted. Cognitive behaviour therapy (CBT) is the most frequently studied psychological treatment for GAD. Although CBT is more effective than a wait-list control condition, it is not more effective than nondirective therapies in late-life GAD. Furthermore, a standard course of CBT appears to be less efficacious for GAD in older adults than younger adults. Further research is needed to develop more efficacious and specific forms of psychotherapy for late-life GAD. The three classes of medications that are most commonly used for GAD are: (i) antidepressants; (ii) benzodiazepines; and (iii) buspirone. Antidepressant medication is the pharmacological treatment of choice for most older adults with generalised anxiety. When generalised anxiety is secondary to an episode of major depression, the selection of an antidepressant is guided by the same principles that apply to treatment of nonanxious depression. Antidepressant medication is also effective for GAD in the absence of an episode of major depression. In this situation, citalopram and venlafaxine have been found to be efficacious in older people. Data from studies of mixed-aged patients suggest that escitalopram, paroxetine and trazodone may also be beneficial in late-life GAD. Despite their widespread use in older persons with anxiety, benzodiazepines have a limited role in the treatment of GAD in the elderly. If a benzodiazepine is initiated, pharmacokinetic considerations favour the use of either lorazepam or oxazepam. Buspirone also has a more limited role than antidepressants in the treatment of late-life GAD.
“It makes me feel like good inside because I helped him do stuff” – Perceptions of psychological well-being in adolescents providing dementia care
Perion, Jennifer Steiner, Victoria Ames, April
(2021)
According to a 2018 report by the Alzheimer's Association, an estimated 250,000 children help support a family member with dementia, but few studies exist that describe their experience as family carers. This qualitative descriptive study sought to understand the perceived psychological well-being of adolescents who assist with providing care to family members with dementia. Eleven adolescents ages 12 to 17 caring for older non-parental family members with dementia in northwest Ohio participated in one of three focus group discussions. An adult family member was surveyed about family background and level of assistance provided. The data from the two questionnaires were analyzed using descriptive statistics. Focus group transcripts were analyzed using thematic content analysis. Thematic analysis revealed six themes related to psychological well-being: 1) Feeling compassion for the family member; 2) Finding connection through fun, humor, and mutual affection; 3) Helping even though it is not always pleasant; 4) Feeling good inside about helping family "do stuff"; 5) Believing no one can do it like family; and 6) Reflecting that it is just something that they do. The findings of this study provide new insight into adolescents' experiences of dementia family care and how it affects their psychological well-being. An examination of the themes suggests that secondary caring roles were mostly positive in nature and may help adolescents forge closer family relationships, find opportunities for personal growth and development, and overcome challenges to grow more confident. These findings may also suggest ways to include adolescents in family care as a means of positive growth opportunities. •Dementia caregiving was mostly a positive experience for adolescents.•Family obligations elicited feelings of connectedness.•Adolescents found ways to overcome feelings of aversion when providing care.•Emergent themes were consistent with Ryff's dimensions of physiological well-bring.•Results may be used to develop supportive and enriching programs for families.
“Role of depressive symptoms and comorbid chronic disease on health-related quality of life among community-dwelling older adults”.
Gallegos-Carrillo, K., Garcia-Pena, C., Mudgal, J., Romero, X., Durán-Arenas, L., & Salmeròn, J.
(2009)
OBJECTIVE:
This study examined the influence of depressive symptoms on health-related quality of life (HRQOL) among community-dwelling older adults suffering from various categories of chronic comorbidity.
METHODS:
A population-based survey in adults aged 60 years or more was conducted within a random sample of 1085 beneficiaries of the Mexican Institute of Social Security in Mexico City. Depressive symptoms were evaluated with the 15-item Geriatric Depression Scale, and chronic comorbidity was determined with self-reports concerning prior medical diagnoses and the HRQOL Short Form-36 health survey. We carried out a stratified analysis by comorbidity category, evaluating the impact of depressive symptoms on HRQOL through an analysis of variance and modeling the independent association of depression symptoms with HRQOL using multiple linear regression analyses adjusted for comorbidity and other covariables.
RESULTS:
HRQOL scores were low in the presence of depressive symptoms, while their impact increased when chronic diseases were also present. The group with the poorest HRQOL was older adults suffering from both depressive symptoms and two or more chronic diseases (P<.05). The stratified analysis by comorbidity and multivariate analysis, adjusted for covariables, indicated that depressive symptoms and comorbidity had cumulative negative effects on HRQOL.
CONCLUSION:
The HRQOL of older adults deteriorated when depressive symptoms were present and decreased even further with the simultaneous occurrence of chronic illnesses. Identifying depression symptoms-either alone or along with chronic conditions-is crucial for implementation of measures aimed at improving elderly people's HRQOL.
“Speech After Long Silence”: The Use of Narrative Therapy in a Preventive Intervention for Children of Parents with Affective Disorder
Focht-Birkerts, L., & Beardslee, W.R.
(1996)
This article is an attempt to explain why the stories of those who suffer from affective disorder have gone unspoken, and to describe how the Preventive Intervention Project (PIP) helps to elaborate a narrative process within families. The PIP is a short-term, psychoeducational intervention focused on enhancing family understanding of affective disorder, and on building resiliency in children. Detailed descriptions of interventions with two families are used to demonstrate how the PIP works with parents and children: to move the narrative process from private to shared meaning. We discuss how cultural "canons" regarding affective illness reinforce a tendency to keep that experience private. We then show how the PIP provides an alternative, "schematic base" of understanding that facilitates a family's ability to begin a dialogue about their illness. We hope to demonstrate how this modernist, psychoeducational framework can be integrated with a more open-ended, postmodern construction of meaning.
”Alla behöver ju bra habilitering …” småbarnsföräldrars uppfattningar av stöd från habiliteringen
Carlhed, Carina
(1998)
Denna studie ingår som en del i ett större forskningsprojekt som bedrivs vid institutionen för Samhälls- och Beteendevetenskap vid Mälardalens högskola. Projektet syftar till att öka kunskapen om familjers samarbete med habiliteringsverksamhet. Projektledare är docent Eva Björck-Åkesson. I denna studie har fokus riktats mot föräldrar till barn med funktionshinder. Syftet har varit att belysa uppfattningarna ur deras eget perspektiv, men ambitionen har också omfattat ett vidare perspektiv, att beskriva föräld-rarnas önskemål om hur de vill bli bemötta och hur de vill att stödet ska utformas. Syftet kan kortfattat beskrivas i följande fråga: Hur uppfattar föräldrar som har små barn med funktionshinder det stöd de får från habiliteringen och hur vill de att stödet ska utformas i framtiden?Studien har en explorativ, hermeneutisk ansats och har sin utgångspunkt i ett föräldraperspektiv. De teoretiska utgångspunkterna är utifrån ett utvecklingsekologiskt synsätt och i empowermentteori. Resultaten har speglats mot tidigare studier inom området avseende familje-/närmiljöorienterat arbetssätt inom habilitering/intervention och inom området "Early Intervention". Vid genomförandet av studien prövades också möjligheten att kombinera en hermeneutisk ansats med fenomenografisk metod. Denna kombination har visat sig ge en användbar praktisk vägledning i tolknings- och analysarbetet.Studiens resultat visar att det finns en skillnad i hur föräldrarna uppfattar det stöd de får i dag och hur de önskar att stödet skulle ges. Uppfattningar av stöd från habiliteringen beskrivs i kategorier som omfattar organisatoriska faktorer, habiliteringsteamets arbetssätt och möten med enskilda professionella. Resultatet redovisas bl.a. i en tabell som beskriver en önskad och uppfattad situation, även föräldrarnas uppfattningar avseende andra formella/informella system beskrivs. Resultaten visar att intentionerna i bl.a. LSS (Lagen om särskilt stöd och service, SFS 1993:387) inte implementerats, brister i information och samordning av insatser tycks vara två av de bidragande orsakerna. Det finns således en skillnad i lagtext och verklighet. Rättigheter skall följas åt av resurser, vilket inte är fallet för de medverkande föräldrarna. Arbetssättet hos habiliteringen är inte familje/närmiljöorienterat och följaktligen riktas insatser mot barnet i första hand. Insatserna har inte baserats på behov i familjernas vardag i någon större utsträckning, utan föräldrarna har snarare blivit hänvisade till "det som finns", både när det gäller tillgänglig specialistkompetens och ett fast utbud av aktiviteter. Någon större grad av "em-powerment" har inte dessa föräldrar fått vara med om och de ser sig inte själva som samarbetspartners i habiliteringsprocessen.I mötet ställs speciella krav enligt föräldrarna, man behöver t.ex. tätare kontakter och en mer aktiv hjälp och önskar mötas av en större lyhördhet och flexibilitet. Brister i kommunikation hos både föräldrar och personal samt ett lågt visat intresse och initiativtagande hos personalen verkat ha varit ett hinder för detta. Resultaten pekar på ett behov av utbildning / fortbildning för både personal och föräldrar i gemensam problem-lösning. Det finns viktiga faktorer hos både personal och föräldrar som bidrar till ett gott samarbete, t.ex. en vilja att arbeta familjeorienterat, attityder, kommunikationsförmåga etc. Betydelsen av goda relationer, ett respektfullt bemötande och noggrann uppföljning är också viktigt för samarbetet. Habiliteringens mål bör vara klart formulerat och filosofin/värderingarna i verksamheten bör överensstämma med verkligheten. Det finns enligt dessa resultat en diskrepans mellan upplevt behov och tillgänglig service.Slutligen presenteras en modell som beskriver graden av empowerment som ett resultat av en ömsesidig påverkansprocess i mötet mellan föräldrar och habiliteringspersonal
”Are there any clinical characteristics of depression in elderly people that could be useful for case finding in general practice?”
Fröjdh, K., Håkansson, A., & Jansson, S.
(2003)
OBJECTIVES:
The aim of this study was to identify clinical characteristics of depression in elderly people that could be useful for case finding in general practice.
DESIGN:
A cross-sectional study of clinical characteristics through review of medical records.
SETTING:
Herrhagen health centre, Karlstad, Sweden.
SUBJECTS:
Seventy-one persons with a high depressive score in a screening of depressive symptoms and an age-matched and sex-matched control group of 138 persons with a low depressive score.
RESULTS:
The high depressive score group had an increased relative risk for "mental health problems" (RR 3.4; CI 95% 1.7-7.2), "many contacts with the health care centre" (> or = 14/3 years) (RR 2.9; CI 95% 1.4-6.1), and prescriptions of benzodiazepines (RR 1.7; CI 95% 1.0-2.9). Two-thirds of those in the high depressive score group had at least one of these characteristics. However, three-quarters of those with any of these characteristics had a low depressive score. In our population of elderly people with an estimated prevalence of 10.2% the positive predictive value would be 21% and the negative predictive value 95%.
CONCLUSION:
General practitioners should suspect a possible depressive disorder in elderly patients with mental health problems, with frequent contacts with the health centre or with prescriptions of benzodiazepines. Despite the high occurrences of these prominent clinical characteristics in the high-score group, they did not unfortunately have sufficient discriminatory power to be useful for case finding.
”Att hon säger att hjälp inte behövs, betyder inte att hjälp inte behövs”. Behov och resurser för yngre personer med demenssjukdom.
Sonde, Lars.
(2014)
Stiftelsen Stockholms läns Äldrecentrum har undersökt situationen för yngre personer med demenssjukdom (yngre än 65 år) och deras anhöriga. Fokus har lagts på att beskriva de specifika problem och behov som finns och en kartläggning har gjorts av vilka befintliga resurser som erbjuds för att möta upp behoven.
”Because we know our limits”: Elderly parents´ view on intergenerational proximity and intimacy
Hjälm, A.
(2012)
From an intergenerational family perspective, geographical distance and proximity have been shown to affect interaction and the extent of help and support between generations. Geographical separation and nearness hence do not only influence the family per se, but might also concern the welfare state, not least in times of population ageing. This study concerns exchange and assistance between elderly parents living very close to an adult child, and is based on interviews with 14 elderly parents. The interviews revealed that help and support flowed in both directions between the close-living generations, but that from the perspective of the elderly some types of help were more acceptable than others to give and receive. Further, the interviews suggested that living close, albeit discussed as allowing extensive interaction and support, should not be understood as a sign of wanting or even accepting more extensive help from the close-living adult child.
”Man blir så glad när det går framåt.” Om familjens situation och behov när barnet har ett funktionshinder och om samhällets insatser ur föräldrarnas perspektiv
Larsson, Lena
(2007)
”No, you don’t know how we feel”: Groupwork with children facing parental loss
Chowns, G.
(2008)
Groupwork with bereaved children has become increasingly common. However, working with children anticipating potential bereavement has received much less attention. Similarly, research within this area in palliative care has been notable for two things - its paucity and its failure to address the perspective of the children themselves. The author, a palliative care social worker, turned to the action research paradigm for an approach that would more effectively engage with and illuminate these children's experiences, and undertook a collaborative inquiry - where the research is conducted with rather than for, on, or about the participants - with nine children aged from seven to fifteen. Collaborative inquiry raises - and challenges - many key issues in both research and groupwork, such as voice, power and identity, ethics and competence. This article addresses a number of these issues, with a particular focus on identity.
”Over the rainbow” a prevention group for bereaved children and families in a rural area
Miller, J.S.
(2010)
Akademisk Avhandling
The death of a loved one is a difficult experience for a child. However, prior research has found several characteristics that put some children at a greater risk than others. This study examined the unique needs that rural communities face trying to provide services to bereaved children and their families. The primary purpose of this study was to evaluate the effectiveness of a one-day bereavement camp for children and families in a rural area who have lost someone close to them. Participants completed quantitative and qualitative measures designed to evaluate the group. The camp was offered on four occasions, but despite intensive recruitment only seven participants attended. Although the group was well-liked and beneficial to those who attended, the recruitment and attendance difficulties suggest this may be an inefficient use of time and money for the provision of bereavement services to the community. A follow-up study was created to investigate the barriers and possible solutions to aid future programs. Fourteen key informants in the community were interviewed to address this topic and grounded theory was utilized to examine the results. Findings were consistent with the difficulties for other rural mental health programming in regards to accessibility and acceptability. Rural core providers must be aware of these unique variables in rural culture that lead to barriers to treatment and determine which strategies fit best to meet the needs of individuals in these communities.
”Patientens rätt till fast vårdkontakt”. Meddelandeblad Nr 9 2012
Socialstyrelsen
(2012)
”Patientens rätt till fast vårdkontakt”. Meddelandeblad Nr 9 2012.
Socialstyrelsen
(2012)
”Småbarnstiden tar ju aldrig slut.” Hur parrelationen påverkas av att vara förälder till ett barn med funktionsnedsättning inom autismspektrat
Högberg, Anette
(2009)
Denna rapport redovisar en undersökning av hur män och kvinnor upplever att parrelationen har påverkats av att de fått ett barn med funktionsnedsättning inom autismspektrum. Studien tar fasta på vad detta kan innebära för familjen i stort, för parrelationen och för självbilden. Rollfördelning och beroende behandlas liksom relationer till släkt, vänner och nätverk. Även hur kompetens och stolthet kan växa fram. Området är outforskat, undersökningen har därför fått en explorativ inriktning. Metoden är halvstrukturerade intervjuer.
”So that´s how I found out I was a young carer and that I actually had been a carer most of my life”: Identifying and supporting hidden young carers
Smyth C, Blaxland M, Cass B.
(2011)
A common theme in the literature on care-giving is the issue of 'hidden' carers, that is, people who undertake caring roles and responsibilities, yet do not identify themselves as carers. One reason people do not recognise themselves as carers relates to the nature of the caring relationship. When providing care for a family member, intra-familial bonds of love and reciprocity do not encourage parties to view the relationship as anything other than a 'normal' familial relationship. The lack of self-identification amongst young carers is complicated further by societal norms surrounding care-giving. Whereas adults are expected to provide care to other adults and children, young people are not expected to be care-givers but rather care recipients. As a result, many young carers remain 'hidden' and beyond the reach of services and supports designed to help them in their caring role. This paper draws on qualitative research with young carers and service providers to explore the issue of self-identification amongst young carers. The paper concludes with recommendations for identifying and supporting hidden young carers.
24-timmarscenter - stöd till anhöriga som vårdar demenshandikappade i hemmet
Nyström, C.
(2001)
Rapporter från Anhörig 300-konferenser våren 2001,Anhörig 300
5.98 Million
Ghafour, H.
(2012)
A brief measure of social support: practical and theoretical implications
Sarason IG, Sarason BR, Shearin N, Pierce GR.
(1987)
Two studies leading to the development of a short form of the Social Support Questionnaire (SSQ) are reported. In Study 1 three items selected for high correlations with the total score (SSQ3) were administered to 182 university students together with several personality measures. SSQ3 had acceptable test-retest reliability and correlations with personality variables similar to those of the SSQ. Internal reliability was marginal although acceptable for an instrument with so few items. Study 2 employed three sets of data in developing a six-item instrument (SSQ6). The SSQ6 had high internal reliability and correlated highly with the SSQ and similarly to it with personality variables. The research findings accompanying the development of the short form social support measure suggest that perceived social support in adults may be a reflection of early attachment experience.
A case for inclusion of prolonged grief disorder in DSM-V.
Prigerson, H.G., Vanderwerker, L.C. & Maciejewski, P.K.
(2008)
A clinical trial of an individualised intervention programme for family caregivers of older stroke victims in Taiwan
Shyu YI, Kuo LM, Chen MC, Chen ST.
(2010)
Aim and objective. To explore the long-term effects of a discharge-preparation programme targeting Taiwanese family caregivers of older patients with stroke.
Background. Little is known about the effects of interventions for caregivers of patients with stroke in Asian and Chinese families.
Design. A randomised experimental design was used.
Method. Participants included 158 older patients with stroke (72 in the experimental group and 86 in the control group) and their family caregivers. A caregiver-oriented intervention programme was designed to increase caregiver preparedness, to enhance caregiver perception of balance between competing needs and to satisfy specific needs during the transition between hospitalisation and discharge. Long-term outcomes were measured by caregiver's health-related quality of life, quality of care, stroke patient's self-care ability, patient's health-related quality of life and service utilisation. Longitudinal data were analysed by the generalised estimating equation approach.
Results. During the 12 months following discharge of older patients with stroke, caregivers in the experimental group provided significantly better quality of care (β = 0·45; p = 0·03) than the control group. Between the sixth–twelfth months following discharge, patients in the control group were more likely to be institutionalised than those in the experimental group (χ2 = 5·11; p = 0·03).
Conclusion. Using a sample from Taiwan, this intervention programme succeeded in improving quality of care provided by family caregivers to older patients with stroke and in decreasing the likelihood of their institutionalisation.
Relevance to clinical practice. Older Chinese patients with stroke and their family caregivers can benefit from an individualised programme that prepares caregivers for patient discharge. Similar programmes may be applicable to other countries with Chinese populations.
A cluster analysis of patients with schizophrenia in community care
Lora A, Cosentino U, Rossini MS, Lanzara D.
(2001)
In 203 patients (aged 15–64 yrs) with schizophrenia, the authors identified different clusters of Ss on the basis of the severity of psychopathology, disability, and family burden. Patient measures included the Disability Assessment Schedule and the Brief Psychiatric Rating Scale. Family burden, including relatives' satisfaction with services provided, was evaluated with the Questionnaire for Family Problems. In the 1st cluster, patients' severity of illness was mild and their use of services low. In the 2nd, patients' disability was more severe; psychiatric symptoms were low in severity, family burden was moderate, and use of community services was more intensive. In the 3rd cluster, patients had serious disability and severe positive symptoms; their families suffered distressing burdens, and their use of hospital and community services was intensive. In the 4th cluster, patients' disability was very severe, negative symptoms were prominent, and relatives' burden was moderate; use of hospital services was frequent, and use of community services was less so. Findings suggest that improving responsiveness to the needs of the most seriously ill patients and their families is a central issue that requires further study and practical implementation. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
A cluster randomised controlled trial and economic evaluation of a structured training programme for caregivers of inpatients after stroke: the TRACS trial
Forster A, Dickerson J, Young J, Patel A, Kalra L, Nixon J, et al.
(2013)
BACKGROUND:
The majority of stroke patients are discharged home dependent on informal caregivers, usually family members, to provide assistance with activities of daily living (ADL), including bathing, dressing and toileting. Many caregivers feel unprepared for this role and this may have a detrimental effect on both the patient and caregiver.
OBJECTIVE:
To evaluate whether or not a structured, competency-based training programme for caregivers [the London Stroke Carer Training Course (LSCTC)] improved physical and psychological outcomes for patients and their caregivers after disabling stroke, and to determine if such a training programme is cost-effective.
DESIGN:
A pragmatic, multicentre, cluster randomised controlled trial.
SETTING:
Stratified randomisation of 36 stroke rehabilitation units (SRUs) to the intervention or control group by geographical region and quality of care.
PARTICIPANTS:
A total of 930 stroke patient and caregiver dyads were recruited. Patients were eligible if they had a confirmed diagnosis of stroke, were medically stable, were likely to return home with residual disability at the time of discharge and had a caregiver available, willing and able to provide support after discharge. The caregiver was defined as the main person--other than health, social or voluntary care provider--helping with ADL and/or advocating on behalf of the patient.
INTERVENTION:
The intervention (the LSCTC) comprised a number of caregiver training sessions and competency assessment delivered by SRU staff while the patient was in the SRU and one recommended follow-up session after discharge. The control group continued to provide usual care according to national guidelines. Recruitment was completed by independent researchers and participants were unaware of the SRUs' allocation.
MAIN OUTCOME MEASURES:
The primary outcomes were self-reported extended ADL for the patient and caregiver burden measured at 6 months after recruitment. Secondary outcomes included quality of life, mood and cost-effectiveness, with final follow-up at 12 months.
RESULTS:
No differences in primary outcomes were found between the groups at 6 months. Adjusted mean differences were -0.2 points [95% confidence interval (CI) -3.0 to 2.5 points; p = 0.866; intracluster correlation coefficient (ICC) = 0.027] for the patient Nottingham Extended Activities of Daily Living score and 0.5 points (95% CI -1.7 to 2.7 points; p = 0.660; ICC = 0.013) for the Caregiver Burden Scale. Furthermore, no differences were detected in any of the secondary outcomes. Intervention compliance varied across the units. Half of the participating centres had a compliance rating of > 60%. Analysis showed no evidence of higher levels of patient independence or lower levels of caregiver burden in the SRUs with better levels of intervention compliance. The economic evaluation suggests that from a patient and caregiver perspective, health and social care costs, societal costs and outcomes are similar for the intervention and control groups at 6 months, 12 months and over 1 year.
CONCLUSIONS:
We have conducted a robust multicentre, cluster randomised trial, demonstrating for the first time that this methodology is feasible in stroke rehabilitation research. There was no difference between the LSCTC and usual care with respect to improving stroke patients' recovery, reducing caregivers' burden, or improving other physical and psychological outcomes, nor was it cost-effective compared with usual care. Compliance with the intervention varied, but analysis indicated that a dose effect was unlikely. It is possible that the immediate post-stroke period may not be the ideal time for the delivery of structured training. The intervention approach might be more relevant if delivered after discharge by community-based teams.
TRIAL REGISTRATION:
Current Controlled Trials ISRCTN49208824.
FUNDING:
This project was funded by the MRC and is managed by the NIHR (project number 09/800/10) on behalf of the MRC-NIHR partnership, and will be published in full in Health Technology Assessment; Vol. 17, No. 46. See the NIHR Journals Library website for further project information.
A comparative study of nursing staff, care recipients´ and their relatives´ perceptions of quality of older people care
Hasson, H., & Arnetz, J. E.
(2010)
Background. Comparisons of different stakeholders' ratings of the quality of older people care can help to drive quality improvement.
Aim. The aim was to compare staff, older care recipients' and their relatives' quality of care ratings.
Design. Cross-sectional questionnaire surveys in 2003 and 2004, using a repeated measures design on an organizational level.
Methods. Nursing staff, care recipients and relatives in two older people care organizations were included. The ratings of an overall quality grade, information, activities, general care and staff skills were compared between the respondent groups.
Results. Care recipients in both organizations rated the overall quality grade significantly higher than nursing staff and relatives. Staff ratings of the information given to care recipients were significantly more positive than care recipients' and relatives' ratings. All three groups gave lowest ratings to the quality of activities offered to care recipients, with lowest ratings from nursing staff.
Conclusions. Concurrent measurements of staff, care recipients and relatives' care quality perceptions can provide a broad evaluation of an organization's strength and limitations.
Relevance to clinical practice. Staff, care recipients' and relatives' perceptions can be useful for older people care organizations and decision makers in developing care processes and outcomes of care.
A Comparison of the Lifetime Economic Prospects of Women Informal Carers and Non-carers, Australia, 2007
Nepal B, Brown L, Ranmuthugala G, Percival R. A
(2011)
Informal care provided at home to family members with a disability is a major part of the disability and aged care system in Australia. Using data from the 2007 Household Income and Labour Dynamics in Australia survey, this study provides an updated comparison of the financial wellbeing, or lack thereof, over the working life of women primary carers and non-carers. This study focuses on selected groups of primary carers and non-carers disaggregated by partnership status, level of education and self-assessed health status. While women primary carers tend to be more financially disadvantaged than non-carers, having a post-school education and being in good health contribute positively to bridge the gaps.
A conceptual framework for examining the promise of the NORC program and Village models to promote aging in place
Greenfield , E. A.,
(2012)
A growing paradigm shift emphasizes efforts to promote aging in place not only by helping aging individuals and families, but also by addressing and engaging communities. This paper explores the idea of developing community supports for aging in place by examining two models that incorporate this approach into practice: Naturally Occurring Retirement Community Supportive Service Programs (NORC programs) and Villages. Drawing on research regarding social–relational aspects of communities and later-life health and well-being, we present an integrative conceptual framework positing three categories of activities and services (civic engagement and empowerment activities; social relationship building activities; services to enhance access to resources)–as well as the initial outcomes and intermediate outcomes–through which the NORC program and Village models potentially achieve their long-term goal of promoting aging in place. Based on this framework, we conclude with directions for future research on community initiatives that support aging in place.
A conceptual framework of outcomes for caregivers of assistive technology users
Demers, L., Fuhrer, M. J., Jutai, J., Lenker, J., Depa, M., & De Ruyter, F.
(2009)
Abstract
OBJECTIVE: To develop and validate the content of a conceptual framework concerning outcomes for caregivers whose recipients are assistive technology users.
DESIGN: The study was designed in four stages. First, a list of potential key variables relevant to the caregivers of assistive technology users was generated from a review of the existing literature and semistructured interviews with caregivers. Second, the variables were analyzed, regrouped, and partitioned, using a conceptual mapping approach. Third, the key areas were anchored in a general stress model of caregiving. Finally, the judgments of rehabilitation experts were used to evaluate the conceptual framework.
RESULTS: An important result of this study is the identification of a complex set of variables that need to be considered when examining the experience of caregivers of assistive technology users. Stressors, such as types of assistance, number of tasks, and physical effort, are predominant contributors to caregiver outcomes along with caregivers' personal resources acting as mediating factors (intervening variables) and assistive technology acting as a key moderating factor (effect modifier variable).
CONCLUSIONS: Recipients' use of assistive technology can enhance caregivers' well being because of its potential for alleviating a number of stressors associated with caregiving. Viewed as a whole, this work demonstrates that the assistive technology experience of caregivers has many facets that merit the attention of outcomes researchers.
A constructionist discourse on resilience
Ungar, M.
(2004)
An ecological approach to the study of resilience, informed by Systems Theory and emphasizing predictable relationships between risk and protective factors, circular causality, and transactional processes, is inadequate to account for the diversity of people's experiences of resilience. In contrast, a constructionist interpretation of resilience reflects a postmodern understanding of the construct that better accounts for cultural and contextual differences in how resilience is expressed by individuals, families, and communities. Research supporting this approach has demonstrated a nonsystemic, nonhierarchical relationship between risk and protective factors that is characteristically chaotic, complex, relative, and contextual. This article critically reviews research findings that support an ecological perspective and explores the emerging literature that informs a constructionist approach to the study of resilience. It will show that an alternate constructionist discourse on resilience greatly enhances our understanding of resilience-related phenomena and our approach to interventions with at-risk youth populations.
A contextually based theory of caregiver suffering
Georges, J. M.
(2010)
A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse
Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al.
(2014)
Objective: Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design. Method: Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization. Results: As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers. Conclusion: Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
A controlled evaluation of family behavior therapy in concurrent child neglect and drug abuse
Donohue B, Azrin NH, Bradshaw K, Van Haslet VB, Cross CL, Urgelles J, et al.
(2014)
OBJECTIVE:
Approximately 50% of child protective service (CPS) referrals abuse drugs; yet, existing treatment studies in this population have been limited to case examinations. Therefore, a family-based behavioral therapy was evaluated in mothers referred from CPS for child neglect and drug abuse utilizing a controlled experimental design.
METHOD:
Seventy-two mothers evidencing drug abuse or dependence and child neglect were randomly assigned to family behavior therapy (FBT) or treatment as usual (TAU). Participants were assessed at baseline, 6 months, and 10 months postrandomization.
RESULTS:
As hypothesized, intent-to-treat repeated measures analyses revealed mothers referred for child neglect not due to their children being exposed to illicit drugs demonstrated better outcomes in child maltreatment potential from baseline to 6- and 10-month postrandomization assessments when assigned to FBT, as compared with TAU mothers and FBT mothers who were referred due to child drug exposure. Similar results occurred for hard drug use from baseline to 6 and 10 months postrandomization. However, TAU mothers referred due to child drug exposure were also found to decrease their hard drug use more than TAU mothers of non-drug-exposed children and FBT mothers of drug-exposed children at 6 and 10 months postrandomization. Although effect sizes for mothers assigned to FBT were slightly larger for marijuana use than TAU (medium vs. large), these differences were not statistically significant. Specific to secondary outcomes, mothers in FBT, relative to TAU, increased time employed from baseline to 6 and 10 months postrandomization. Mothers in FBT, compared to TAU, also decreased HIV risk from baseline to 6 months postrandomization. There were no differences in outcome between FBT and TAU for number of days children were in CPS custody and alcohol intoxication, although FBT mothers demonstrated marginal decreases (p = .058) in incarceration from baseline to 6 months postrandomization relative to TAU mothers.
CONCLUSION:
Family-based behavioral treatment programs offer promise in mothers who have been reported to CPS for concurrent substance abuse and child neglect of their children. However, continued intervention development in this population is very much needed.
A cross general comparison of alcohol challenges at about age 20 in 40 father-offspring pairs
Schuckit, MA., Smith, TL., Kalmijn, J., & Danko, GP.
(2005)
Abstract: Background: A low level of response (LR) to alcohol is one of several genetically-influenced phenotypes associated with an elevated risk for heavy drinking and alcoholism. While most studies support the influence of genes for this characteristic, no data to date have addressed how LR established from alcohol challenges performs in similarly aged subjects across generations
Methods: Between 1978 and 1988, 18-to-25-year-old non-alcohol-dependent Caucasian male drinkers participated in the San Diego Prospective Study alcohol challenges. The paradigms included self-reports of feelings of "High" and "Intoxication," as well as alcohol-related changes in body sway. In recent years, 40 18-to-29-year-old offspring of 25 of these original probands were tested using a similar protocol
Results: Despite the passage of two decades between laboratory sessions across generations, for family history positive (FHP) subjects, significant positive correlations were observed for subjective feelings of intoxication and body sway after alcohol. Parent-offspring correlations were in the predicted direction for subjective feelings for family history negatives (FHNs), but were not significant. Across offspring, LR values were lower for FHPs overall, with significant differences at 60 or 90 min for five items
Conclusions: The similarities in LR across generations, while not proving heritability, are consistent with prior reports regarding genetic influences in the LR to alcohol. The significant correlations across generations and over two decades support the reliability of the alcohol challenge results.
A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation
Perrin, P. B., Johnston, A., Vogel, B., Heesacker, M., Vega-Trujillo, M., Anderson, J.,Rittman, M.
(2010)
Abstract
This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention
A culturally sensitive transition assistance program for stroke caregivers: examining caregiver mental health and stroke rehabilitation.
Perrin PB, Johnston A, Vogel B, Heesacker M, Vega-Trujillo M, Anderson J, et al
(2010)
This study developed and implemented the Transition Assistance Program (TAP) for stroke caregivers. The program is composed of (1) skill development, (2) education, and (3) supportive problem solving. Sixty-one dyads (n = 122) participated: thirty-nine from Puerto Rico and twenty-two from Texas. Participants were randomly assigned to the TAP treatment or a control group. As caregiver satisfaction with the TAP increased, strain and depression decreased, and caregivers reported a very high rate of program satisfaction (9.5 out of 10). The TAP effectively reduced caregiver strain at the 3-month follow-up. When controlling for baseline differences, we found that the treatment group had lower depression (p = 0.07) than the control group at follow-up and that the TAP may have had a preventative effect on depression for caregivers who had not been depressed at discharge, although this visual trend did not reach statistical significance. Among veterans with low functioning at baseline, veterans whose caregivers had received the TAP improved in functioning more than did veterans whose caregivers had been in the control group, although this visual trend was not significant. Functioning in veterans with stroke was also significantly linked to caregiver satisfaction with the TAP. The findings from the current study warrant further evaluation of the TAP intervention.
A desire to be seen: family caregivers' experiences of their caring role in palliative home care
Linderholm, M., & Friedrichsen, M.
(2010)
Abstract
Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members' situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patient's final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.
A different parenthood?
Starke, Mikaela
(2003)
A dispositional and situational assessment of children’s coping: Testing alternative models of coping
Ayers, T.S., Sandler, I.N., West, S.G. & Roosa, M.W.
(1996)
ABSTRACT Dispositional and situational measures of children's coping were developed using a theoretically based approach. Two studies (N1 = 217; N2 = 303) assessed the psychometric characteristics of these measures in fourth- through sixth-grade children. Confirmatory factor analyses indicated that a four-factor model of dispositional coping (active, distraction, avoidant, and support seeking) provided a better fit to the data than either the problemversus emotion-focused (Lazarus & Folkman, 1984) or passive versus active (Billings & Moos, 1981) coping models. The four-factor model was largely invariant with respect to age and gender. Moderate to high correlations were found between the parallel subscales of the dispositional and situational measures of coping. Although the four factor structures of the dispositional and situational measures were generally similar, factor loadings and correlations between dimensions were not equivalent.
A family perspective for substance abuse: implications from the literature
Gruber KJ, Taylor MF
(2006)
This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.
A family perspective for substance abuse: implications from the literature.
Gruber KJ, Taylor MF.
(2006)
This paper calls for researchers and treatment providers to increase their recognition of the role
that family and family functioning has for understanding the incidence and impact of substance
abuse. Substance abuse is identified as a family problem by exploring its occurrence within
families as well as its impact on marital relationship, family violence, and child abuse and
neglect. The impact of substance abuse on the roles of spouses and parents are examined, as is
the impact of substance abuse on children at various developmental stages. The role of the family
as participant in active substance abuse as well as a valuable treatment resource is also explored.
Finally, the authors present recommendations for increasing the focus on family in substance
abuse research.
Keywords: family | substance abuse | family functioning | parental alcohol use | parental drug
use | substance abuse research
A Feasibility Study of Enhanced Group Triple P — Positive Parenting Program for Parents of Children with Attention-deficit/Hyperactivity Disorder
Hoath, F. E., Hoath, F. E., Sanders, M. R., & Sanders, M. R.
(2002)
The aim of this randomised controlled trial was to examine the efficacy of an Attention-deficit/ hyperactivity Disorder (ADHD)-specific, Enhanced (Level 5) Group Triple P intervention. Twenty families with a child with clinically diagnosed ADHD aged between 5 and 9 years participated. Families were randomly assigned to either an enhanced intervention group (Enhanced Group Triple P; EGTP) or a wait list (WL) condition. Using parent reports of child behaviour, parenting practices and family functioning in addition to teacher reports of child behaviour in the school environment, parents in the EGTP condition reported significant reductions in intensity of disruptive child behaviour problems, aversive parenting practices and increases in parental self-efficacy when compared to the WL condition. Parents' reports at 3-month follow-up indicated the gains in child behaviour and parenting practices achieved at post-intervention were maintained.
A functional analysis of resistance during parent training therapy
Patterson, G., & Chamberlain, P.
(1994)
A decade of programmatic studies of resistance during parent training therapy is reviewed, including a brief description of a procedure developed for coding resistant behavior. Analyses of sequential interactions during treatment show that therapists' efforts to intervene produced immediate parental resistance. From baseline to midtreatment phases, there were increases in the therapists' efforts to intervene, which were in turn accompanied by Increases in parental resistance. Contextual variables such as parent pathology also correlated with higher levels of resistance. Decreases in resistance were associated with improvements in parental discipline practices. Parental resistance altered the behavior of the therapists, reducing their effectiveness. A regression analysis shows that improvements in discipline predicted fewer future arrests and out-of-home placement.
A future for family care and dementia intervention research? Challenges and strategies
Zarit SH, Femia EE.
(2008)
Despite widespread interest in the challenges facing family caregivers of people with dementia, the literature on empirically-validated treatments has grown slowly. One issue that has limited its growth has been that many of the existing treatment trials show weak or only modest benefits on caregiver outcomes. An examination of the literature suggests that the research strategies used for testing the effectiveness of interventions have not been optimal and the limitations in their approaches may have contributed to their limited findings of improvement. We identify some of the methodological issues that may have affected previous trials and suggest strategies for addressing these issues.
A graphic symbol tool for the evaluation of communication, satisfaction and priorities of individuals with intellectual disability who use a speech generating device
Valiquette, C., Sutton, A., & Ska, B.
(2010)
This article reports on the views of individuals with learning disability (LD) on their use of their speech generating devices (SGDs), their satisfaction about their communication, and their priorities. The development of an interview tool made of graphic symbols and entitled Communication, Satisfaction and Priorities of SGD Users (CSPU) is described in detail. The tool was used to support comprehension and to elicit the opinions of eight individuals with LD who had severe communication disorders. Most participants reported that they did not use their SGDs in situations in which they needed them in order to communicate effectively. The participants' parents corroborated these statements but they identified priorities that were different from their child's. The results emphasize the necessity of permitting individuals with severe communication disorders to take part in decision-making by indicating their satisfaction and priorities for intervention. Methodological issues and future use of the evaluation tool in research and in clinical settings are discussed.
A Hermeneutic Phenomenological Analysis of Ageing with a Childhood Onset Disability
Harrison, T. C. & Stuifbergen, A.
(2005)
In this qualitative study, we combined multiple interviews, field notes, life history review charts, and demographic questions to explore the life course experiences of 25 women, ages 55 to 65 years, who developed impairments due to paralytic polio during childhood. Based on a hermeneutic phenomenological methodology using thematic analysis, multiple themes emerged that traced their lives from childhood to later adulthood. The women described how they pushed their bodies and dismissed their physical decline as long as possible. The women's early experiences combined with the culturally defined role expectations for women to influence their perceptions of how to react to changing physical abilities with age.
A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives
Kuh, D., & Ben-Shlomo, Y.
(2002)
Over the last few years there has been increasing interest in conceptualizing disease aetiology within a life course framework.1,,2 This approach is not new to Public Health or unique to epidemiology (see below). However, its current resonance and interest within epidemiology reflects the challenging theoretical framework this approach provides. This issue of the International Journal of Epidemiology has several papers with a 'life course theme'. This accompanying editorial is intended to highlight what we believe are the key conceptual issues around life course epidemiology. We have chosen to use examples from chronic disease epidemiology, but this approach is also applicable within the context of infectious diseases3 and wider notions of health and wellbeing.4
We have defined a life course approach to chronic disease epidemiology1 as the study of long-term effects on chronic disease risk of physical and social exposures during gestation, childhood, adolescence, young adulthood and later adult life. It includes studies of the biological, behavioural and psychosocial pathways that operate across an individual's life course, as well as across generations, to influence the development of chronic diseases.
A locus of control scale for children
Nowicki S, Strickland BR.
(1973)
A study to produce a reliable, methodological precise
measure of generalized locus of control of reinforcement, which can
be group administered to a wide range of children, is reported. The
measure produced, the Nowicki-Strickland Locus of Control Scale, is a
paper and pencil instrument of 40 questions which are marked either
yes or no. The scale was administered to 1017 mostly Caucasian
elementary and high school students, grades 3 through 12, with all
socioeconomic levels except the very highest represented. All mean
intelligence scores were in the average range. Results of the test
administration include: (1) the student's responses became more
internal with age, and substantial individual dif ferences occurred at
the third-grade level; (2) all item-total relationships were moderate
but consistent for all ages; (3) locus of control scores were not
significantly related to social desirability; (4) it was tentaively
concluded that internality is related significantly to higher
occupational level, especially for males; and (5) there was a clear
relationship between locus of control and achievement scores; all
correlations were negative, with most of the significant correlations
present in the male group. Two revised scales of 20 items and 21
items for primary and secondary groups, respectively, were
constructed; the scale was also adopted for use with college and
adult subjects. Eight tables present the study data, and samples of
the 20 and 21 item scales are given. (DB)
A Long-Term Follow-up Study of a Randomized Controlled Trial of Mother-Infant Psychoanalytic Treatment: Outcomes on Mothers and Interactions
SALOMONSSON, M. W., SORJONEN, K. & SALOMONSSON, B.
(2015)
An earlier randomized controlled trial (RCT) compared 80 mother-infant dyads in a Stockholm sample. One had received mother-infant psychoanalytic treatment [mother-infant psychoanalytic therapies (MIP) group], and the other received Child Health Center care (CHCC group). Effects were found on mother-reported depression and expert-rated mother-infant relationship qualities and maternal sensitivity. When the children were 412 years, the dyads were followed up with assessments of the children's attachment representations, social and emotional development, and global functioning, and the mothers' psychological well-being and representations of the child as well as the mother-child interactions. We gathered data from 66 cases approximately 312 years' posttreatment. All scores involving the mothers had now approached community levels. We found effects on maternal depression in favor of MIP, but no other between-group differences. The MIP treatments seemed to have helped the mothers to recover more quickly on personal well-being, to become more sensitive to their babies' suffering, and to better support and appreciate their children throughout infancy and toddlerhood. If so, this would explain why the MIP children had a better global functioning and were more often "OK" and less often "Troubled" at 412 years.
A metaanalysis of behavioral treatments for attention-deficit/hyperactivity disorder
Fabiano, G. A., Pelham, W. E., Coles, E. K., Gnagy, E. M., Chronis-Tuscano, A., & O’Connor, B. C.
(2009)
There is currently controversy regarding the need for and the effectiveness of behavior modification for children with attention-deficit hyperactivity disorder (ADHD) despite years of study and multiple investigations reporting beneficial effects of the intervention. A meta-analysis was conducted by identifying relevant behavioral treatment studies in the literature. One-hundred seventy-four studies of behavioral treatment were identified from 114 individual papers that were appropriate for the meta-analysis. Effect sizes varied by study design but not generally by other study characteristics, such as the demographic variables of the participants in the studies. Overall unweighted effect sizes in between group studies (.83), pre-post studies (.70), within group studies (2.64), and single subject studies (3.78) indicated that behavioral treatments are highly effective. Based on these results, there is strong and consistent evidence that behavioral treatments are effective for treating ADHD.
A meta-analysis of interventions for bereaved children and adolescents
Rosner, R., Kruse, J., & Hagl, M.
(2010)
The main objective of this review was to provide a quantitative and methodologically sound evaluation of existing treatments for bereavement and grief reactions in children and adolescents. Two meta-analyses were conducted: 1 on controlled studies and 1 on uncontrolled studies. The 2 meta-analyses were based on a total of 27 treatment studies published before June 2006. Hedges's g and Cohen's d were used as measures of effect size and a random-effects model was applied. Results yielded small to moderate effect sizes. Interventions for symptomatic or impaired participants tended to show larger effect sizes than interventions for bereaved children and adolescents without symptoms. Promising treatment models were music therapy and trauma/grief-focused school based brief psychotherapy.
A meta-analytic review of components associated with parent training program effectiveness
Kaminski, J. W., Valle, L. A., Filene, J. H., & Boyle, C. L.
(2008)
This component analysis used meta-analytic techniques to synthesize the results of 77 published evaluations of parent training programs (i.e., programs that included the active acquisition of parenting skills) to enhance behavior and adjustment in children aged 0-7. Characteristics of program content and delivery method were used to predict effect sizes on measures of parenting behaviors and children's externalizing behavior. After controlling for differences attributable to research design, program components consistently associated with larger effects included increasing positive parent-child interactions and emotional communication skills, teaching parents to use time out and the importance of parenting consistency, and requiring parents to practice new skills with their children during parent training sessions. Program components consistently associated with smaller effects included teaching parents problem solving; teaching parents to promote children's cognitive, academic, or social skills; and providing other, additional services. The results have implications for selection and strengthening of existing parent training programs.
A mismatch of paradigms disrupts the introduction of psycho-educative interventions for families of persons with smi: An interview study with staff from community services
Persson, Karin; Östman, Margareta; Ingvarsdotter, Karin; Hjärthag, Fredrik
(2018)
Abstract:
Treatment and support of people diagnosed with severe mental illness in Sweden takes place in out-patient psychiatric services or municipality services. Most of the responsibility for support in daily life are provided by the close family. One crucial matter is how to support these families. This research project aimed to investigate the Swedish construction with shared responsibility between county psychiatric care and municipality social care for consumers with severe mental illness affects actions in municipalities in relation to family support. Ten representatives from five municipality settings were interviewed. Five semi-structured interviews were analysed using a thematic analysis. The following themes emerged; One overarching theme, "a mismatch of paradigms", and sub-themes: (a) "accentuating differences", (b) "doubts about including the entire family in the same session" and (c) "lack of a uniform family support policy". We conclude that a shared mandate needs a dialogue between psychiatric and municipality services concerning this mismatch.
A model Community Education Program on Depression and Suicide in Later Life.
Pratt, C. C., Schmall, V. L., Wilson, W., & Benthin, A.
(1991)
This paper describes the development and evaluation of a 3-hour multimedia community education program on depression and suicide in later life. Designed for families, older adults, and service providers, the program provides information and teaches skills needed to recognize and respond to depression and suicidal behavior in the elderly. Compared with a control group, program participants had significant gains in knowledge and in their intent to take appropriate action in support of a depressed person.
A Model for Parental ADHD: Help-Seeking and Readiness to Change
Waite, R., & Ramsay, J. R.
(2010)
Attention deficit/hyperactivity disorder (ADHD) is a lifespan developmental syndrome that is associated with significant impairments. Although there is strong evidence that ADHD persists into adulthood for a majority of individuals, adults with ADHD are identified and treated at much lower rates than are children with ADHD. Considering the heritability of ADHD, there is an increased likelihood that at least one parent of a child with ADHD will also have ADHD, or exhibit prominent features of the disorder. Parental ADHD also affects help-seeking behavior regarding treatment, as well as follow through on treatment recommendations. There is a paucity of data on parental ADHD and help-seeking among underserved populations. The goal of this paper is to review parental ADHD among underserved groups in terms of factors affecting help-seeking behavior and readiness to engage in care. A model for conceptualizing and addressing issues of readiness for change for parents with ADHD is also proposed.
A model of consequences of dementia caregivers' stress process: influence on behavioral symptoms of dementia and caregivers' behavior-related reactions
Campbell, J.
(2009)
Abstract
The purpose of this article is to extend the Schultz and Martire Caregiver Stress-Health Model by explaining consequences of the stress process beyond those related to health in dementia caregivers, including consequences for caregivers and the dyadic unit, and to highlight the dynamic that exists between caregivers' stress, behavioral symptoms of dementia, and behavior-related reactions of caregivers. The relevant literature is reviewed, establishing the pervasive effects of caregivers' stress within a care dyad. Primary informal caregivers play a predominant role in managing environmental stimuli and providing for needs, in particular adjusting their own approaches and demeanor to enhance the care environment. Thus, behavioral symptoms of dementia and the behavior-related reactions of caregivers are conceptualized as a dyadic consequence of the caregivers' stress process. This model presents an extended view of the consequences of caregivers' stress and provides a more holistic, dyadic approach to the issues these vulnerable dyads face. Behavioral symptoms of dementia and behavior-related reactions are seen as amenable to caregiver- or dyad-directed interventions that target stress reduction. This conceptualization may provide support for research, clinical, or policy initiatives that include caregiver-directed or dyadic interventions for these important behavior-related outcomes
A multidisciplinary group programme in rural settings for community-dwelling chronic stroke survivors and their carers: a pilot randomized controlled trial.
Marsden D, Quinn R, Pond N, Golledge R, Neilson C, White J, et al.
(2010)
OBJECTIVES:
To explore whether a group programme for community-dwelling chronic stroke survivors and their carers is feasible in rural settings; to measure the impact of the programme on health-related quality of life and functional performance; and to determine if any benefits gained are maintained.
DESIGN:
Randomized, assessor blind, cross-over, controlled trial.
SETTING:
Rural outpatient.
SUBJECTS:
Twenty-five community-dwelling, chronic stroke survivors and 17 carers of participant stroke survivors.
INTERVENTION:
The intervention group undertook a once-a-week, seven-week group programme combining physical activity, education, self-management principles and a 'healthy options' morning tea. At completion, the control group crossed over to receive the intervention.
MAIN MEASURES:
Stroke Impact Scale (stroke survivors), Health Impact Scale (carers), Six Minute Walk Test, Timed Up and Go, Caregiver Strain Index.
RESULTS:
There were insufficient participants for results to reach statistical significance. However between-group trends favoured the intervention group in the majority of outcome measures for stroke survivors and carers. The majority of measures remained above baseline at 12 weeks post programme for stroke survivor participants. The programme was well attended. Of the seven sessions all participants attended four or more and 88% attended six or seven sessions.
CONCLUSIONS:
This novel programme incorporating physical activity, education and social interaction proved feasible to undertake by a stroke-specific multidisciplinary team in three rural Australian settings. This programme may improve and maintain health-related quality of life and physical functioning for chronic stroke survivors and their carers and warrants further investigation.
A multilevel approach to family-centered prevention in schools: process and outcome
Dishion TJ, Kavanagh K.
(2000)
The Adolescent Transitions Program (ATP) is a multilevel approach to family-based interventions within a middle-school setting. The intervention strategy is based on an ecological framework for studying social and emotional development in children and adolescents, emphasizing a network of contextual factors within which parenting is both directly and indirectly influential on the development of problem behavior. The ATP model includes a universal, selected, and indicated strategy for serving families with young adolescents. The model is designed to address the needs of families of young adolescents that present with a range of problem behavior and diverse developmental histories. The three interventions levels are described, and outcome data are presented, that support the effectiveness of the ATP model. This approach and the associated data are consistent with a broad literature supporting the effectiveness of family interventions, especially for high-risk youth. The effective implementation of family interventions within a school context suggests that these interventions can make a significant contribution to reducing problem behavior and substance use from a public health perspective.
A multilevel approach to family-centered prevention in schools: process and outcome
Dishion TJ, Kavanagh K.
(2000)
The Adolescent Transitions Program (ATP) is a multilevel approach to family-based interventions within a middle-school setting. The intervention strategy is based on an ecological framework for studying social and emotional development in children and adolescents, emphasizing a network of contextual factors within which parenting is both directly and indirectly influential on the development of problem behavior. The ATP model includes a universal, selected, and indicated strategy for serving families with young adolescents. The model is designed to address the needs of families of young adolescents that present with a range of problem behavior and diverse developmental histories. The three interventions levels are described, and outcome data are presented, that support the effectiveness of the ATP model. This approach and the associated data are consistent with a broad literature supporting the effectiveness of family interventions, especially for high-risk youth. The effective implementation of family interventions within a school context suggests that these interventions can make a significant contribution to reducing problem behavior and substance use from a public health perspective.
A multiple-case study of a family-oriented intervention practice in the early rehabilitation phase of persons with aphasia
Blom Johansson M, Carlsson M, Östberg P, Sonnander K.
(2013)
Background: Having a family member with aphasia severely affects the everyday life of the significant others, resulting in their need for support and information. Family-oriented intervention programmes typically consist of support, information, and skill training, such as communication partner training (CPT). However, because of time constraints and perceived lack of skills and routines, such programmes, especially CPT, are not common practice among speech-language pathologists (SLPs).
Aims: To design and evaluate an early family-oriented intervention of persons with stroke-induced moderate to severe aphasia and their significant others in dyads. The intervention was designed to be flexible to meet the needs of each participant, to emotionally support the significant others and supply them with information needed, to include CPT that is easy to learn and conduct for SLPs, and to be able to provide CPT when the persons with aphasia still have access to SLP services.
Methods & Procedures: An evaluative multiple-case study, involving three dyads, was conducted no more than 2 months after the onset of aphasia. The intervention consisted of six sessions: three sessions directed to the significant other (primarily support and information) and three to the dyad (primarily CPT). The intervention was evaluated both qualitatively and quantitatively based on video recordings of conversations and self-assessment questionnaires.
Outcomes & Results: The importance of emotional support as well as information about stroke/aphasia was clearly acknowledged, especially by the significant others. All significant others perceived increased knowledge and understanding of aphasia and related issues.
Communicative skills (as manifested in the video recordings) showed improvements from pre- to post-intervention.
Conclusions: The results corroborate the need for individualised and flexible family-oriented SLP services that are broad in content. Furthermore, the results support the early initiation of such services with recurrent contact. The usefulness of CPT this early in the rehabilitation process was indicated but is yet to be proved.
A new multidimensional measure of children’s perceptions of control
Connell, J.P.
(1985)
Perceived control plays a central role in many motivational and cognitive accounts of behavior. In this study, a new 48-item self-report instrument, the Multidimensional Measure of Children's Perceptions of Control, is described. Perceptions of control are defined as children's understanding of the locus of the sufficient cause for success and failure outcomes. 3 dimensions of third- through ninth-grade children's perceptions of control are independently assessed: internal, powerful others, and unknown. Each of these sources of control is assessed within 3 behavioral domains: (a) cognitive, (b) social, and (c) physical. General items are also included. Perceptions of control over success outcomes and failure outcomes are assessed separately. The psychometric properties of the new measure's subscales are presented. Correlations of the new measure with measures of perceived and actual competence and findings demonstrating the sensitivity of the new measure to developmental, gender, and environmental influences are reported. It is argued that the new measure is an advance over existing measures of internal versus external locus of control in children because it provides domain-specific assessments of 3 separate dimensions of locus of control, including the previously untapped dimension of unknown control.
A new standing posture detector to enable people with multiple disabilities to control environmental stimulation by changing their standing posture through a commercial Wii Balance Board
Shih CH, Shih CT, Chiang MS.
(2010)
This study assessed whether two persons with multiple disabilities would be able to control environmental stimulation using body swing (changing standing posture) and a Wii Balance Board with a newly developed standing posture detection program (i.e. a new software program turns a Wii Balance Board into a precise standing posture detector). The study was performed according to an ABAB design, in which A represented baseline and B represented intervention phases. Both participants significantly increased their target response (body swing) to activate the control system to produce environmental stimulation during the intervention phases. Practical and developmental implications of the findings were discussed.
A nursing informatics research agenda for 2008-18: contextual influences and key components
Bakken, S., Stone, P. W., Larsson, E. L.
(2008)
A pilot evaluation of the Family Caregiver Support Program.
Chen, Y.-M., Hedrick, S. C., & Young, H. M.
(2010)
Abstract
The purposes of this study were to evaluate a federal and state-funded Family Caregiver Support Program (FCSP) and explore what types of caregiver support service are associated with what caregiver outcomes. Information was obtained on a sample of 164 caregivers' use of eleven different types of support service. Descriptive and comparative analyses were used to detect the differences between users and nonusers of caregiver support services. Six measures included were caregiving appraisal scale, caregiving burden, caregiving mastery, caregiving satisfaction, hour of care, and service satisfaction. Using consulting and education services is associated with lessening of subjective burden; using financial support services is associated with more beneficial caregiver appraisal, such as better caregiver mastery. The findings are practical and helpful for future caregiver service and program development and evaluation and policy making for supporting caregivers. In addition, the evaluation method demonstrated in the study provided a simple and moderately effective method for service agencies which would like to evaluate their family caregiver support services.
A pilot study of adjunctive family psychoeducation in adolescent major depression: Feasibility and treatment effect
Sanford, M., Boyle, M., McCleary, L., Miller, J., Steele, M., Duku, E., et al.
(2006)
Objective: To obtain preliminary evidence of the feasibility and effectiveness of adjunctive family psychoeducation in adolescent major depressive disorder. Method: Participants were from outpatient clinics in Hamilton and London, Ontario. Over 24 months, 41 adolescents ages 13 through 18 years meeting major depressive disorder criteria were recruited (31 in Hamilton, 10 in London). Participants were randomized to usual treatment or usual treatment plus family psychoeducation. Outcome measures were readministered at 2 weeks, mid-treatment, posttreatment, and 3-month follow-up. Intent-to-treat analyses used χ2 and t tests and growth curve analysis. Standardized effects based on growth curve estimates were calculated for continuous outcomes. Results: The London site was withdrawn because of poor participant retention. In Hamilton, no participant missed more than one assessment and there was good family psychoeducation adherence. Compared to controls, participants in the experimental group showed greater improvement in social functioning and adolescent-parent relationships (with medium standardized effect size >0.5), and parents reported greater satisfaction with treatment. Conclusions: There were positive treatment effects on family and social functioning processes postulated to mediate the clinical course of major depressive disorder. The study provides support for further evaluation of family psychoeducation in this clinical population. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
A Preliminary Study of an Extension of a Community Dialectic Behaviour Therapy (DBT) Programme to Adolescents in the Looked After Care System
James AC, Winmill L, Anderson C, Alfoadari K. A
(2011)
Background: Adolescents in the Looked After Care (LAC) system demonstrate high rates of psychiatric disorder and self‐harm; however, there is little evidence for therapies reducing self‐harm in this population. Method: An open evaluation of DBT for adolescents with repeated serious self‐harm in the LAC system was undertaken. Results: An intention‐to‐treat (ITT) analysis showed that DBT was successful at reducing the core elements of depression, hopelessness and self‐harm; however, 35% (7/20) failed to engage. Conclusion: DBT is a useful treatment option; the failure, however, of some adolescents to engage in therapy may be due to their higher initial rates of depression and hopelessness.
A Prospective Four-Year Followup Study of Children at Risk for ADHD: Psychiatric, Neuropsychological, and Psychosocial Outcome
Faraone, S. V, Biederman, J., Mennin, D., Gershon, J., & Tsuang, M. T.
(1996)
BACKGROUND:
Attention-deficit hyperactivity disorder (ADHD) is a familial disorder that places the siblings of ADHD children at high risk for ADHD, conduct, mood, and anxiety disorders. Although the pattern of psychiatric risk has been well documented by prior family studies, neither the short- nor long-term outcome of these high-risk siblings has been prospectively examined.
OBJECTIVE:
To document the 4-year psychiatric, psychosocial, and neuropsychological outcome of the siblings of children with ADHD.
METHOD:
DSM-III-R structured diagnostic interviews and blind raters were used to conduct a 4-year follow-up of siblings from ADHD and control families. The siblings were also evaluated for cognitive, achievement, social, school, and family functioning.
RESULTS:
At follow-up, significant elevations of behavioral, mood, and anxiety disorders were found among the siblings of ADHD children. The high-risk siblings had high rates of school failure and showed evidence of neuropsychological and psychosocial dysfunction. These impairments aggregated among the siblings who had ADHD.
CONCLUSIONS:
The siblings of ADHD children are at high risk for clinically meaningful levels of psychopathology and functional impairment. In addition to supporting hypotheses about the familial transmission of ADHD, the results suggest that the high-risk siblings might be appropriate targets for primary preventive interventions.
A prospective longitudinal study of attachment disorganization/disorientation
CARLSON, E. A.
(1998)
The research explores the antecedents and consequences of attachment disorganization from a prospective longitudinal perspective. The relations of attachment disorganization/disorientation to endogenous (e.g., maternal medical history, infant temperament) and environmental (e.g., maternal caregiving quality, infant history of abuse) antecedents and to behavioral consequences from 24 months to 19 years are examined. For the 157 participants in the longitudinal study, attachment disorganization was correlated significantly with environmental antecedents (e.g., maternal relationship and risk status, caregiving quality, and infant history of maltreatment), but not with available endogenous antecedents. Infant history of attachment disorganization was correlated with consequent variables related to mother-child relationship quality at 24 and 42 months, child behavior problems in preschool, elementary school and high school, and psychopathology and dissociation in adolescence. Structural models suggest that disorganization may mediate the relations between early experience and later psychopathology and dissociation. The findings are considered within a developmental view of psychopathology, that is, pathology defined in terms of process, as a pattern of adaptation constructed by individuals in their environments.
A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.
Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF.
(2013)
Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.
A qualitative study exploring patients’ and carers’ experiences of Early Supported Discharge services after stroke.
Cobley CS, Fisher RJ, Chouliara N, Kerr M, Walker MF.
(2013)
Objective: To investigate patients' and carers' experiences of Early Supported Discharge services and inform future Early Supported Discharge service development and provision.
Design and subjects: Semi-structured interviews were completed with 27 stroke patients and 15 carers in the Nottinghamshire region who met evidence-based Early Supported Discharge service eligibility criteria. Participants were either receiving Early Supported Discharge or conventional services.
Setting: Community stroke services in Nottinghamshire, UK.
Results: A thematic analysis process was applied to identify similarities and differences across datasets. Themes specific to participants receiving Early Supported Discharge services were: the home-based form of rehabilitation; speed of response; intensity and duration of therapy; respite time for the carer; rehabilitation exercises and provision of technical equipment; disjointed transition between Early Supported Discharge and ongoing rehabilitation services. Participants receiving Early Supported Discharge or conventional community services experienced difficulties related to: limited support in dealing with carer strain; lack of education and training of carers; inadequate provision and delivery of stroke-related information; disjointed transition between Early Supported Discharge and ongoing rehabilitation services.
Conclusions: Accelerated hospital discharge and home-based rehabilitation was perceived positively by service users. The study findings highlight the need for Early Supported Discharge teams to address information and support needs of patients and carers and to monitor their impact on carers in addition to patients, using robust outcome measures.
A qualitative study of older informal carers´ experiences and perceptions of their caring role
Nan Greenwood, Carole Pound, Sally Brearley, Raymond Smith
(2019)
Abstract
Background and aims
Unpaid family carers, or caregivers as they are also known, often play a vital role in supporting others with illness or disability living in the community. Overall numbers of carers are growing but numbers of older carers are increasing particularly rapidly as populations age worldwide. However, little research has focused on this important older group. This qualitative study therefore investigated older carers' experiences and their perceptions of their role.
Methods
Five digitally recorded focus groups with carers from Greater London were undertaken. Recordings were transcribed and analysed thematically.
Findings
Forty-four carers aged 70–87 years participated. Most were female and two-thirds were spouses or partners. Overall, the carers thought their experiences were similar to those of younger adult carers and included both satisfying and challenging facets. However, they thought that some of the more negative aspects of the role were more difficult for older carers. Their own declining physical and emotional health and strength were seen as making it harder to access support and maintain social contacts. Loneliness both outside and within relationships featured prominently and was perceived as especially significant for housebound carers and when caring for someone with dementia. Many of these older carers also worried about the future when they might no longer be able to be a carer due to their own ill-health or death.
Conclusions
Older carers find their role challenging and future investigations should focus on identifying means of reducing their isolation and supporting them with planning for the future.
A qualitative study of stroke patients' and carers' perceptions of the stroke family support organizer service
Lilley SA, Lincoln NB, Francis VM.
(2003)
Objective: To investigate stroke patients' and carers' perceptions of the family support organizer (FSO) service in order to highlight its value for potential purchasers and to help shed light on findings from randomized controlled trials.
Design and subjects: Twenty semi-structured interviews were undertaken with a sub sample of stroke patients and their primary informal carers after completion of nine-month outcome assessments as part of a randomized controlled trial.
Setting: Community stroke services in North Nottinghamshire, UK.
Results: Interviewees who received the service reported that the presence of an FSO was valuable in many respects, including helping to claim benefits, as a source of information on stroke, and providing continuity between stroke services. Emotional support was only described by a few. Interviewees who did not receive the service described feelings of isolation and being let down by other stroke services after discharge. They also reported problems accessing information. Help needed to address the practical problems after stroke was commonly reported. For those who did not receive the FSO service, access to support appeared to be found through other channels.
Conclusion: The FSO service appeared to be an information service. In order to evaluate community stroke services, a mixture of qualitative and quantitative outcome measures are necessary.
A randomized controlled trial evaluating the effect of a support and education programme for spouses of people affected by stroke.
Franzen-Dahlin A, Larson J, Murray V, Wredling R, Billing E.
(2008)
OBJECTIVE:
To determine whether a nurse-led support and education programme for spouses of patients affected by stroke improved the psychological health of the spouses.
DESIGN:
A longitudinal, open, randomized controlled trial.
SAMPLE:
One hundred spouses of stroke patients were randomly assigned to either an intervention or a control group.
SETTING:
The study was conducted in a hospital setting.
INTERVENTION:
The intervention consisted of six group meetings during six months, with a follow-up after further six months. Comparison between the intervention and the control groups was made at baseline, after six and 12 months using analysis with repeated measures.
MAIN MEASURES:
The Comprehensive Psychopathological Rating Scale--Self-Affective for psychological health.
RESULTS:
No significant difference was found between the intervention and control groups concerning overall psychological health. However, a subanalysis revealed that those who participated more frequently in the group meetings (five or six times) had significantly stronger psychological health (P<0.05). Knowledge about stroke increased over time in both groups, but participants in the intervention group learned more (P=0.041).
CONCLUSION:
Encouraging participation in the group meetings of a support programme might have a positive effect on psychological health.
A randomized controlled trial evaluating the effect of a support end education programme for spouses of people affected by stroke
Franzén-Dahlin, Å., Larson, J., Murray, V., Wredling, R., & Billing, E.
(2008)
Objective: To determine whether a nurse-led support and education programme for
spouses of patients affected by stroke improved the psychological health of the
spouses.
Design: A longitudinal, open, randomized controlled trial.
Sample: One hundred spouses of stroke patients were randomly assigned to either
an intervention or a control group.
Setting: The study was conducted in a hospital setting.
Intervention: The intervention consisted of six group meetings during six months,
with a follow-up after further six months. Comparison between the intervention and
the control groups was made at baseline, after six and 12 months using analysis with
repeated measures.
Main measures: The Comprehensive Psychopathological Rating Scale –
Self-Affective for psychological health.
Results: No significant difference was found between the intervention and control
groups concerning overall psychological health. However, a subanalysis revealed that
those who participated more frequently in the group meetings (five or six times) had
significantly stronger psychological health (P50.05). Knowledge about stroke
increased over time in both groups, but participants in the intervention group learned
more (P ¼ 0.041).
Conclusion: Encouraging participation in the group meetings of a support
programme might have a positive effect on psychological health.
A randomized controlled trial of CBT therapy for adults with ADHD with and without medication
Weiss, M., Murray, C., Wasdell, M., Greenfield, B., Giles, L., & Hechtman, L.
(2012)
Background
Previous studies of psychological treatment in adults with ADHD have not controlled for medication status and include either medicated participants or mixed samples of medicated and unmedicated participants. The objective of this study is to examine whether use of medication improves outcome of therapy.
Method
This was a secondary analysis comparing 23 participants randomized to CBT and Dextroamphetamine vs. 25 participants randomized to CBT and placebo. Both patients and investigators were blind to treatment assignment. Two co-primary outcomes were used: ADHD symptoms on the ADHD-RS-Inv completed by the investigator and improvement in functioning as reported by the patient on the Sheehan Disability Scale.
Results
Both groups showed robust improvement in both symptoms and functioning, but the use of medication did not significantly improve outcome over and above use of CBT and placebo.
Conclusion
This study replicates previous work demonstrating that CBT is an effective treatment for ADHD in adults. Within the limits of this pilot, secondary analysis we were not able to demonstrate that medication significantly augments the outcome of CBT therapy for adults with ADHD. The study was funded by GlaxoSmithKline, Clinical Trials Registry #GSK707.
A Randomized Controlled Trial of Mother- Infant Psychoanalytic Treatment: I. Outcomes on Self-Report Questionnaires and External Ratings
SALOMONSSON, B. & SANDELL, R.
(2011)
Mother-infant relationship disturbances occur in three domains: maternal distress, infant functional problems, and relationship difficulties. They constitute common clinical problems. In Sweden, they are usually handled by nurses as part of public Child Health Centre care. Severe cases are referred to child psychiatry services. This randomized controlled trial compared two groups of mother-infant dyads in a Stockholm sample. One received only Child Health Centre care (the "CHCC" group) while the other received mother-infant psychoanalytic treatment plus CHCC (the "MIP" group). Eighty dyads of mothers and infants under 1½ years of age where the mothers had serious concerns about themselves in their role as mothers, their infants' well-being, or the mother-baby relationship were randomly selected for either the MIP or the CHCC group. The primary outcomes were mother-reported depression, mother-reported infant functional problems, and interviewer-based relationship assessments, all at 6 months after joining the project. Secondary outcomes were mother-reported stress and general psychic distress, externally rated video-recorded interactions, and the consumption of healthcare at the CHC, again all after 6 months. Intent-to-treat analyses of Treatment × Time effects significantly favored MIP treatment for maternal depression, mother-infant relationships, and maternal sensitivity. Effects were nearly significant on maternal stress, but nonsignificant on mother-reported infant functional problems, general psychic distress, maternal interactive structuring and nonintrusiveness, infant responsiveness and involvement, and healthcare consumption. MIP treatment improved mother-infant relationships and maternal sensitivity and depression, all of which are known to influence child development. If effects persist and are reproduced, MIP treatment holds promise for more widespread use.
A randomized controlled trial of motherinfant psychoanalytic treatment: II. Predictive and moderating influences of qualitative patient factors
SALOMONSSON, B. & SANDELL, R.
(2011)
A randomized control trial was performed on 75 dyads in Stockholm, Sweden, with infants under 1½ years. It recruited mothers who worried about the babies, themselves as mothers, and/or the mother-baby relationship. Two groups of mother-infant dyads were compared. One received only Child Health Centre care (the "CHCC" group) while the other received mother-infant psychoanalytic treatment plus CHCC (the "MIP" group). Significant treatment effects were found on mother-reported depression, interviewer-rated dyadic relationship qualities and externally rated maternal sensitivity, and near-significant effects on mother-reported stress, all in favor of MIP. The objective of this study is to investigate the predictive and moderating influences on outcomes by qualitatively assessed maternal and infant characteristics. The qualitative factors covered maternal suitability for psychoanalysis, and "ideal types" of mother and child, respectively. Outcome measures from two interviews with a 6-month interval were depression (Edinburgh Postnatal Depression Scale (J. Cox, J. Holden, & R. Sagovsky, 1987), stress (Swedish Parental Stress Questionnaire (M. Östberg, B. Hagekull, & S. Wettergren, 1997), distress (Swedish Symptom Checklist-90 (SCL-90; L.R. Derogatis, 1994; M. Fridell, Z. Cesarec, M. Johansson, & S. Malling Thorsen, 2002) and infant social and emotional functioning (Ages and Stages Questionnaire: Social-Emotional (J. Squires, D. Bricker, K. Heo, & E. Twombly, 2002), relationship qualities (Parent-Infant Global Assessment Scale (PIR-GAS; ZERO TO THREE, 2005), and videotaped interactions (Emotional Availability Scales, Z. Biringen, J.L. Robinson, & R.N. Emde, 1998). Suitability for psychoanalysis predicted outcome only on the PIR-GAS. Two overarching maternal ideal types were created, reflecting their attitude to the psychoanalytic process: "Participators" and "Abandoned." The Participators benefited more from MIP than they did from CHCC on maternal interactive sensitivity. A contrasting, but nonsignificant, pattern was found among the Abandoned mothers. Two ideal types of babies emerged: those "Affected" and "Unaffected" by the disturbance, respectively. Among Affected babies, dyadic relationships and sensitivity among their mothers improved significantly more from MIP than they did from CHCC. The superior effects of MIP applied especially to Participator mothers and Affected infants. For Abandoned mothers and Unaffected infants, CHCC seemed to be of equal value.
A randomized pilot study of the engaging moms program for family drug court
Dakof GA, Cohen JB, Henderson CE, Duarte E, Boustani M, Blackburn A, et al.
(2010)
In response to the need for effective drug court interventions, the effectiveness of the Engaging Moms Program (EMP) versus Intensive Case Management Services (ICMS) on multiple outcomes for mothers enrolled in family drug court was investigated. In this intent-to-treat study, mothers (N = 62) were randomly assigned to either usual drug court care or the Engaging Moms drug court program. Mothers were assessed at intake and 3, 6, 12, and 18 months following intake. Results indicated that at 18 months post drug court enrollment, 77% of mothers assigned to EMP versus 55% of mothers assigned to ICMS had positive child welfare dispositions. There were statistically significant time effects for both intervention groups on multiple outcomes including substance use, mental health, parenting practices, and family functioning. EMP showed equal or better improvement than ICMS on all outcomes. The results suggest that EMP in family drug court is a viable and promising intervention approach to reduce maternal addiction and child maltreatment.
A randomized trial of family focused treatment for adolescents and young adults at risk for psychosis: study rationale, design and methods
Schlosser DA, Miklowitz DJ, O'Brien MP, De Silva SD, Zinberg JL, Cannon TD.
(2012)
This article outlines the rationale for a family-focused psychoeducational intervention for individuals at risk for psychosis and explains the design of a randomized multisite trial to test its efficacy. Adolescents and young adults that meet criteria for a psychosis risk syndrome at eight participating North American Prodromal Longitudinal Study sites are randomly assigned to a 6-month, 18-session family-focused treatment for prodromal youth or a 3-session psychoeducational enhanced care control intervention and followed over 1 year. The results will determine whether the use of a family intervention is able to significantly improve functional outcomes, decrease the severity of positive symptoms and possibly prevent the onset of full psychosis, compared with enhanced care alone. Levels of familial criticism at baseline are hypothesized to moderate responses to family intervention. Improvements in knowledge about symptoms, family communication and problem solving will be tested as mediators in the pathways between treatment assignment and clinical or psychosocial outcomes in high-risk youth. The ongoing trial evaluates whether a non-invasive psychosocial approach can significantly enhance functional outcomes and prevent the ultra high risk patients from developing psychosis. The results will provide an important stepping stone in the movement of the field from refining early detection strategies to developing efficacious preventative treatments.
A randomized trial to evaluate an education programme for patients and carers after stroke
Smith J, Forster A, Young J.
(2004)
Objectives: To evaluate the effectiveness of an education programme for patients and carers recovering from stroke.
Design: Randomized controlled trial.
Subjects and setting: One hundred and seventy patients admitted to a stroke rehabilitation unit and 97 carers of these patients.
Interventions: The intervention group received a specifically designed stroke information manual and were invited to attend education meetings every two weeks with members of their multidisciplinary team. The control group received usual practice.
Measures: Primary outcome was knowledge of stroke and stroke services. Secondary outcomes were handicap (London Handicap Scale), physical function (Barthel Index), social function (Frenchay Activities Index), mood (Hospital Anxiety and Depression Scale) and satisfaction (Pound Scale). Carer mood was measured by the General Health Questionnaire-28.
Results: There was no statistical evidence for a treatment effect on knowledge but there were trends that favoured the intervention. The education programme was associated with a significantly greater reduction in patient anxiety score at both three months (p=0.034) and six months (p=0.021) and consequently fewer 'cases' (Hospital Anxiety and Depression Scale anxiety subscale score ≥ 11). There were no other significant statistical differences between the patient or carer groups for other outcomes, although there were trends in favour of the education programme.
Conclusion: An education programme delivered within a stroke unit did not result in improved knowledge about stroke and stroke services but there was a significant reduction in patient anxiety at six months post stroke onset.
A rating scale for depression
Hamilton M.
(1960)
A response to Aldridge and Becker – ’Disability rights and the denial of young carers: the danger of zero-sum arguments’
Olsen, R., & Parker, H.
(1997)
A responsibility that never rests – the life situation of a family caregiver to an older person
Jarling Aleksandra, Rydström Ingela, Ernsth-Bravell Marie, Nyström Maria, Dalheim-Englund Ann-Charlotte
(2019)
Abstract [en]
Background
When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well-being and daily life.
Aim
This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home.
Methods
In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process.
Findings
In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships.
Conclusion
A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.
A review of policies on alcohol use during pregnancy in Australia and other English-speaking countries, 2006
O’Leary, CM:, Heuzenroeder, L., Elliott, E.J. & Bower, C.
(2007)
It is well accepted that heavy alcohol consumption during pregnancy is a risk factor for fetal alcohol spectrum disorder, but research findings for exposure to low to moderate alcohol levels during pregnancy are equivocal, allowing a range of interpretations. The 2001 guideline from the National Health and Medical Research Council (NHMRC) for low-risk drinking for "women who are pregnant or might soon become pregnant" recommends fewer than seven standard drinks per week, and no more than two standard drinks on any one day. This position has polarised health professional and consumer opinion in Australia. The NHMRC guidelines on alcohol are scheduled for review in 2007. We surveyed the alcohol and pregnancy policies and clinical practice guidelines of Australia and six other English-speaking countries to identify current policy. Documents were obtained through Internet searches and direct contact with the relevant organisations. The policies and guidelines varied both across and within countries, and the NHMRC guideline, while not universally supported in Australia, is in step with the policies of the United Kingdom and Canada. Research is needed to elucidate the true association between low to moderate alcohol consumption and fetal harm, the impact of different policies on rates of maternal alcohol consumption during pregnancy, and any untoward outcomes of an abstinence message, to inform and underpin future policy development in Australia.
A review of programs to alleviate the burden of informal caregivers of dependent persons.
Garces, J., Carretero, S., Rodenas, F., & Aleman, C.
(2010)
The review of interventions currently available to alleviate the burden of informal caregivers of dependent persons has both social and political relevance considering the increasing number of elderly dependent persons. Respite services and programs for psycho-social intervention are the main methods of dealing with this burden. Study of the main research carried out to date on such interventions enables us to organize more efficient services, especially considering the enactment of the Law on Dependence in Spain in January 2007 and the need for other European and international governments to establish systems to meet the needs of the growing dependent population.
A Secure Base: Parent-Child Attachment and Healthy Human Development
Bowlby, J.
(1988)
A Semiotic Perspective for AAC
Soto, G. och Olmstead, W.
(1993)
This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).
A Semiotic Perspective for AAC
Soto, G. och Olmstead, W.
(1993)
This paper introduces semiotics to the field of augmentative and alternative communication (AAC). Semiotics includes the study of all types of communicative acts (signs) from language and other complex forms of human communication to animal communication and natural events in our environment. Its object of study overlaps that of AAC: communication. This paper presents semiotics as a methodological and/or theoretical framework that can be useful for AAC researchers and/or professionals to validate AAC terminology, identify sign characteristics, operationalize sign variables, expand sign taxonomies, and understand sign transmission processes (e.g., production and interpretation).
A separate structured conversation with relatives of patients enrolled for advanced palliative home care: a care development project
Carlsson ME
(2014)
OBJECTIVE: One prerequisite for palliative home care is the relatives'
participation in the care. The relatives' situation in palliative home care is
unique, as they support the sick person and also have a great need for support
themselves. The aim of this care development project was to develop and implement
separate structured conversations (SSC) with relatives of patients of an advanced
palliative home care team (APHCT). METHOD: During the project, 61 conversations were held and 55 relatives answered
a questionnaire. The questionnaire, eight semistructured interviews with
relatives, and three focus-group discussions with nurses constitute the material
for the evaluation. RESULTS: Relatives have difficulties separating the SSC from the APHCT's care as
a whole. They underline that the SSC was a part of an ongoing process. They also
emphasize the value of having a conversation of their own in which the patient
was absent, and in which the focus was on the relative's situation. For some, the
conversation took place at the APHCT premises. The advantages of that were more
privacy and the opportunity to walk around the inpatient palliative care units.
The main problem during the project was conducting the SSC soon after the patient
was enrolled with the APHCT. SIGNIFICANCE OF RESULTS: Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their
willingness to provide care in the home, and mapping out their situation and
social network, is a way to support both the relatives and the patients. The
common structure of the conversations facilitated the assessment of the
relatives' situation but did not hinder individualization according to the
relatives' needs. The assumption is that all relatives should be offered a
conversation.
A separate structured conversation with relatives of patients enrolled for advanced palliative home care: a care development project
Carlsson ME
(2014)
OBJECTIVE: One prerequisite for palliative home care is the relatives'
participation in the care. The relatives' situation in palliative home care is
unique, as they support the sick person and also have a great need for support
themselves. The aim of this care development project was to develop and implement
separate structured conversations (SSC) with relatives of patients of an advanced
palliative home care team (APHCT). METHOD: During the project, 61 conversations were held and 55 relatives answered
a questionnaire. The questionnaire, eight semistructured interviews with
relatives, and three focus-group discussions with nurses constitute the material
for the evaluation. RESULTS: Relatives have difficulties separating the SSC from the APHCT's care as
a whole. They underline that the SSC was a part of an ongoing process. They also
emphasize the value of having a conversation of their own in which the patient
was absent, and in which the focus was on the relative's situation. For some, the
conversation took place at the APHCT premises. The advantages of that were more
privacy and the opportunity to walk around the inpatient palliative care units.
The main problem during the project was conducting the SSC soon after the patient
was enrolled with the APHCT. SIGNIFICANCE OF RESULTS: Routinely offering one separate structured conversation with relatives with the intention of answering questions, talking about their
willingness to provide care in the home, and mapping out their situation and
social network, is a way to support both the relatives and the patients. The
common structure of the conversations facilitated the assessment of the
relatives' situation but did not hinder individualization according to the
relatives' needs. The assumption is that all relatives should be offered a
conversation.
A small-scale randomized controlled trial of the revised new forest parenting programme for preschoolers with attention deficit hyperactivity disorder
Thompson, M. J. J., Laver-Bradbury, C., Ayres, M., Le Poidevin, E., Mead, S., Dodds, C., … Sonuga-Barke, E. J. S.
(2009)
The revised new forest parenting programme (NFPP) is an 8-week psychological intervention designed to treat ADHD in preschool children by targeting, amongst other things, both underlying impairments in self-regulation and the quality of mother-child interactions. Forty-one children were randomized to either the revised NFPP or treatment as usual conditions. Outcomes were ADHD and ODD symptoms measured using questionnaires and direct observation, mothers' mental health and the quality of mother-child interactions. Effects of the revised NFPP on ADHD symptoms were large (effect size >1) and significant and effects persisted for 9 weeks post-intervention. Effects on ODD symptoms were less marked. There were no improvements in maternal mental health or parenting behavior during mother-child interaction although there was a drop in mothers' negative and an increase in their positive comments during a 5-min speech sample. The small-scale trial, although limited in power and generalizability, provides support for the efficacy of the revised NFPP. The findings need to be replicated in a larger more diverse sample.
A smartphone-based fall detection system
Abbate S, Avvenuti M, Bonatesta F, Cola G, Corsini P, Vecchio A.
(2012)
Falls are a major cause of injuries and hospital admissions among elderly people. Thus, the caregiving process and the quality of life of older adults can be improved by adopting systems for the automatic detection of falls. This paper presents a smartphone-based fall detection system that monitors the movements of patients, recognizes a fall, and automatically sends a request for help to the caregivers. To reduce the problem of false alarms, the system includes novel techniques for the recognition of those activities of daily living that could be erroneously mis-detected as falls (such as sitting on a sofa or lying on a bed). To limit the intrusiveness of the system, a small external sensing unit can also be used for the acquisition of movement data.
A study of the family burden of 150 family members of schizophrenic patients
Lowyck B, De Hert M, Peeters E, Wampers M, Gilis P, Peuskens J.
(2004)
Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB. The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatric. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
A support group programme for family members: an intervention during ongoing palliative care.
Henriksson, A.
(2012)
A support group programme for relatives during the late palliative phase
Henriksson, A. and B. Andershed
(2007)
This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.
Effects of guided care on family caregivers
Wolff, J. L., Giovannetti, E. R., Boyd, C. M., Reider, L., Palmer, S., Scharfstein, D., et al.
(2010)
Effects of maternal mental retardation and poverty on intellectual, academic, and behavioural status of school-age children
Feldman, MA., & Walton-Allen, N.
(1997)
The impact of low maternal IQ and poverty was examined through comparison of 27 school-age children of mothers with mild mental retardation to 25 similarly impoverished children of mothers without mental retardation. The children whose mothers had mental retardation had lower IQs and academic achievement and more behavior problems. Not one child with a mother who had mental retardation was problem-free. Boys were affected more severely than were girls. Quality of the home environment and maternal social supports were lower in the group with maternal mental retardation; both measures were negatively correlated with child behavior disorders. Results suggest that being raised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty alone.
Effects of maternal stimulant medication on observed parenting in mother-child dyads with attentiondeficit/ hyperactivity disorder
Chronis-Tuscano, A., Rooney, M., Seymour, K. E., Lavin, H. J., Pian, J., Robb, A., … Stein, M. A.
(2010)
This pilot study of 23 mothers with attention-deficit/hyperactivity disorder (ADHD) and their offspring with ADHD examined the effects of maternal stimulant medication on observed interactions. Parent-child interactions were observed using a structured protocol before and after mothers underwent a 5-week, double-blind stimulant titration. Despite dramatic effects of medication on adult ADHD symptoms, this small pilot and open label laboratory-based study did not identify maternal stimulant effects on observed parenting or child behavior. Given the documented impairments in parenting displayed by adults with ADHD, behavioral parenting interventions may be needed in conjunction with medication for mothers with ADHD to optimize family outcomes.
Effects of Mental illness on family quality of life
Walton-Moss, B., Gerson, L., Rose, L.
(2005)
Worldwide, at least 25% of persons and their families are affected by mental illness resulting in significant stress and burden; yet little is known about how the illness affects quality of family life. In this paper, we report a secondary analysis of a grounded theory study that identified the process by which 17 families managed mental illness over time. Families were characterized as Hanging On, Being Stable, or Doing Well based on their responses to caring for relatives with mental illness. Most of the families perceived themselves as Being Stable or Doing Well and four families perceived themselves as Hanging On. In this paper, these descriptors of family quality of life, interpreted within the context of family development and illness trajectories, are presented as a focus of professional support and intervention.
Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial
Lam WK, Fals-Stewart W, Kelley ML.
(2008)
This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, posttreatment, 6- and 12-month follow up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.
Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial.
Lam WK, Fals-Stewart W, Kelley ML.
(2008)
This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, post-treatment, 6-and 12-month follow-up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.
Keywords: children of alcoholics, parent training, behavioral couples therapy, alcoholism treatment, child functioning
Effects of the "Preparing for the Drug Free Years" curriculum on growth in alcohol use and risk for alcohol use in early adolescence
Jisuk P, Rick K, Hawkins JD, Kevin PH, Terry ED, Susan CD, et al.
(2000)
Preparing for the Drug-Free Years (PDFY) is a curriculum designed to help parents learn skills to consistently communicate clear norms against adolescent substance use, effectively and proactively manage their families, reduce family conflict, and help their children learn skills to resist antisocial peer influences. This study examined the effects of PDFY on the trajectories of these factors, as well as on the trajectory of alcohol use from early to mid adolescence. The sample consisted of 424 rural families of sixth graders from schools randomly assigned to an intervention or a control condition. Data were collected from both parents and students at pretest, posttest, and 1-, 2- and 3 1/2-year follow-ups. Latent growth models were examined. PDFY significantly reduced the growth of alcohol use and improved parent norms regarding adolescent alcohol use over time. Implications for prevention and evaluation are discussed.
Effects of war and organized violence on children: a study of Bosnian refugees in Sweden
Angel, B., Hjern, A., & Ingleby, D.
(2001)
Data from 99 school-aged Bosnian refugee children living in Sweden were analyzed to reveal the patterns of war stress experienced and the relation between these stressors and current psychological problems. A significant pattern of associations emerged. When children had experienced much stress, talking about their experiences seemed to exacerbate their negative effects.
Effects on the child of alcohol abuse during pregnancy. Retrospective and prospective studies
Olegård R, Sabel KG, Aronsson M, Sandin B, Johansson PR, Carlsson C, Kyllerman M, Iversen K, Hrbek A.
(1979)
Retrospective and prospective investigations of children to alcoholic women gave an incidence of fetal alcohol lesion of one per 300 deliveries of whom half had the complete fetal alcohol syndrome. Perinatal and infant mortalities were increased seven to tenfold and low birth weight (less than or equal to 2 500 g), preterm deliveries (less than 37 weeks) and smallness for gestational age (less than -2 S.D.) were increased eightfold, threefold and twelvefold, respectively. Small size at birth correlated with reduced mental performance later in life, 58% had IQ below 85 and 19% below 70.8% had cerebral palsy. The incidence of cerebral palsy associated with maternal inebriety was 1/5 000 deliveries, i.e. every sixth case of cerebral palsy. Tracing of alcoholic women during pregnancy and treatment gave favourable effect on intrauterine growth when sobriety could be induced early in pregnancy but could not protect from functional brain disturbance measured by neurological performance and be evoked response electroencephalography. Damage to the fetus by alcohol is now the largest known health hazard by a noxious agent that is preventable.
Effekt av strukturert problemlösning I familier med demens
Ulstein, I. and A. Johannesson
(2008)
Effekter av långvarig extrem stress på relationen mellan föräldrar och barn.
Almqvist, K.
(2011)
Teori och behandling av flyktingbarn med svår psykisk ohälsa
Flyktingbarn som söker en fristad i vårt land påverkas ofta av egna svåra upplevelser av krig, våld och övergrepp. Många utvecklar allvarliga tecken till psykisk ohälsa. En del barn utvecklar ett apatiskt uppgivenhetssyndrom. När de så kallade apatiska flyktingbarnen dök upp i början av 2000-talet var bristen på kunskap stor. Inte sällan ledde det till att barnen inte fick hjälp eller att insatserna försämrade barnens tillstånd. I dag har både forskning och erfarenheterna av förebyggande insatser och behandling gjort stora framsteg.
Denna bok är den första i sitt slag om teori och behandling av barn med svåra uppgivenhetssyndrom, kunskaper som rör alla traumatiserade flyktingbarn som, om de inte behandlas på rätt sätt, riskerar att utveckla uppgivenhetssyndrom. Bokens författare är forskare, läkare, psykologer, sjukgymnaster, jurister, psykoterapeuter, sjuksköterskor, socionomer och socialpedagoger. Boken tar bland annat upp:
Effekter av långvarig stress på föräldra-barnrelationen
Biologiska och psykologiska effekter av trauma och uppgivenhetssyndrom
Beskrivningar av olika behandlingsmodeller
Nutritionsbehandling vid uppgivenhetssyndrom
Förebyggande insatser
Historiska erfarenheter av uppgivenhetssyndrom
Mänskliga rättigheter och etik
Asylprocessen och juridik
Hur påverkas behandlaren?
Boken riktar sig till alla som möter flyktingbarn med svår psykisk ohälsa eller uppgivenhetssyndrom: läkare, sjuksköterskor, studenter och andra inom vård, socialtjänst, skola, förskola, kommuner och andra myndigheter men också alla viktiga personer som finns runt barnen och deras familjer i sociala nätverk och frivilligorganisationer.
Effekter för barn av stödprogram riktade till barn och/eller föräldrar när en förälder missbrukar alkohol eller andra droger- en kunskapsöversikt. Barn som anhöriga 2016:4
Järkestig Berggren Ulrika, Hanson Elizabeth
(2016)
Syftet med denna kunskapsöversikt är att systematiskt kartlägga, granska och sammanställa kunskap om vilka utvärderade metoder och program som finns för att ge stöd till barn och/eller förälder när en förälder är beroende av alkohol eller andra droger. Kunskapsöversikten syftar också till att ge underlag för slutsatser om behov och riktning för vidare kunskapsutveckling och forskning.
Efficacy and safety of atomoxetine as add-on to psychoeducation in the treatment of attention deficit/hyperactivity disorder: a randomized, double-blind, placebo-controlled study in stimulant-naïve Swedish children and adolescents
Svanborg P, Thernlund G, Gustafsson PA, Hägglöf B, Poole L, Kadesjö B, et al.
(2009)
OBJECTIVE: The primary objective of this study was to assess the impact of atomoxetine in combination with psychoeducation, compared with placebo and psychoeducation, on health-related quality of life (HRQL) in Swedish stimulant-naïve pediatric patients with attention deficit/hyperactivity disorder (ADHD). HRQL results will be presented elsewhere. Here, psychoeducation as well as efficacy and safety of the treatment are described. PATIENTS AND METHODS: A total of 99 pediatric ADHD patients were randomized to a 10-week double-blind treatment with atomoxetine (49 patients) or placebo (50 patients). Parents of all patients received four sessions of psychoeducation. Atomoxetine was dosed up to approximately 1.2 mg/kg day (< or = 70 kg) or 80 mg/day (> 70 kg). Improvement of ADHD symptoms was evaluated using the ADHD rating scale (ADHD-RS) and clinical global impression (CGI) rating scales. Safety was assessed based on adverse events (AEs). RESULTS: The study population was predominantly male (80.8%) and diagnosed with the combined ADHD subtype (77.8%). The least square mean (lsmean) change from baseline to endpoint in total ADHD-RS score was -19.0 for atomoxetine patients and -6.3 for placebo patients, resulting in an effect size (ES) of 1.3 at endpoint. Treatment response (reduction in ADHD-RS score of > or = 25 or > or = 40%) was achieved in 71.4 or 63.3% of atomoxetine patients and 28.6 or 14.3% of placebo patients. The lsmean change from baseline to endpoint in CGI-Severity was -1.8 in the atomoxetine group compared with -0.3 in the placebo group. The difference between treatments in CGI-Improvement at endpoint was -1.4 in favor of atomoxetine. No serious AEs occurred. The safety profile of atomoxetine was in line with the current label. CONCLUSIONS: Atomoxetine combined with psychoeducation was superior to placebo and psychoeducation in ADHD core symptoms improvement. The large ES might be a result of including stimulant-naïve patients only, but also may indicate a positive interaction between atomoxetine treatment and psychoeducation, possibly by increased compliance.
Efficacy of a camp-based intervention for childhood traumatic grief
McClatchey, I.S., Vonk, E.M. & Palardy, G.
(2009)
Objective: This study examined the efficacy of a short-term, camp-based, trauma-focused grief intervention in reducing traumatic grief and posttraumatic stress disorder symptoms in parentally bereaved children. Method: For this nonequivalent comparison group study, 100 children were split into two groups, with one group serving as the immediate treatment group and the second group serving as the delayed treatment group. Results: The results were analyzed using chi-square, independent samples t tests, multiple and logistic regression and showed this short-term intervention to be followed by reduced traumatic grief and posttraumatic stress disorder symptoms. Conclusions: The results are discussed in relation to current research on and practice with bereaved children as well as implications for future research.
Efficacy of a home-visiting intervention aimed at improving maternal sensitivity, child attachment, and behavioral outcomes for maltreated children: a randomized control trial
MOSS, E., DUBOIS-COMTOIS, K., CYR, C., TARABULSY, G. M., ST-LAURENT, D. & BERNIER, A.
(2011)
The efficacy of a short-term attachment-based intervention for changing risk outcomes for children of maltreating families was examined using a randomized control trial. Sixty-seven primary caregivers reported for maltreatment and their children (1-5 years) were randomly assigned to an intervention or control group. The intervention group received 8 weekly home visits directed at the caregiver-child dyad and focused on improving caregiver sensitivity. Intervention sessions included brief discussions of attachment-emotion regulation-related themes and video feedback of parent-child interaction. Comparison of pre- and posttest scores revealed significant improvements for the intervention group in parental sensitivity and child attachment security, and a reduction in child disorganization. Older children in the intervention group also showed lower levels of internalizing and externalizing problems following intervention. This is the first study to demonstrate the efficacy of short-term attachment-based intervention in enhancing parental sensitivity, improving child security, and reducing disorganization for children in the early childhood period.
Efficacy of a Psychoeducative Group Program for Caregivers of Demented Persons Living at Home: A Randomized Controlled Trial
Hébert R, Lévesque L, Vézina J, Lavoie J-P, Ducharme F, Gendron C, et al.
(2003)
Efficacy of meta-cognitive therapy for adult ADHD
Solanto, M. V, Marks, D. J., Wasserstein, J., Mitchell, K., Abikoff, H., Alvir, J. M. J., & Kofman, M. D.
(2010)
OBJECTIVE:
The authors investigated the efficacy of a 12-week manualized meta-cognitive therapy group intervention designed to enhance time management, organization, and planning in adults with attention deficit hyperactivity disorder (ADHD).
METHOD:
Eighty-eight clinically referred adults who met DSM-IV criteria for ADHD according to clinical and structured diagnostic interviews and standardized questionnaires were stratified by ADHD medication use and otherwise randomly assigned to receive meta-cognitive therapy or supportive psychotherapy in a group modality. Meta-cognitive therapy uses cognitive-behavioral principles and methods to impart skills and strategies in time management, organization, and planning and to target depressogenic and anxiogenic cognitions that undermine effective self-management. The supportive therapy condition controlled for nonspecific aspects of treatment by providing support while avoiding discussion of cognitive-behavioral strategies. Therapeutic response was assessed by an independent (blind) evaluator via structured interview before and after treatment as well as by self-report and collateral informant behavioral ratings.
RESULTS:
General linear models comparing change from baseline between treatments revealed statistically significant effects for self-report, collateral report, and independent evaluator ratings of DSM-IV inattention symptoms. In dichotomous indices of therapeutic response, a significantly greater proportion of members of the meta-cognitive therapy group demonstrated improvement compared with members of the supportive therapy group. Logistic regression examining group differences in operationally defined response (controlling for baseline ADHD severity) revealed a robust effect of treatment group (odds ratio=5.41; 95% CI=1.77-16.55).
CONCLUSIONS:
Meta-cognitive therapy yielded significantly greater improvements in dimensional and categorical estimates of severity of ADHD symptoms compared with supportive therapy. These findings support the efficacy of meta-cognitive therapy as a viable psychosocial intervention.
Dementia caregiver intervention research: in search of clinical significance
Schulz R, O'Brien A, Czaja S, Ory M, Norris R, Martire LM, et al.
(2002)
Purpose: We reviewed intervention studies that reported dementia caregiver outcomes published since 1996, including psychosocial interventions for caregivers and environmental and pharmacological interventions for care recipients. Our goal was to focus on issues of clinical significance in caregiver intervention research in order to move the field toward a greater emphasis on achieving reliable and clinically meaningful outcomes. Design and Methods: MEDLINE, PsycINFO, and Cumulative Index to Nursing & Allied Health databases from 1996 through 2001 were searched to identify articles and book chapters mapping to two medical subject headings: caregivers and either dementia or Alzheimer's disease. Articles were evaluated on two dimensions, outcomes in four domains thought to be important to the individual or society and the magnitude of reported effects for these outcomes in order to determine if they were large enough to be clinically meaningful. Results: Although many studies have reported small to moderate statistically significant effects on a broad range of outcomes, only a small proportion of these studies achieved clinically meaningful outcomes. Nevertheless, caregiving intervention studies have increasingly shown promise of affecting important public health outcomes in areas such as service utilization, including delayed institutionalization; psychiatric symptomatology, including the successful treatment of major and minor depression; and providing services that are highly valued by caregivers. Implications: Assessment of clinical significance in addition to statistical significance is needed in this research area. Specific recommendations on design, measurement, and conceptual issues are made to enhance the clinical significance of future research.
Dementia caregivers' most pressing concerns
Nichols, L. O., Martindale-Adams, J., Greene, W. A., Burns, R., Graney, M. J., & Lummus, A.
(2009)
Dementia in a socio-cultural context: an idea whose time has come
Downs, M.
(2000)
Dementia, design and technology : time to get involved
Topo, P. & Roslund, B., editors.
(2009)
Den fulbordade livscykeln
Eriksson, E. H., & J., E.
(2004)
I Den fullbordade livscykeln blickar Erik H Erikson tillbaka på sin berömda psykosociala utvecklingsteori. Människans psykiska utveckling fortgår i åtta olika stadier livet igenom, enligt Erikson. Han betraktar här, 80 år gammal, sin tankebyggnad utifrån den sista livsfasen där han själv befinner sig – vishetens, förtvivlans och försoningens fas. Boken ger en sammanfattning av hans teorier och ett koncentrat av hans livsvisdom.
I ljuset av den sista perioden i livet får Eriksons framställning en djupt existentiell prägel. Han uppehåller sig bl a vid ritualiseringen i samspelet mellan människor och det upplyftande mötet med "den andre", vilket håller hoppet vid liv och kan ge näring åt tron på någonting bortom den fullbordade livscykeln.
I ett tillägg i denna utgåva inför Joan Erikson, hans hustru och samarbetspartner i över 60 år, ett nionde stadium, åldrandet i 80-90-årsåldern. Själv över 90 lägger hon vidare ett samhälleligt-kulturellt perspektiv på åldrandet och tar slutligen upp begreppet gerotranscendens, tendensen att gamla människor löser upp tids-rumsperspektivet på ett sätt som inte sällan vidgar det och möjliggör en fördjupad andlighet.
Den kommunala invandringspolitiken. Arenor, aktörer och barriärer
Bäck, H. and M. Soininen
(1998)
Den längsta ronden
Alsterlund, Edna
(2010)
Edna Alsterlund träffar Ingemar Johansson första gången i USA, 1979. Trots åldersskillnaden, sexton år, finner de varandra. Hon upptäcker att boxningslegenden är en varm, godhjärtad och allmänbildad person med aptit på livet. Som reporter för bildtidningen Se umgås Edna bland artister, politiker, idrottsstjärnor, företagsledare och andra kända och intressanta personer. I USA är Ingemar ständigt efterfrågad i olika sammanhang, som idrottsevenemang och välgörenhetsgalor. Under de följande åren kommer paret att tillsammans delta intensivt i ett internationellt jetset-liv över hela världen.
Efter femton goda år tillsammans börjar Edna oroas av förändringar i Ingemars personlighet. Han får humörsvängningar, kör vilse och hittar inte hem. Beter sig bisarrt och blir fixerad vid alkohol. Till slut får Edna klarhet. Ingemar har drabbats av Alzheimers sjukdom. Och han saknar själv all sjukdomsinsikt.
Den längsta ronden är en bok om att vårda en anhörig som drabbats av Alzheimers sjukdom, ofta kallad "de anhörigas sjukdom". Författaren skriver öppenhjärtigt men också med stor respekt och kärlek om hur tillvaron blir en kamp för att få livet att fungera, hur hon försöker tillgodose Ingemars behov och samtidigt på olika sätt skydda honom mot omgivningens alltmer intensiva spekulationer. Edna har skrivit den bok hon själv letade efter då hon insåg att Ingemar drabbats av förtidig demenssjukdom. Hon belyser anhörigvårdarens svåra och utsatta situation. I boken medverkar också flera kända experter, bland andra grundaren av Stiftelsen Silviahemmet, professor emeritus Barbro Beck-Friis.
Den nya socialtjänstlagen
Bergstrand, B. O.
(2008)
Den orättvisa hälsan
Rostila, M., & Toivanen, S.
(2012)
I vilken utsträckning är hälsan ojämlikt fördelad i Sverige och i övriga världen? Varför lever människor med högre social position längre än andra? Hur kan hälsan fördelas mer rättvist?
Dessa är några av de frågor som denna unika svenska bok önskar besvara och klargöra. Boken handlar om hur människors position i samhällets hierarkiska strukturer är nära förknippad med systematiska skillnader i hälsa. Var vi råkar födas i världen, men även den sociala position vi har i ett givet samhälle, har stor betydelse för vår hälsa och livslängd. Trots att en jämlik hälsa borde vara en mänsklig rättighet har hälsans ojämlika fördelning ofta stått långt ned på den politiska dagordningen.
Den orättvisa hälsan är en lärobok som samlar det breda forskningsfältet kring social ojämlikhet i hälsa och förklarar dess teorier, begrepp och metoder. Boken tar upp dagsaktuella frågor om hälsans sociala villkor och ger förslag på möjliga åtgärder för att minska ojämlikhet i hälsa i befolkningen utifrån de sociala bestämningsfaktorerna för hälsa.
Boken vänder sig till studerande inom samhällsvetenskapliga ämnen, vård och medicin samt andra som vill fördjupa sig i ojämlikhet i hälsa. Den lämpar sig också för verksamma inom folkhälsoområdet och för politiker.
Den palliativa slutenvården i Sverige – en kartläggning av organisation, värdegrund, behov och närståendestöd. (C-uppsats)
Hallquist, E., & Einarsson, K.
(2009)
Den svenska psykiatrireformen. Bland brukare, eldsjälar och byråkrater
Markström, U.
(2003)
Människor med ett psykiskt funktionshinder ska ha samma möjlighet till gemenskap och delaktighet som andra. Den målsättningen var grunden för den svenska psykiatrireformen som trädde i kraft 1995.
De psykiskt funktionshindrades livssituation skulle förbättras med hjälp av effektivare insatser och tydligare ansvarsfördelning mellan kommuner och landsting.
Det blev en omdebatterad reform. Kritikerna menar att de psykiskt funktionshindrade riskerar att överges eller hänvisas till en socialtjänst utan nödvändig kunskap.
Förespråkarna hävdar tvärt om att utvecklingen är nödvändig för att kunna integrera de psykiskt funktionshindrade i samhället.
I denna bok studeras planeringen och genomförandet av psykiatrireformen samt den historiska utvecklingen på psykiatriområdet, från de stora mentalsjukhusen till dagens situation. Utvecklingen av nya synsätt och arbetsmetoder granskas, liksom den politiska processen bakom psykiatrireformens tillkomst.
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Den tatuerade mamman
Jaquelin Wilson
(2003)
Dolphin och Star älskar sin mamma Marigold. Hon är rolig, äventyrlig och påhittig - och täckt från topp till tå med tatueringar. Flickorna tycker att de har världens bästa mamma. Om hon bara inte vore så oberäknelig, opålitlig och sällan fanns där för dem. Marigold festar mycket och lever sitt liv som hon gjorde under hippie-tiden. Men ibland går hon in i djupa depressioner. Hon är inte någon exemplarisk mamma och kanske inte heller rätt person att ha ansvar för två unga flickor?
Den traumatiserade flyktingfamiljen i behandling.
Hjern, A., Pålsson, J., & Ryman Envall, K.
(1995)
Denna bok ger grundläggande kunskap om psykisk traumatisering och flyktingars psykosociala situation i exil. Erfarenheter av behandling inom olika grenar av vård och socialtjänst med många illustrerande fallbeskrivningar ges stort utrymme i boken. Särskilda avsnitt ägnas rättsmedicinsk dokumentation, psykosomatik, tolkanvändning, flyktingkvinnor, sjukgymnastik, gruppterapi, familjeterapi, bildterapi, sluten psykiatrisk vård, frivilligarbete, tandvård, primärvård och förläggningssjukvård. Boken vänder sig till personal inom vården, socialtjänsten och frivilligorganisationerna som möter flyktingar i sitt arbete.
Den traumatiserade flyktingfamiljen i behandling
Hjern, A., Pålsson, J., & Ryman Envall, K.
(1995)
Denna bok ger grundläggande kunskap om psykisk traumatisering och flyktingars psykosociala situation i exil. Erfarenheter av behandling inom olika grenar av vård och socialtjänst med många illustrerande fallbeskrivningar ges stort utrymme i boken. Särskilda avsnitt ägnas rättsmedicinsk dokumentation, psykosomatik, tolkanvändning, flyktingkvinnor, sjukgymnastik, gruppterapi, familjeterapi, bildterapi, sluten psykiatrisk vård, frivilligarbete, tandvård, primärvård och förläggningssjukvård. Boken vänder sig till personal inom vården, socialtjänsten och frivilligorganisationerna som möter flyktingar i sitt arbete.
Depression - en vanlig sjukdom symtom orsaker och behandlingsmöjligheter
Wasserman, Danuta
(2000)
Depression - en vanlig sjukdom är en grundlig, saklig och lättillgänglig bok den sjukdom som drabbar alltfler människor under något skede i livet. Boken är indelad i tre huvudavsnitt: symtom, orsaker och behandling.
Författaren tar upp hur sjukdomen depression skiljer sig från den helt naturliga nedstämdhet som kan drabba alla då och då. Vidare behandlas ett antal specialteman - t ex årstidsbundna depressioner, förhållandet mellan kön och depressionsbenägenhet, äldre och depression, depression vid missbruk, ätstörningar och sömnproblem.
I avsnittet om orsaker redogörs för olika teorier, både biologiska, sociala och psykologiska förklaringsmodeller, som söker förklara depressionens uppkomst. Boken avslutas med ett omfattande avsnitt om olika aktuella behandlingsvägar. Författaren tar också upp hur man kan hjälpa sig själv vid nedstämdhet samt ger råd till anhöriga. Ett varsamt skrivet sista kapitel behandlar självmord och självmordsförsök i samband med depression.
När Depression - en vanlig sjukdom utkom första gången 1998 blev den mycket uppskattad för det direkta och lättillgängliga tilltalet och den stora respekt för de drabbade som genomsyrar texten. Flera anmälare betonade att boken vänder sig till både yrkesfolk inom vården och till "vanliga" människor - den beskrevs som en verklig bok för alla.
depression and caregiver attitudes: Results from the aged in home care study.
Soldato, M., Liperoti, R., Landi, F., Carpenter, I. G., Bernabei, R., & Onder, G.
(2008)
Depression and grief
Moore, M. & Carr, A.
(2000)
Depression and loss
Brown, G. W., Harris, T., & Copeland, J. R.
(1971)
Recent losses occurring in the two years before onset of depression in women are distinguished from past losses occurring at any time before this. Of past losses only loss of mother before II is associated with greater risk of depression--both among women treated by psychiatrists and among women found to be suffering from depression in a random sample of 458 women living in London. Past loss of a father or sibling before 17 (or a mother between II and 17), or a child or husband, is not associated with a greater chance of developing depression. However, among patients all types of past loss by death are associated with psychotic-like depressive symptoms (and their severity) and other types of past loss with neurotic-type depressive symptoms (and their severity). It is argued that these associations probably reflect direct causal links, and a sociopsychological theory to explain them is discussed.
Depression and loss: The effects of a short term bereavement support group for children and families
Carver, E.A.
(2000)
Depression and Quality of Informal Care: A Longitudinal Investigation of Caregiving Stressors
Smith GR, Williamson GM, Miller LS, Schulz R.
(2011)
This research examined longitudinal associations between caregiving stressors, caregiver depression, and quality of care. Informal caregivers of elderly care recipients were interviewed at baseline (N = 310) and again one year later (N = 213). Hierarchical regression analyses indicated that increases in caregiving stressors (i.e., caregiver physical health symptoms, caregiver activity restriction, and care recipient controlling and manipulative behavior) were related to increased caregiver depression. In turn, increased caregiver depression and decreased caregiver respectful behavior predicted increases in potentially harmful behavior. These results extend previous cross-sectional findings and indicate that changes in caregiving stressors, caregiver depression, and caregiver respect over time may signal that intervention is warranted in order to forestall or prevent poor quality of care.
Depression care need among low-income older adults: views from aging service providers and family caregiver
Choi NG, Kimbell K.
(2009)
This study reports findings from focus group discussions with aging service providers and family caregivers about low-income ambulatory or homebound older adults' depressive symptoms and barriers to seeking treatment. It also reports the participants' suggestions about interventions for depression that can be integrated into existing aging service settings or implemented in older adults' homes, as well as the type of training the aging service providers need if they are to provide services for depression. Participants identified social isolation, loneliness, and loss and grief as major correlates of depression in older adults. Barriers to seeking treatment included older adults' denial of or lack of understanding about depression, a sense of stigma, financial worries, and lack of mobility. Suggested depression treatments included brief cognitive behavioral interventions, friendly visitors, and physical exercise. Bachelor's-level service providers expressed their need and desire for training in mental health assessment and brief psychotherapy.
Depression in children and adolescents two months after the death of a parent
Gray, L.B., Weller, R.A., Fristad, M. & Weller, E.B.
(2011)
BACKGROUND:
This study examined depressive symptoms in bereaved children and adolescents two months after the death of a parent.
METHODS:
Participants were 325 children and adolescents bereaved of a parent approximately two months prior to the study. They were compared to 129 non-bereaved community controls and 110 non-bereaved depressed controls. Participants and their parents were interviewed regarding the child's depressive symptoms. Possible moderating factors for depression in bereaved children were examined.
RESULTS:
25% of the bereaved participants experienced a major depressive episode (MDE) compared to 1% of the community controls. An additional 24% of the bereaved participants experienced a sub-syndromal depressive episode, defined as 3 or 4 depressive symptoms, compared to 4% of the community controls. Factors correlated with occurrence of MDE in the bereaved children in exploratory analyses were (1) history of MDE in the child and (2) history of alcoholism in a parent. Guilt/worthlessness, psychomotor disturbance, and low energy in the context of an MDE predicted membership in the depressed control group over the bereaved group.
LIMITATIONS:
The relationship between an MDE in the bereaved child and parent history of alcoholism is exploratory, as the p-value for this correlation was greater than the α adjusted for multiple comparisons. The bereaved child's history of MDE was based on the child's and parent's memories of depressive symptoms.
CONCLUSIONS:
The death of a parent is a risk factor for depressive symptoms and depressive episodes in children and adolescents two months after the death.
Depression in men in the postnatal period and later child psychopathology: a population cohort study
Ramchandani, P.G., Stein, A., O’Connor, T.G., Heron, J., Murray, L. & Evans, J.
(2008)
OBJECTIVE:
Postnatal depression in women is associated with adverse effects on both maternal health and children's development. It is unclear whether depression in men at this time poses comparable risks. The present study set out to assess the association between depression in men in the postnatal period and later psychiatric disorders in their children and to investigate predisposing factors for depression in men following childbirth.
METHOD:
A population-based cohort of 10,975 fathers and their children from the Avon Longitudinal Study of Parents and Children (ALSPAC) was recruited in the prenatal period and followed for 7 years. Paternal depressive symptoms were assessed with the Edinburgh Postnatal Depression Scale and later child psychiatric disorder (DSM-IV) with the Development and Well-Being Assessment.
RESULTS:
Depression in fathers in the postnatal period was significantly associated with psychiatric disorder in their children 7 years later (adjusted OR 1.72, 95% CI 1.07-2.77), most notably oppositional defiant/conduct disorders (adjusted OR 1.94, 95% CI 1.04-3.61), after adjusting for maternal depression and paternal educational level. A history of severe depression and high prenatal symptom scores for depression and anxiety were the strongest predictors of paternal depression in the postnatal period.
CONCLUSIONS:
Depression in fathers in the postnatal period is associated with later psychiatric disorders in their children, independently of maternal postnatal depression. Further research into the risks associated with paternal psychopathology is required because this could represent an important opportunity for public health intervention.
Depression in men in the postnatal period and later child psychopathology: a population cohort study
Ramchandani, P.G., Stein, A., O’Connor, T.G., Heron, J., Murray, L. & Evans, J.
(2008)
OBJECTIVE:
Postnatal depression in women is associated with adverse effects on both maternal health and children's development. It is unclear whether depression in men at this time poses comparable risks. The present study set out to assess the association between depression in men in the postnatal period and later psychiatric disorders in their children and to investigate predisposing factors for depression in men following childbirth.
METHOD:
A population-based cohort of 10,975 fathers and their children from the Avon Longitudinal Study of Parents and Children (ALSPAC) was recruited in the prenatal period and followed for 7 years. Paternal depressive symptoms were assessed with the Edinburgh Postnatal Depression Scale and later child psychiatric disorder (DSM-IV) with the Development and Well-Being Assessment.
RESULTS:
Depression in fathers in the postnatal period was significantly associated with psychiatric disorder in their children 7 years later (adjusted OR 1.72, 95% CI 1.07-2.77), most notably oppositional defiant/conduct disorders (adjusted OR 1.94, 95% CI 1.04-3.61), after adjusting for maternal depression and paternal educational level. A history of severe depression and high prenatal symptom scores for depression and anxiety were the strongest predictors of paternal depression in the postnatal period.
CONCLUSIONS:
Depression in fathers in the postnatal period is associated with later psychiatric disorders in their children, independently of maternal postnatal depression. Further research into the risks associated with paternal psychopathology is required because this could represent an important opportunity for public health intervention.
Depression in Parents, Parenting and Children
National Research Council and Institute of Medicin.
(2009)
Research Challenges in Confronting Depression in Parents
The challenges for researchers, clinicians, and policy makers in attempting to address the problems associated with the care of depression in parents include the integration of knowledge, the application of a developmental framework, conceptualizing the problems in a two-generation nature, and acknowledging the presence of the constellation of risk factors, context, and correlates associated with depression.
Issues Considered in Searching the Literature
To fully understand the linkages among depression, parenting, and the child health outcomes, researchers should consider issues surrounding (but not limited to) the definition and measurement of depression and parenting, the etiology of depression, timing and use of appropriate screening interventions, the process of risk and resilience in children of depressed parents, correlates of depression, and developmental processes and time points.
Challenges in Evaluating the Literature
Researchers face multiple methodological challenges studying depression in parents and its effects on parenting practices and child health outcomes that need to be addressed in order to provide recommendations for the development of future research, interventions, and policy—including conceptual frameworks, sampling designs, data analysis, and integration of research findings across literatures.
In this chapter, the committee describes their approach to the literature on the effects of parental depression on parenting practices and child outcomes and its evaluation. The chapter is organized in three sections, relating to the challenges that researchers face in confronting the problem of parental depression, the wide range of issues that we considered relevant, and standards of evidence and methodological issues that are important to keep in mind in reading this report. Some topics are addressed in more than one section, but they are focused on different aspects of the topic. For example, in the section on research challenges, we show that a conceptual framework relating to the effects of parental depression on families should be guided by a developmental psychopathology perspective. Later, in the section on research standards, we mention what the literature has shown in this regard and that research relating to any psychopathology should address questions "across generations and across time" (Hinshaw, 2008).
The type of evidence and criteria used to judge the importance of that evidence vary from area to area. This chapter does not attempt to explicitly summarize the specific criteria used for the evaluation of the evidence in each area, but instead offers a guideline of the general areas of interest and inquiry that the committee used when the committee searched and evaluated the literature. For example, studies of screening for parental depression are different from studies of treatment and intervention, and these are different from studies of prevention programs. These are also different from inquiries relating to changes in policy at the macro level or the available studies on the effects of parental depression. Thus, in this overview on standards of evidence and methodology, we present general guidelines that the reader should apply when appropriate in the subsequent chapters. Recommendations based on the evaluation of the evidence in each area are presented.
Depression in the oldest old in urban and rural municipalities
Bergdahl, E., Allard, P., Lundman, B., & Gustafsson, Y.
(2007)
Introduction: The aim was to compare an urban and a rural old population regarding depression. Method: A population-based, cross-sectional study in five depopulated areas and one expanding urban city in northern Sweden. Participants aged 85 and above were evaluated for depression. Data were collected from structured interviews and assessments and from relatives, caregivers and medical charts. Depression was screened for using the Geriatric Depression Scale-15 (GDS-15) and evaluated by the Montgomery-Åsberg Depression Rating Scale (MADRS). Results: In total, 29% of the 363 participants were depressed (34% in the rural municipality and 27% in the urban municipality). Fifty-one percent versus 69% were receiving treatment with antidepressants. In the rural areas, those with depression were less frequently treated with selective serotonin reuptake inhibitor (SSRI) medications (36% versus 65%; p = 0.004), instead there were participants treated with Tri Cyclic Antidepressant's (TCA's) (10%, versus 0%; p = 0.0018). A larger proportion of the participants in the urban sample had responded to treatment (59% versus 27%; p = 0.175). Conclusion: Depression in old age appears to be a common cause of emotional suffering among the oldest old. In the rural areas, depression was more often inadequately treated and it was also treated with inappropriate medications.
Depressive disorders in caregivers of dementia patients: A systematic review
Cuijpers, P.
(2005)
This study examines plans for future caregiving made by family members of younger (n =59) and older adults (n =16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.
Depressive symptoms, social support and personal health behaviors in young men and women
Allgower, A., Wardle, J., & Steptoes, A.
(2001)
Abstract
This study investigated the relationship of depressive symptoms, social support, and a range of personal health behaviors in 2,091 male and 3,438 female university students from 16 countries. Depressive symptoms and social support were measured using the short Beck Depression Inventory and the Social Support Questionnaire; 9 personal health behaviors were also assessed. After the authors took age, social support, and clustering by country into account, depressive symptoms were significantly associated with lack of physical activity, not eating breakfast, irregular sleep hours, and not using a seat belt in both men and women, and additionally with smoking, not eating fruit, and not using sunscreen among women. Low social support was independently associated with low alcohol consumption, lack of physical activity, irregular sleep hours, and not using a seat belt in men and women. Bidirectional causal pathways are likely to link health behaviors with depressed mood.
Depressive symptoms, social support, and personal health behaviors in young men and women
Allgower A, Wardle J, Steptoe A.
(2001)
This study investigated the relationship of depressive symptoms, social support, and a range of personal health behaviors in 2,091 male and 3,438 female university students from 16 countries. Depressive symptoms and social support were measured using the short Beck Depression Inventory and the Social Support Questionnaire; 9 personal health behaviors were also assessed. After the authors took age, social support, and clustering by country into account, depressive symptoms were significantly associated with lack of physical activity, not eating breakfast, irregular sleep hours, and not using a seat belt in both men and women, and additionally with smoking, not eating fruit, and not using sunscreen among women. Low social support was independently associated with low alcohol consumption, lack of physical activity, irregular sleep hours, and not using a seat belt in men and women. Bidirectional causal pathways are likely to link health behaviors with depressed mood.
Descriptions of children's needs and parenthood among mothers with intellectual disability
Starke, M.
(2011)
This study looks at how mothers with an intellectual disability describe their children's needs, their own parenting and parenthood, and their encounters with professionals providing them with help and support. The analysis draws upon a relational perspective on disability, theories of modern parenthood, and the concept of the sense of coherence in examining the strategies used by the interviewed mothers in their everyday lives, such as consulting people they trust. Having a child and being entrusted with the role of parenthood were described by the interviewed mothers as creating meaningfulness in their lives, while the comprehensibility of their everyday lives was often found to be lacking and the information given them by professionals not always understandable. Better information and communication thus seem to be necessary to render these mothers' parenthood and its context more comprehensible.
Design of a Web-based individual coping and alcohol-intervention program (web-ICAIP) for children of parents with alcohol problems: study protocol for a randomized controlled trial
Elgan, T. H., Hansson, H., Zetterlind, U., Kartengren, N., & Leifman, H.
(2012)
Background
It has been estimated that approximately 20% of all Swedish children grow up with parents having alcohol problems, which may result in negative outcomes among these children. Therefore, most Swedish municipalities provide resources for support, but at the same time figures reveal that not even 2% receive support, mainly due to difficulties in identifying and recruiting these children into support programs. Delivering intervention programs to children and adolescents via the Internet seems a promising strategy, but to date, the number of web-based interventions aimed at this target group is very scarce. We have therefore developed a novel internet-delivered therapist assisted self-management intervention called the web-ICAIP (Individual Coping and Alcohol Intervention Program) for adolescents having parents with alcohol problems. The purpose of the program is to strengthen adolescents' coping behavior, improve their mental health, and postponing the onset or decreasing risky alcohol consumption. This paper describes the web-ICAIP and the design of a randomized controlled trial (RCT) to measure the efficacy of this intervention.
Methods/Design
The RCT will include at least 183 adolescents (15-19 year old) who will be randomly allocated to two conditions where one group has access to the web-ICAIP and the other is a waiting list control group. Participants will be recruited from websites containing information and facts for adolescents about alcohol and other drugs. Possible participants will be screened using the short version of the Children of Alcoholics Screening Test (CAST-6). The assessment consists of a baseline and two follow-up measurements taking place after two and six months, respectively. The primary outcomes include the Center for Epidemiological Studies Depression Scale (CES-DC), a coping behavior scale, and also the short version of the Alcohol Use Disorders Identification Test (AUDIT-C). Additional outcomes include the "Ladder of life" which measures overall life satisfaction and questions concerning program adherence.
Discussion
There is an urgent need for developing and evaluating web-based intervention programs which target children having parents with alcohol problems. This study will therefore make an important contribution to this novel field of research.
Design of an internet-based health economic evaluation of a preventive group-intervention for children of parents with mental illness or substance use disorders
Woolderink, M., Smit, F., van der Zanden, R., Beecham, J., Knapp, M., Paulus, A., & Evers, S.
(2010)
Background
Preventive interventions are developed for children of parents with mental and substance use disorders (COPMI), because these children have a higher risk of developing a psychological or behavioral disorder in the future. Mental health and substance use disorders contribute significantly to the global burden of disease. Although the exact number of parents with a mental illness is unclear, the subject of mentally ill parents is gaining attention. Moreover there is a lack of interventions for COPMI-children, as well of (cost-) effectiveness studies evaluating COPMI interventions. Innovative interventions such as e-health provide a new field for exploration. There is no knowledge about the opportunities for using the internet to prevent problems in children at risk. In the current study we will focus on the (cost-) effectiveness of an online health prevention program for COPMI-children.
Methods/Design
We designed a randomized controlled trial to examine the (cost-) effectiveness of the Kopstoring intervention. Kopstoring is an online intervention for COPMI-children to strengthen their coping skills and prevent behavioral and psychological problems. We will compare the Kopstoring intervention with (waiting list) care as usual. This trial will be conducted entirely over the internet. An economic evaluation, from a societal perspective will be conducted, to examine the trial's cost-effectiveness. Power calculations show that 214 participants are needed, aged 16-25. Possible participants will be recruited via media announcements and banners on the internet. After screening and completing informed consent procedures, participants will be randomized. The main outcome is internalizing and externalizing symptoms as measured by the Youth Self Report. For the economic evaluation, healthcare costs and costs outside the healthcare sector will be measured at the same time as the clinical measures, at baseline, 3, 6 and 9 months. An extended measure for the intervention group will be provided at 12 months, to examine the long-term effects. In addition, a process evaluation will be conducted.
Discussion
Recent developments, such as international conferences and policy discussions, show the pressing need to study the (cost-) effectiveness of interventions for vulnerable groups of children. This study will shed light on the (cost-) effectiveness of an online preventive intervention.
Designing online support for families living with depression
Stjernswärd, S.
(2009)
Families living with mental illness experience an added burden and may experience such psychological distress that they require therapeutic intervention. The Internet is used as a daily tool by a growing share of the population worldwide, including for health related matters. Its potential as a health care tool, including advantages and drawbacks, should be explored. The overall aim of the present thesis was to explore the relatives' experiences of living close to a person with depression and the Internet's potential to address their needs. Explorative qualitative research has been used to map the e-health field in relation to depression, to explore what the Internet offers the families living with depression, as well as the relatives' experiences of living with a person with depression. An iterative design process was used in the development of a digitally based tool aimed at supporting the relatives in their daily life with depression. Users' experiences of the tool were explored using qualitative explorative research. A vast array of different organizations and initiatives are represented within the e-health field. However, initiatives that are targeted and tailor-made for families living with depression are scarce. Research in the e-health field with focus on depression illuminates health seekers' and online community users' profiles, effects of online cognitive behavioral therapy (CBT), and a number of strengths (i.e. accessibility) and weaknesses (i.e. reliability) related to the Internet as a health care tool. Living close to a person with depression can strongly affect the private, social and professional areas of the relatives' daily life. A growing feeling of not living one's own life may arise, due to the difficulties of balancing relationships, a process of adaptation and re-evaluation of life circumstances, and a struggle to act as advocate and voice for the person with depression within the health care system and society. Relatives often come in contact with health professionals on 12 behalf of their ill kin and need information and support; needs that are rarely addressed by the health care system. A digitally based tool aimed at supporting the relatives in their daily life with depression was developed using an iterative design process. The tool's development was carried out in close cooperation with users with the help of focus groups and prototypes. Motivations and obstacles to using online self-help tools were illuminated. Privacy stood out as an important factor when developing online tools. The study resulted in a website, www.sommarregn.se, entailing an online diary (private and encrypted), including scales, and a forum (members only access), including an e-mail function. Users' experiences of the website over a 10 weeks test period were illuminated. The diary and forum appeared to fill a number of valuable functions, although a further development of the tool may enhance its usability, which was good. The tool promoted communication with the self and others. The Internet as a technology offered a number of advantages, such as convenience of use and perceived anonymity, and disadvantages, such as qualitative issues. The relatives' needs ought to be addressed in order to support them in a daily life with depression. Empowered relatives are in a better position to help their ill kin and support may prevent ill health in the relatives themselves, and subsequently additional costs to society. Health care professionals meet patients that are also online health seekers. Professionals must be aware of the advantages and drawbacks of e-health when meeting patients. In an economically pressured society, alternative support options have to be explored in order to address the needs of target groups at risk.
Det andra barnet. Föräldrars tankar kring sitt andra barn då deras första har ett funktionshinder
Wanker, Maria
(2006)
Bakgrund till studien är ett behov och ett intresse att belysa den situation och de dilemman
som föräldrar har att förhålla sig till då deras första barn har ett funktionshinder och de vill
ha fler barn. Mitt intresse väcktes i samband med att jag träffade nyblivna
förstagångsföräldrar till barn med funktionshinder i mitt arbete på en samtalsmottagning
för anhöriga. Syftet med undersökningen är att få vidgad kunskap om föräldrarnas tankar
och erfarenheter i samband med deras andra graviditet.
Studien bygger på intervjuer med föräldrar utifrån frågor om hur de tänkte kring beslutet
om ett barn till, om graviditeten, om möjligheterna till fosterdiagnostik, hur de upplevde
förlossningen och om hur det var att bli föräldrar igen.
Ur intervjumaterialet framstod ett flertal dilemman som föräldrarna hade att ta ställning
till. Dessa berörde existentiella och etiska frågor bl.a. kring människovärde och
funktionshinder och svåra beslut kring fosterdiagnostik och abort i början av processen.
Genom föräldrarnas berättelser går ett stråk av sorg och graviditeterna präglades av oro.
Oron tog sig olika utryck men för flera fanns den kvar länge trots att barnet bedömts som
friskt. Oron relaterade i hög grad till hur det första barnets funktionshinder uppkommit
och gestaltade sig.
Att få ett friskt barn var för alla intervjuade en stor glädje och en revolutionerande
erfarenhet. Den innebar först och främst vetskapen om att det kunde gå bra. Den innebar
också att deras identitet som föräldrar kunde stärkas och relationerna till omvärlden
normaliseras.
Ett kvarstående dilemma för föräldrarna idag är deras kamp att få det stöd de behöver för
att hinna och orka med sina barn och ändå leva så normalt som möjligt. Ett annat dilemma
som alla de intervjuade delar är hur de ska kunna ge det andra barnet möjlighet att
utvecklas fritt och normalt, samtidigt som de hoppas att det ska komma att känna ansvar
för sitt syskon.
Det barn vi fick
Bryhagen, Åsa
(2005)
Ett handikappat barn - inte ett friskt eller välskapt. Vi drabbas av livet, förs in i en kris som innebär en helt annan kamp och oro än vi tänkt oss. Våra fasader och masker faller och vi förs till våra djupaste frågor.
Ur det brustna växer något nytt, ömtåligare och mänskligare.
Det barn vi fick är en personlig berättelse med vinklingar och funderingar kring ett annorlunda barn och handikapp, skola, samhälle, människosyn och människovärde.
Boken vänder sig till alla som är direkt berörda, Föräldrar, anhöriga, de som genom yrke eller engagemang möter dessa barn och vuxna.
Det började med en annons. Ersta Vändpunktens arbete med anhöriga till alkoholister
Runquist, Weddig
(1997)
Det ensamma ansvaret: Anhörigvårdare berättar: Projektet en berättelse
Anhörigcentrum
(2002)
Det finns någon därinne: om vård, värde och värderingar vid förvärvad hjärnskada
Carolusson, Susanna
(2002)
Hur är det att förlora en vuxen son, som överlever till ett nytt och annorlunda liv med en svår hjärnskada? Kan vårdpersonal, personliga assistenter, pedagoger och anhöriga lära sig att uppskatta det unika hos varje patient, klient, kund, brukare och närstående? Patient, klient, kund, brukare, handikappad, funktionshindrad ... Alla dessa försök att hitta en värdig etikett på den som är beroende av stöd avslöjar ett mycket större, outtalat problem med vår attityd och vår rädsla för det annorlunda. Tobias cyklade omkull och slog sönder vänster hjärnhalva. Tobias mamma, författaren, berättar personligt om vården och bemötandet från och med det akuta omhändertagandet, genom intensivvård och rehabilitering till upprättandet av en vardag, en process på drygt fyra år. Närståendes och anhörigas reaktioner beskrivs ingående. Författaren lyckas förmedla att förtvivlan och ovisshet kan gå hand i hand med kraft, inspiration och hopp, trots förlustens skoningslösa konsekvenser. Personalens bemötande beskrivs också, men ur ett mer professionellt perspektiv, med såväl beröm, som kritik och konstruktiva förslag. Två perspektiv förmedlas: Hur föräldrarna blir traumatiserade, sårbara och reagerar på ett sätt som liknar perioden efter barnafödande, samt hur deras utsatthet och trevande försök att hantera läget, ständigt avbryts för en nödvändig kamp mot snäva perspektiv hos personer i beslutsfattande position. Det andra perspektivet är professionellt; läsaren inspireras att reflektera, de personliga exemplen blir material att fundera över ur ett generellt bemötandeperspektiv: Vilka värden och värderingar möter vi hos oss själva och andra, när en medmänniska förlorar så mycket av allt det som format hans/hennes identitet och vår relation? Boken fyller en lucka i vård-, psykologi- och omsorgsprogram. Personal får inspiration i arbetet. Anhöriga och drabbade känner igen sig och upplever ett stort stöd i denna berättelse, som är lika aktuell idag 2012 som då första utgåvan publicerades
Det glemte folk. Livsformer og centraldirigering
Højrup, T.
(1983)
Det goda boendet : En kvalitativ studie av anhörigas upplevelse av kontaktmannaskap och individuell målplan. Kandidatuppsats.
Andersson, A., Medborg, P
(2008)
Det handikappade barnet i vuxenvärlden. Om möjligheterna att mötas
Högberg, Britta
(1996)
Det handlar också om tid och pengar: Anhörigomsorg, försörjning, lagar
Sand Ann-Britt
(2014)
Kunskapsöversikten syftar till att skapa en överblick över relevant forskning och utveckling inom området anhörigomsorgens konsekvenser för försörjning och ekonomi, samt att bidra till att stimulera och stödja utvecklingsarbete inom detta område. Målgruppen för kunskapsöversikten, lliksom för Nka:s arbete i övrigt, är anhöriga oah deras närstående, anställda inom vård och omsorg samt inom hälso- och sjukvård, beslutsfattare inom området, aktiva inom idéburna organisationer, studenter, lärare och forskare.
Det kognitiva samtalet i vården
D´Elia
(2004)
Det nya samhällskontraktet
Olsson, O.
(2013)
Det outsagda och ohörsammade lidandet: tillvaron för personer med långvarig psykossjukdom och deras närstående.
Syrén, S.
(2010)
Syrén, Susanne (2010). Det outsagda och ohörsammade lidandet. Tillvaron för personer med långvarig psykossjukdom och deras närstående (Being in the world with long term psychotic illness – the unspoken and unheard suffering), Linnaeus University Dissertations No 6/2010. ISBN: 978-91-86491-07-9. Written in Swedish with a summary in English.Aim: The overall aim of the thesis was to describe the lived experience of being in the world with long term psychotic illness. This is described from three perspectives; the perspective of persons diagnosed with long term psychotic disorder; the perspective of their relatives; and a family perspective. Method: Three studies were conducted guided by a reflective lifeworld approach grounded in phenomenology. The data were generated through individual, group, and family interviews. Data were analyzed for essential meanings of being in the world. Results: Persons with long term psychotic illness live in a borderland of paradoxes between the usual and unusual. For the ill persons the existence is incomprehensible and defenceless with feelings of not being at home in the body and in the world. They search for themselves in a care context that is contradictory, simultaneously good and hostile. These experiences are mostly unspoken, a struggle with doubts about having health or illness, what is good or evil, and about being usual or unusual. The relatives exist in a dilemma of the possible and impossible, a continual infinite struggle. Co-existing with their ill family member is a communion and a longing for togetherness is prominent. Relatives struggle with responsibilities for themselves and for their ill family member. In these unheard struggles the relatives yearn for participation in the formal care context. Family interviews with persons with long term psychotic illness and their relatives revealed a co-existence hovering between chaos and boredom while striving for a peaceful and quiet life. Thefamilies search for constancy and predictability in the presence of incomprehensible and threatening dangers. The experience of being a We balances the unshared meanings of being in the world and the loss of being able to experience and do things together. The experience of being a We keeps their individual existence and co- existence from falling apart.Conclusion: Persons with long term psychotic illness and their relatives have to withstand extensive existential suffering, which is unspoken and unheard. Formal caring should be existential caring, supporting the ill person's comprehensibility and understanding of life, and feelings and experiences of being at home. Further, relatives should be acknowledged both as persons and carers and invited to participate in formal care. These results also point to the importance of strengthening feelings of togetherness and of being a We through systemic oriented existential conversations, where the ill person, their relative and a formal carer converse together.
Det slutar inte vid 65. En rapport om äldre våldsutsatta kvinnor
Länsstyrelsen i Stockholm
(2012)
Kunskapen om våld mot äldre kvinnor är mycket begränsad. Som ett led i att åtgärda bristerna genomförde Länsstyrelsen i Stockholms län under våren och hösten 2011 en utbildning i tre steg för drygt 500 personer verksamma inom äldreomsorgen i länet. I denna rapport beskrivs de resultat och synpunkter som framkommit efter utbildningssatsningen.
Det späda barnet som anhörig
Stiftelsen Almänna Barnhuset
(2010)
Rapporten innehåller bl.a. en forskningsöversikt över vad vi idag vet om tidig intervention, behandling och tvärfackligt samarbete när det gäller psykisk ohälsa/sjukdom hos mammor under graviditeten och efter förlossning. Forskning visar att för denna grupp har selektiv prevention visat sig effektiv och betydelsefull.
Det saknas idag stöd till de mest behövande spädbarnsfamiljerna och det finns en tydlig lucka i vårdkedjan. Organisationen för stöd till föräldraskapet och "relationen" mellan föräldern och det späda barnet behöver få en form inom svensk hälsovård. Ett flertal spädbarnsverksamheter har lagts ner i landet och det finns stora brister i tillgången på samspelsbehandling, där föräldrar med svårigheter i föräldraskapet kan få hjälp och stöd att reglera samspelet.
Vi hoppas och tror att denna rapport kan vara ett bra stöd i det fortsatta viktiga arbetet att samverka för att stödja det späda barnet som anhörig till en förälder med psykisk sjukdom. Detta blir än mer angeläget utifrån den nya lagstiftningen i HSL och LYHS.
Det var så mycket jag inte förstod. En intervjuundersökning med vuxna barn till psykiskt sjuka föräldrar
Granath, Kristina
(1997)
Det är bara att kämpa på. Barns upplevelse av habilitering, skola och fritid, samt kommentarer från föräldrar: Teknik, Kommunikation Handikapp, rapport 34
Bernehäll Claesson, I.
(2003)
Syftet med denna rapport är att belysa hur barn med cerebral pares mellan
tio och sjutton år upplever sina möjligheter att påverka stödinsatser och
behandlingsmetoder som de erhåller från olika institutioner samt att öka
kunskaperna om deras unika situation. Det innebär att intresset fokuserar på
barnens upplevelser och erfarenheter av habilitering, skola och fritid. Dessa
barns vardag skiljer sig i många avseenden från andra barns vardag.
Metoden som använts är intervjuer med barnen men jag har även talat med
föräldrarna. Med hjälp av barnhabiliteringen vid Kärnsjukhuset i Skövde,
Handikappförvaltningen i Järfälla kommun samt Mullback Institutet i
Karlsborg, har jag fått kontakt med familjerna. De har tillfrågat familjerna
om intresse att delta. De flesta intervjuer har genomförts i barnens hem, en
på ett fritidshem samt två på Mullback Institutet.
Resultatet visade att barnen är relativt nöjda och tycker det mesta fungerar
bra. Det som ibland är problem är kamratkontakterna i skolan och på
fritiden. Många barn känner sig ensamma och isolerade. Föräldrarna anser
att deras barn är i behov av mer träning via habiliteringen och betonar att
kamratkontakterna är ett större problem än vad barnen ibland vill erkänna.
Det är en trygghet att veta att möjligheten finns”. En studie om anhörigvårdares nyttjande av stödformen avlösning i hemmet
Karlsson, E.
(2011)
Det är mitt hem. Vägledning om boende och boendestöd för personer med psykisk funktionsnedsättning
Socialstyrelsen
(2010)
Vägledningen ger läsaren en historisk tillbakablick för att förstå nutiden och en presentation av viktiga aspekter som gäller de personer som är mottagare av boende- och boendestödsinsatser. Här beskrivs utvecklingen av boende- och boendestödsverksamheterna sedan psykiatrireformen. Det ges också en definition av vad ett hem är, hemmets betydelse för personen och den etiska plattformen som dessa verksamheter ska bygga på. Sedan behandlas målgruppen med fokus på heterogenitet och de skillnader som beror på ålder och diagnos. Dessutom presenteras målgruppens behov av stöd och service samt önskemål om var och hur man vill bo.
Kommunens mål- och planeringsarbete
Nästa del tar upp kommunens mål- och planeringsarbete för boendeverksamheter på ett övergripande plan och vänder sig steg främst till personer som arbetar med kommunal verksamhetsledning och enhetschefer. Här fokuseras innehållet på lagstiftning, tillsynsresultat samt villkor och redskap för verksamheten. Texten innehåller förslag på åtgärder som kan underlätta kommunernas arbete.
Rapporten ger också viktig bakgrundsinformation till främst enhetschefer och boendestödjare om hur man kan tänka kring bostäder. Här diskuteras aspekter som fullvärdig bostad, institutionell prägel, fysisk och psykosocial miljö samt vad som kännetecknar en god boendemiljö.
Utredningsmomentet och standardiserade bedömningsinstrument
Vägledningen innehålle också information om ansökan, biståndsbedömning och beslut när någon ansöker om insatser, information som främst vänder sig till biståndsbedömare och boendestödjare. Socialstyrelsen har tidigare publicerat en handbok om handläggning och dokumentation, här fokuseras på utredningsmomentet och användningen av standardiserade bedömningsinstrument. Dessutom betonas att behovsbedömningar är en kontinuerlig process eftersom en individs behov förändras.
Typer av boendestöd och hur arbetet kan utföras
Informationen om viktiga typer av stöd som förekommer i boendeverksamheter – psykosocialt boendestöd, stöd för att förebygga fysisk ohälsa och förbättra fysisk hälsa samt kognitiva hjälpmedel för personer med psykisk funktionsnedsättning vänder sig främst till boendestödjare. Först behandlas boendestöd som funktion, vem som arbetar med stödet samt vad man kan tänka på när man arbeta i någon annans hem. Kärnan är ny forskning som består av intervjuer med boende om hur de vill att boendestödet ska ges.
I kapitel 9 ges exempel på kognitiva funktionsnedsättningar som komplicerar vardagslivet, en del kognitiva hjälpmedel samt vad man kan tänka på när de ska användas.
Boendestöd utifrån ett folkhälsoperspektiv
Målgruppens fysiska hälsa har visat sig vara ett mycket eftersatt område och i sjunde kapitlet presenteras forskning som jämför målgruppen med befolkningen i övrigt. Texten har ett folkhälsoperspektiv och kan stimulera till insatser i ett boendesammanhang för att förebygga fysisk ohälsa och förbättra gruppens fysiska hälsa. Hälso- och sjukvård i permanenta boenden
Den del av rapporten som tar upp ansvarsfrågor när det gäller hälso- och sjukvården i olika permanenta boenden vänder sig främst till ledningsnivån, enhetschefer och medicinskt ansvariga.
Barns rätt som anhöriga: en antologi om att göra barn delaktiga
Stiftelsen Allmänna barnhuset
(2019)
illustration: Tomas Gradzki.
innehåller fördjupande artiklar som berör ämnesområdet och starten av utvecklingsarbetet BRA, Barns Rätt som Anhöriga
Barns strategier och ekonomisk utsatthet: knappa resurser som utgångspunkt för en förhandling av positionerna i familjen
Fernqvist, S.
(2012)
Barns vardagsliv i familjehem
Andersson, G.
(2001)
BarnsBeste Journalinnsyn ”Barn som pårørende”
Havåg, E.B., & BarnsBeste
(2013)
Barriers and contributors to minority older adults' access to mental health treatment: perceptions of geriatric mental health clinicians
Choi, N. G. and J. M. Gonzalez
(2005)
This exploratory study examined geriatric mental health clinicians' experiences and perceptions of the circumstances in which African American and Mexican American older adults access outpatient specialty mental health treatment and the factors that impede or facilitate such access. Eighteen mental health clinicians from three outpatient geriatric mental health clinics in one urban and two rural areas in central Texas discussed their perceptions in three focus groups and/or individual interviews conducted by the authors. The clinicians identified the common circumstances in which minority older adults' access to mental health treatment involves loss and grief in later life coupled with lack of informal social support. Although clinicians confirmed existence of the access barriers identified by previous studies (lack of understanding about mental disorders, shame and stigma, cultural differences, fear and distrust of the treatment system, primary care physicians' knowledge deficit about mental disorders, and financial and transportation barriers), they also identified minority older adults' lack of information on referral processes as a serious barrier. As access contributors, physician referral; support and encouragement from family, especially adult children; availability of bilingual/bicultural clinicians; and transportation were identified. Implications of the findings are also discussed.
Barriers to Treatment Participation Scale: evaluation and validation in the context of child outpatient treatment
Kazdin, A., Holland, L., Crowley, M., & Breton, S.
(1997)
This study examined barriers that families experience during treatment and the role these barriers play in participation and completion of therapy. We developed the Barriers to Treatment Participation Scale and evaluated performance among children (N = 260, ages 3-13) and families referred for outpatient treatment. The results indicated that: (a) the scale yielded high levels of internal consistency; (b) the experience of barriers to participation, whether rated by parents or therapists, predicted higher rates of dropping out of treatment, fewer weeks in treatment, and higher rates of cancelled appointments and not showing up for sessions; (c) the perception of barriers was distinguishable from several family, parent, and child characteristics assessed at intake and the experience of critical life events during treatment; and (d) perceived barriers added significant information in predicting participation in treatment, over and above other characteristics that are already known to predict poor participation in treatment. Barriers associated with treatment participation can help identify cases at risk for dropping out and suggest targets for intervention to improve retention of families in treatment.
Basal hemsjukvård för äldre personer med långvariga vårdbehov : hur kan vården förbättras?
Törnkvist, L. & Wånell, S-E.
(2008)
Basal hemsjukvård för äldre personer med långvariga vårdbehov : hur kan vården förbättras?
Törnkvist, L. & Wånell, S-E.
(2008)
Beardslees preventiva familjeintervention för barn med föräldrar med psykisk sjukdom-Svenska familjers erfarenheter
Pihkala, H.
(2011)
Det har varit känt sedan länge att barn till föräldrar med psykisk sjukdom löper en hög risk att drabbas av psykiska och andra problem både under uppväxten och senare i livet. Ändå har vuxenpsykiatrin alltför ofta försummat att möta patienters barn och erbjuda stöd. I flera nordiska länder har lagstiftningen nyligen kompletterats med bestämmelser som förpliktigar hälso- och sjukvårdspersonalen att uppmärksamma barnens och familjernas behov av information och stöd när föräldern lider av en allvarlig sjukdom. Beardslees preventiva familjeintervention (FI) är den första familjefokuserade och strukturerade metoden som har använts i Sverige. Den har viss evidens för positiva långtidseffekter för barn och familjer när föräldern har depression. Avhandlingens syfte var att studera FI:s säkerhet och genomförbarhet i Sverige (studie I), dess upplevda effekter för familjer (studie I, III och IV) och familjeinterventionsprocessen ur alla familjemedlemmars perspektiv (studie II, III och IV). Studierna genomfördes i en naturalistisk kontext. Data i studie I samlades med en enkät som gavs till föräldrar och barn (117 föräldrar och 89 barn svarade) en månad efter en FI. I studie II intervjuades tio föräldrar med depressionsdiagnos om deras beslutsprocess fram till deltagande i en FI. I studie III och IV presenteras data från 25 intervjuer med föräldrar och 14 intervjuer med barn om deras erfarenheter av FI. Sjuttiofem behandlare från 29 psykiatriska enheter hade genomfört familjeinterventionerna för familjerna som deltog i studierna. Data analyserades med deskriptiv statistik och chi2 (I), Grounded theory (II och III) och kvalitativ innehållsanalys (IV). Resultaten från studie I visade, att den allmänna tillfredsställelsen med FI var hög både hos föräldrar och hos barn. Nittiotre procent av svaren från föräldrarna och 71 % från barnen var positiva gällande frågor om tillfredsställelse med och allmänna erfarenheter av FI. De rapporterade upplevda effekterna av FI var också övervägande positiva. Skuldkänslor minskade för 89 % av barnen som hade haft skuldkänslor gentemot föräldern innan FI. Kunskap om förälderns sjukdom upplevdes öka för 74 % av barnen. Barnen rapporterade några negativa effekter; fem barn upplevde ökad oro för föräldern och tre barn sämre mående efter FI.
I studie II intervjuades föräldrar med depressionsdiagnos vilket visade en ambivalens i beslutet att delta i en FI. Föräldrarna längtade efter att få veta hur deras barn mådde, hur de tänkte om sjukdomen och om de hade farit illa. Å andra sidan var föräldrarna oroliga inför att få svaren på dessa frågor iv
på grund att en hel del skuld- och skamkänslor var kopplade till frågan om barnens mående. Att utsättas för insyn i familjen var både en lättnad och skrämmande. Föräldrarnas erfarenheter undersöktes också i studie III. Att öppna upp en dialog med barnen om den psykiska sjukdomen var krävande. Att lyssna på barnens erfarenheter, att hitta lämpliga ord och slutligen börja prata om sjudomen i familjeträffen krävde att det fanns en grund av trygghet och förtroende både för behandlarna och för metoden. FI som metod verkade ge goda förutsättningar för att behandlarna skulle kunna etablera en allians med föräldrarna. Barnens erfarenheter presenteras i studie IV. De flesta barn beskrev en känsla av lättnad på grund av mer kunskap om förälderns sjukdom och öppnare kommunikation i familjen, därmed kände de också befrielse från en del av oron för föräldern. Barnen berättade att de kunde vara mer med sina vänner och inte längre behövde ta lika mycket ansvar hemma. Föräldrar och barn från samma familjer beskrev förändringarna på ett likartat sätt, tydande på att det fanns en ömsesidig förståelse i familjerna. Föräldrarna upplevde sig själva stärkta i sitt föräldraskap och deras skamkänslor hade minskat. Sammanfattningsvis är familjerna nöjda med sitt deltagande i FI, de rapporterar positiva effekter och andelen upplevda negativa effekter är låg. Barnen beskriver en känsla av lättnad och en befrielse från oron över förälderns sjukdom.
Bearing witness to life narratives: Iranian immigrant experiences of taking care of a family member with dementia
Mazaheri M, Sunvisson H, Nikbakht AN, Maddah MS, Emami A.
(2011)
Caring for a person with dementia is one of the most devastating and challenging experiences that caregivers have to face. Many studies indicate that the experience of care giving reflects cultural care values and beliefs. Even though dementia care giving is the most frequently studied type of care as reflected in the literature, few studies have focused on dementia caregivers from culturally and linguistically diverse backgrounds. The purpose of this study was to explore Iranian immigrant experiences of taking care of a family member with dementia.An interpretive phenomenological approach was employed to investigate the experiences of ten Iranian family caregivers, each caring for a family member with dementia and living in Sweden. Caregivers were recruited through purposeful sampling and took part in semi-structured interviews. All of the individuals who were contacted participated in the study. The participants included seven women and three men, ranging in age from 40 to 65 years, from different cities. They had all lived in Sweden for at least 20 years. Two caregivers were married to people with dementia, and eight were caring for parents with dementia. Data analysis was guided by Benner's interpretive phenomenology and revealed three key themes, namely caring as an experience of fulfillment, admitting the diagnosis of dementia, and the shock of not being recognized by their family members with dementia. Positive aspects of care giving should be recognized and supported in order to facilitate the maintaining of caregivers' involvement. The positive experiences of care giving could help to alleviate the problems that are experienced by the caregivers of people with dementi
Beck Depression Inventory: Second Edition Manual
Beck AT, Steer RA, Brown GK.
(1996)
The BDI-II represents a highly successful revision of an acknowledged standard in the measurement of depressed mood. The revision has improved upon the original by updating the items to reflect contemporary diagnostic criteria for depression and utilizing state-of-the-art psychometric techniques to improve the discriminative properties of the instrument. This degree of improvement is no small feat and the BDI-II deserves to replace the BDI as the single most widely used clinically administered instrument for the assessment of depression.
[출처] Beck depression inventory -II|작성자 Mirr
Beck Youth inventories of emotional and social impairment
Beck JS, Beck AT, Jolly J.
(2001)
Becoming a client of the Danish social service system increases stress in parents of disabled infants
Graungaard, A. H., Skov, L., & Andersen, J. S.
(2011)
INTRODUCTION:
Parents of a young child with severe disabilities are facing a large range of new challenges; furthermore, most of these families have extended social needs regarding information, financial support, day care facilities, disability aids, etc. Many parents with disabled children have been found to be dissatisfied with social services. This study explores parents' experiences with Danish social services during their transition to a new daily life after the birth of a severely disabled child.
MATERIAL AND METHODS:
Repeated qualitative interviews were performed individually with 16 parents of a severely disabled young child during the first two years after the diagnosis of the child's disabilities. Data were analysed using grounded theory.
RESULTS:
We found that the encounter with the social services increased stress in the families. Parental expectations were not met, especially regarding information; parents felt clientized, and obtaining social support was very resource consuming. Parents' needs regarding practical support and empathic case-working were not met and they spent much time and effort due to lacking continuity between sectors.
CONCLUSION:
Parents have specific needs when becoming clients in the social service system whose organisation of social services needs improvement. Health care professionals are advised to identify problems and support cooperation between the parents and the social service system, as well as to report the health-related consequences of prolonged and inefficient case-working for the child and its parents.
FUNDING:
was received from Socialministeriet, Landsforeningen LEV, Ronald McDonalds Børnefond, Susie og Peter Robinsohns fond, Rosalie Petersens fond, PLU-fonden, Ville Heises fond, Sygesikringens forskningsfond, Helsefonden, Elsass fonden.
Behavior therapy for drug abuse: a controlled treatment outcome study
Azrin N, McMahon P, Donohue B, Besalel V, Lapinski K, Kogan E, et al.
(1994)
82 Ss were studied in a comparative evaluation of a behavioral vs supportive treatment for illegal drug use. Behavioral treatment included stimulus control, urge, control, contracting/family support and competing response procedures for an average of 19 sessions. 37% of Ss in the behavioral condition were drug-free at 2 months, 54% at 6 months, and 65% at 12 months vs 20 +/- 6% for the alternative treatment during all 12 months. The behavioral treatment was more effective across sex, age, educational level, marital status and type of drug (hard-drugs, cocaine, and marijuana). Greater improvement for this condition was also noted on measures of employment/school attendance, family relationships, depression, institutionalization and alcohol use.
Behavior therapy for drug abuse: a controlled treatment outcome study
Azrin N, McMahon P, Donohue B, Besalel V, Lapinski K, Kogan E, et al.
(1994)
82 Ss were studied in a comparative evaluation of a behavioral vs supportive treatment for illegal drug use. Behavioral treatment included stimulus control, urge, control, contracting/family support and competing response procedures for an average of 19 sessions. 37% of Ss in the behavioral condition were drug-free at 2 months, 54% at 6 months, and 65% at 12 months vs 20 +/- 6% for the alternative treatment during all 12 months. The behavioral treatment was more effective across sex, age, educational level, marital status and type of drug (hard-drugs, cocaine, and marijuana). Greater improvement for this condition was also noted on measures of employment/school attendance, family relationships, depression, institutionalization and alcohol use.
Behavior therapy for Tourette's disorder: Utilization in a community sample and an emerging area of practice for psychologists
Woods, D. W., Conelea, C. A., & Himle, M. B.
(2010)
The current article describes the phenomenology and empirically supported treatments for Tourette's disorder (TD) and presents data on treatment utilization from two separate national surveys of adults with TD (N = 672) and parents of children with TD (N = 740). Despite a wealth of empirical evidence demonstrating its effectiveness, results suggest that most people with TD do not receive behavior therapy for the condition. Reasons for this include a lack of information about the disorder among consumers and providers, a shortage of providers trained in the treatment, and concern about possible negative effects of behavioral treatment. The article concludes with a discussion about dissemination efforts aimed at making behavior therapy more widely available to children and adults with chronic tics and a review of beliefs about the negative effects of behavior therapy. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Behavioral adjustment and self-esteem of school-age children of women with breast cancer
Armsden, G. C. and F. M. Lewis
(1994)
PURPOSE/OBJECTIVES: To describe children's psychosocial adjustment to their mother's breast cancer and to compare their level of adjustment with normative data and with the level of adjustment of children of women with fibrocystic breast disease or diabetes. Hypotheses tested were (a) children of women with breast cancer would be most negatively affected and (b) families of mothers with fibrocystic breast disease would require less family adaptation than families of women with breast cancer or diabetes. DESIGN: One component of a larger longitudinal survey. SETTING: University-based physician clinic in a metropolitan area in the Northwestern United States. SAMPLE: Mothers, predominantly Caucasian, with medically controlled diabetes mellitus (n = 18), nonmetastatic breast cancer (n = 13), or biopsy-proven fibrocystic breast disease (n = 17) and their children (N = 48), who ranged in age from 6 to 12. METHODS: Five in-home interviews conducted at four-month intervals. MAIN OUTCOME MEASURES: Behavioral adjustment using the Louisville Behavior Checklist (maternal report) and the Zeitlin Coping Inventory (nurse-observer report) and self-esteem using the Personal Attribute Inventory for Children (children's self-report). FINDINGS: Children of women with breast cancer scored better than average on behavioral adjustment (mothers' ratings) and were judged by nurse observers to be better behaviorally adjusted than children in the noncancer illness groups. Children of women with breast cancer and of women with diabetes tended to score significantly lower on self-esteem than the comparative sample. CONCLUSIONS: Measures of childhood adjustment to chronic medical illness in mothers need to distinguish between behavioral adjustment and self-esteem. Discrepancies between child ratings and mother and nurse-observer ratings suggest that differences exist. IMPLICATIONS FOR NURSING PRACTICE: Findings are preliminary in nature, and other explanations for findings must be ruled out. However, if a child's self-appraisal is affected negatively by the mother's illness, it would be appropriate to identify ways to increase emotional and physical exchange with the child and to interpret inaccessibility in ways that protect the child's positive self-appraisal.
Behavioral Assessment System for Children
Reynolds C, Kamphaus R.
(1992)
The Behavior Assessment System for Children, Second Edition (BASC–2; Reynolds & Kamphaus, 2004) is a multimethod, multidimensional system used to evaluate the behavior and self-perceptions of children, adolescents, and young adults aged 2 through 25 years. The BASC–2 is multimethod in that it has the following components, which may be used individually or in any combination: (1) two rating scales, one for teachers (Teacher Rating Scales, or TRS) and one for parents (Parent Rating Scales, or PRS), which gather descriptions of the child's observable behavior, each divided into age-appropriate forms; (2) a self-report scale (Self-Report of Personality, or SRP), on which the child or young adult can describe his or her emotions and self-perceptions; (3) a Structured Developmental History (SDH) form; (4) a form for recording and classifying directly observed classroom behavior (Student Observation System, or SOS), which is also available for PDA applications as an electronic version known as the BASC–2 POP or Portable Observation Program; and (5) a self-report for parents of children ages 2–18 years, designed to capture a parent's perspective on the parent-child relationship in such domains as communication, disciplinary styles, attachment, involvement, and others.
Behavioral Couples Therapy for the Treatment of Substance Abuse: A Substantive and Methodological Review of O'Farrell, Fals-Stewart, and Colleagues' Program of Research.
Ruff S, McComb JL, Coker CJ, Sprenkle DH.
(2010)
Behavioral couples therapy (BCT) is an evidence-based couple therapy intervention for married or cohabitating substance abusers and their partners. This paper provides readers with a substantive and methodological review of Fals-Stewart, O'Farrell, and colleagues' program of research on BCT. The 23 studies included in this review provide support for the efficacy of BCT for improving substance use behavior, dyadic adjustment, child psychosocial outcomes, and reducing partner violence. This review includes a description of BCT, summaries of primary and secondary outcomes, highlights methodological strengths and weaknesses, notes barriers to dissemination, suggests future research directions, and provides clinical implications for couple and family therapists. Although there are several versions of BCT developed for the treatment of substance abuse this paper focuses on the version developed by O'Farrell, Fals-Stewart, and colleagues.
Behavioral family counseling for substance abuse: a treatment development pilot study
O'Farrell TJ, Murphy M, Alter J, Fals-Stewart W.
(2010)
Substance-dependent patients (N=29) living with a family member other than a spouse were randomly assigned to equally intensive treatments consisting of either (a) Behavioral Family Counseling (BFC) plus Individual-Based Treatment (IBT) or (b) IBT alone. Outcome data were collected at baseline, post-treatment, and at 3- and 6-month follow-up. BFC patients remained in treatment significantly longer than IBT patients. BFC patients improved significantly from baseline at all time periods on all outcomes studied, and had a medium effect size reflecting better primary outcomes of increased abstinence and reduced substance use than IBT patients. For secondary outcomes of reduced negative consequences and improved relationship adjustment, both BFC and IBT patients improved significantly and to an equivalent extent. The present results show BFC is a promising method for retaining patients in treatment, increasing abstinence, and reducing substance use. These results also provide support for larger scale, randomized trials examining the efficacy of behavioral family counseling for patients living with family members beyond spouses.
Behavioral parent training as an adjunct to routine care in children with attention-deficit/hyperactivity disorder: moderators of treatment response
van den Hoofdakker, B. J., Nauta, M. H., van der Veen-Mulders, L., Sytema, S., Emmelkamp, P. M. G., Minderaa, R. B., & Hoekstra, P. J.
(2010)
OBJECTIVE:
To investigate predictors and moderators of outcome of behavioral parent training (BPT) as adjunct to ongoing routine clinical care (RCC), versus RCC alone.
METHODS:
We randomly assigned 94 referred children (4-12 years) with attention-deficit/hyperactivity disorder (ADHD) to BPT plus RCC or RCC alone. Outcome was based on parent-reported behavioral problems and ADHD symptoms. Predictor/moderator variables included children's IQ, age, and comorbidity profile, and maternal ADHD, depression, and parenting self-efficacy.
RESULTS:
Superior BPT treatment effects on behavioral problems and ADHD symptoms were present in children with no or single-type comorbidity-anxiety/depression or oppositional defiant disorder (ODD)/conduct disorder (CD)-and when mothers had high parenting self-efficacy, but absent in children with broad comorbidity (anxiety/depression and ODD/CD) and when mothers had low parenting self-efficacy. In older children ADHD symptoms tended to decrease more through BPT than in younger children.
CONCLUSIONS:
Adjunctive BPT is most useful when mothers have high parenting self-efficacy and in children with no or single-type comorbidity.
Behaviour style and interaction between seven children with multiple disabilities and their caregivers
Wilder, J. and M. Granlund
(2003)
Introduction. Recent studies show that the existing interaction patterns of children with multiple disabilities should be taken into consideration when planning communication interventions. For children with disabilities, it is especially important that the partner in interaction is sensitive and well aware of the importance of a qualitatively successful interaction. Wilder (unpublished report) found that the behaviour style of 30 children with multiple disabilities was more related to the caregiver-perceived interaction than the communicative skills and functional abilities of the children. This study inductively explored the caregivers' perceptions of interaction within seven caregiver-child dyads. The research questions were: How do the caregivers perceive the interaction? How do the caregivers perceive the children's behaviour style to be related to the interaction with the caregivers? Method. The children were selected individually from the participants in Wilder (unpublished report) depending upon the responses the caregivers had given about the children's self-regulation and reactivity in the Carolina Record of Individual Behaviour questionnaire. The study was undertaken by means of home visits where the caregivers participated in an interview asking about their strategies for interaction, how they perceived the roles of the children and their own roles in interaction, the caregivers' opinion of what an interaction constituted of and the caregivers' aims and aspiration for interaction. The data analysis was performed by meaning concentration and categorization through a pendulum between the parts and the entirety of the interviews. In this way, hermeneutics and thematic analysis were both being practised. Results. The results of the interviews are presented as a model with categorizations as a network. The categorizations reflect the system of themes that permeate how the caregivers perceived interaction in the dyad. The themes are: sharing of experience, successful interaction, role of the child, role of the caregiver, interaction methods, obstacles and facilitators and aims and aspirations. Discussion. The caregivers perceived their own role in interaction to be of a sensitive leading kind. The caregivers lead the interaction by using their knowledge about the children's usual way of interacting, the children's behaviour styles, functional abilities, the children's current mood and situation as well as the whole context. They monitored the interaction such that, throughout an interaction sequence, the caregivers always tried to optimize the interaction between the parties in the dyad. The behaviour style was a background factor that the caregivers had knowledge of and scanned in their everyday turn taking. Although there were differences in the children's behaviour styles, the caregivers discussed the same themes in the interviews. The behaviour style became a facilitator for the whole interaction, forced the interaction in certain directions and made the interaction more complete with turn taking of different kinds from both parties. The findings show that it is imperative to see caregivers as experts on their children and to make them assertive in this in relation to professionals. Furthermore, as a successful interaction can boost the development of children, it is essential to direct interventions to the everyday interaction in caregiver-child dyads.
Being a parent of an adult son or daughter with severe mental illness receiving professional care: parent`s narratives
Pejlert A.
(2001)
The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.
Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents’ narratives
Pejlert, Anita
(2001)
The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships''coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.
Being a relative of a person with dementia
Almberg, B., & Jansson, W.
(2002)
'Being appropriately unusual': a challenge for nurses in health-promoting conversations with families.
Benzein, E., Hagberg, M., & Saveman, B.
(2008)
This study describes the theoretical assumptions and the application for health-promoting conversations, as a communication tool for nurses when talking to patients and their families. The conversations can be used on a promotional, preventive and healing level when working with family-focused nursing. They are based on a multiverse, salutogenetic, relational and reflecting approach, and acknowledge each person's experience as equally valid, and focus on families' resources, and the relationship between the family and its environment. By posing reflective questions, reflection is made possible for both the family and the nurses. Family members are invited to tell their story, and they can listen to and learn from each other. Nurses are challenged to build a co-creating partnership with families in order to acknowledge them as experts on how to lead their lives and to use their own expert knowledge in order to facilitate new meanings to surface. In this way, family health can be enhanced.
Being appropriately unusual: a challenge for nurses in health-promoting conversations with families.
Benzein, E., Hagberg, M., Saveman. B.
(2008)
Being appropriately unusual: a challenge for nurses in health-promoting conversations with families.
Benzein, E., Hagberg, M., Saveman. B.
(2008)
Being in the light or in the shade: persons with Parkinson's disease and their partners' experience of support
Birgersson, A. M. and A. K. Edberg
(2004)
Interviews with six couples, persons with Parkinson's disease and their partners, were tape-recorded, transcribed and analysed using manifest and latent content analysis. The couples' experiences could be interpreted as Being in the light and Being in the shade of support, with internal variations for the patients and their partners. The narratives also revealed that the disease meant a transition of roles in their relation seen in different patterns: From unity towards unity, From unity towards distance and From distance towards unity. The results indicate that there is a need for more specialised and individually adjusted support.
Being perceived as a 'visitor' in the nursing staff's working arena - the involvement of relatives in daily caring activities in nursing homes in an urban community in Sweden
Holmgren J, Emami A, Eriksson LE, Eriksson H.
(2012)
Background: It is both complex and difficult for relatives when a loved one moves into a nursing home and many relatives are not prepared for the realities these new situations entail. Little attention has been paid to scrutinising the involvement of relatives in patient care, particularly in relation to the structures and routines of nursing homes or to the staff's reasoning concerning their involvement. Aim: To describe, from a gender perspective, how nursing staff's routines and reasoning act to condition the involvement of relatives in nursing homes. Methods: Focused ethnographic fieldwork was conducted in a medium-sized urban community in central Sweden in three different nursing homes. Results: The nursing staff assigns a certain code of conduct to all relatives they perceived as 'visitors' in their working arena. This code of conduct was related to the routines and subcultures existing among the nursing staff and stemmed from a division of labour; the underlying concept of 'visitor' predetermined the potential for relatives' involvement. This involvement is explicitly related to the general gendered characteristics that exist in the nursing staff's perception of the relatives. Discussion: The study's limitations are primarily concerned with shortcomings associated with a research presence during the fieldwork. The discussion focuses on the dimensions of power structures observed in the nursing home routines and the staff's reasoning based on their gendered assumptions. We argue that it is important to develop mechanisms that provide opportunities for nursing staff in elderly care to reflect on these structures without downplaying the excellent care they provide. We stress the importance of further exploring these issues concerning relatives and their involvement in nursing homes to facilitate the transition from informal caregiver to 'visitor'
Being the next of kin of an adult person with muscular dystrophy
Boström K, Ahlström G, Sunvisson H.
(2006)
A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.
Being the next of kin of an adult person with muscular dystrophy
Boström, K., Ahlström, G., & Sunvisson, H.
(2006)
A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N= 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n= 14), parent (18%, n= 7), child (21%, n= 8), sibling (15%, n= 6), and other relative (3%, n= 1). Latent content analysis is employed and involves an interpretation of the interviewtext. The results showthe meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.
Believe that all can achieve. Increasing classroom participation in learners with special support needs
Bornman J, Rose J.
(2010)
Freedom, dignity and equality - the core values of the South African Constitution (1996) - provide the foundation for developing inclusive societies.
Bemötande av anhöriga - hur blir vi bättre?
Backlund, J.
(2001)
Rapporter från Anhörig 300-konferenser våren 2001,Anhörig 300
Benjamin-Min mamma är speciell
Lazai Stefanie, Phol Stephan
(2006)
En bok för barn som handlar om att leva med en förälder som har MS. Boken Benjamin ger föräldrar och barn möjlighet att läsa och diskutera tillsammans. Den berättar om hur det är att leva med en mamma som har MS och tar upp de många oförutsägbara sidorna av sjukdomen. Boken förklarar på ett enkelt sätt vad som händer med mamman och stöttar Benjamin känslomässigt. Detta skapar insikt och trygghet för Benjamin och han blir stolt över hur hans mamma övervinner de svårigheter hon ställs inför.
Bereaved children – family intervention
Black, D. & Urbanovicz, M.
(1985)
This book contains a selection of papers presented at the 10th International Congress of the International Association for Child and Adolescent Psychiatry and Allied Professions, held in Dublin in 1982. Developments currently taking place in child psychiatry and clinical child psychology are represented, and in particular, the two themes of processes within families and evaluation of intervention reflect important aspects of research activities that have emerged recently.
Bereaved groups for inner-city children
Schilling, R.F., Koh, N., Abramovitz, R. & Gilbert, L.
(1992)
Guided by theory, empirical research, and clinical experience, this demonstration tested a 12-session group intervention for 38 inner-city children who had lost a caregiver. The design of the group intervention was guided by the psychodynamic tradition of the sponsoring agency, themes from the bereavement literature, and findings from intervention research on bereaved children and adults. Attendance for the group intervention was high among those 29 children who completed posttests. The loss of the parent figure often had an impact on caregiving and living arrangements. Children rated themselves as significantly more depressed at pretest than their caregivers rated them, but at posttest this difference diminished. However, the majority of children remained depressed throughout the study. Pretest and posttest comparisons suggest that the treatment intervention may have enabled children to develop a more mature concept of death. Mixed outcomes and the methodological limitations of the study allow for multiple interpretations. Nevertheless, modest results reported here may encourage other clinical researchers to build on this early effort. Better understanding of how to treat bereaved children must await controlled, longitudinal research.
Bereavement stressors and psychosocial well-being of young adults following the loss of a parent - A cross-sectional survey
Lundberg T., Forinder U., Olsson M., Fürst CJ., Årestedt K., Alvariza A.
(2018)
Abstract
PURPOSE:
The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adultsfollowing the loss of a parent to cancer. METHOD: This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire. RESULTS: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction. CONCLUSION: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss
Beroende av vård : Innebörden av fenomenet som det visar sig genom patienters, deras anhörigas och vårdares berättelser
Strandberg, G.
(2002)
Berättelser om att vara anhörig till barn och unga med flerfunktionsnedsättning
Anna Pella
(2018)
Sammanfattning
Den här skriften handlar om hur anhöriga till barn och unga med flerfunktionsnedsättning har gjort för att ta vara på livets möjligheter. Du möter Ellen, 8 månader, Elvira, 3 år, Miles, 5 år, Diamanda, 6 år, Hannes, 13 år, Liv, 14 år och Kim, 21 år. Deras anhöriga berättar bland annat om vikten av att träffa andra i liknande situation, att våga skaffa syskon och att ta vara på sig själv som förälder för att förebygga psykisk och fysisk ohälsa. Men de berättar också om barnets behov av att förebygga andningsproblem och att som förälder behöva möta okunskap och fördomar om barnets livskvalitet. Vi får också veta hur de gått till väga för att skapa ett bra liv för hela familjen med hjälp av personlig assistans och särskilt boende.
Foto: Anna Pella
Berättelser om ensamhetens vardag hos människor med psykiska funktionshinder.
Erdner, Anette
(2006)
Best practice in key working: what do research and policy have to say?
Cavet, J.
(2007)
Between 'Choice' and 'Active Citizenship': Competing Agendas for Home Care in the Netherlands
Grootegoed, E.
(2013)
Choice over home care has become an important pillar in the provision of publicly financed long-term care for people of all ages. In many European welfare states, cash-for-care schemes give care recipients greater choice over home care arrangements by allowing them to pay for care provided by acquaintances, friends and even family members. Paying for such informal care, however, is increasingly contested due to growing care needs, rising costs and the perceived need to tighten access to publicly funded care. Citizens in paid care-giving roles are thus pressured to continue their care unpaid or re-divide their care-giving responsibilities with lay 'citizen-carers'. On the basis of a Dutch case study, this article examines how paid family care-givers experience this call for greater self-sufficiency in providing care. An analysis of 25 interviews and 21 letters of complaint revealed that care-givers felt trapped between their desire to derive social status from paid work and their inability to reject or re-divide previously paid care responsibilities. In a society where all citizens are expected to work, care-givers feel that their previously paid care-giving is devalued from a public to a private matter, despite the government's attempts to reframe care as an act of good citizenship.
Between elderly parents and grandchildren : Geographic proximity and trends in four-generation families
Lundholm, E., & Malmberg, G.
(2010)
In an ageing society, families may have an important role in the caretaking and well-being of the elderly. Demographic changes have an impact on the size and structure of families; one aspect is how intergenerational support is distributed when there is a need for support to both older and younger generations at the same time. Another vital aspect of the provision of care for the elderly is geographic proximity. This study is oriented towards the potential "both-end carers" i.e. persons who have grandchildren in potential need of care while still having living ageing parents. The incidence of having grandchildren and having living parents at age 55 and the proximity between generations is described using Swedish register data. The results show that the share of 55-year-olds who are grandparents decreased dramatically from 70% to 35% between 1990 and 2005. As expected, more 55-year-olds have living parents—a proportion that increased from 37% to 47% during this period. As a result of delayed childbearing among the children of these cohorts, the likelihood of belonging to a four-generation family among 55-year-olds has not increased, despite increased longevity. Furthermore, most individuals live within daily reach of their kin and no evidence was found of a trend of increasing geographic distances between generations.
Beyond stroke: Description and evaluation of an effective intervention to support family caregivers of stroke patients.
Schure LM, van den Heuvel ETP, Stewart RE, Sanderman R, de Witte LP, Meyboom-de Jong B.
(2006)
OBJECTIVE:
The objective of this study was to evaluate the strengths and weaknesses of a group support program and a home visiting program for family caregivers of stroke patients. It also examined the best fit between intervention variant and family caregiver and patient characteristics. van den Heuvel's previous effect study showed positive effects of the same intervention program, but unlike our present study differences between the two support variants could not be measured.
METHODS:
Of 257 family caregivers who were included and randomly assigned to an intervention variant or a control group, 127 family caregivers completed the intervention in either the group program or the home visiting program.
RESULTS:
Evaluation data showed that both intervention variants had been helpful and feasible, but home visit participants missed peer contact and follow-up contacts were missed in both intervention programs. In comparison to the home visiting program, the group program participants showed more benefit especially with respect to informational and emotional components. Caregivers' preference for type of intervention revealed that both types of intervention had its supporters. Those that preferred the group program could be clearly characterised: they were burdened, lived with a more psychologically handicapped relative, were using active coping strategies more frequently or lived in a region which is considered to be more sociable.
CONCLUSION:
The present study adds extensively to van den Heuvel's effect study with respect to discriminative aspects of group and home intervention programs and their respective benefits for specific family caregiver groups.
PRACTICE IMPLICATIONS:
In order to suitably match an intervention type with specific caregiver characteristics the intervention provider should utilize caregiver self-selection or undertake professional screening of caregiver burden. Telephone contacts should be offered in addition to the interventions.
Beyond the definition of formal care: Informal care arrangements among older swedes who are not family
Siira, Elin; Rolandsson, Bertil; Wijk, Helle; Wolf, Axel
(2020)
Despite the well‐known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long‐term illness, and associations with health‐seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004–2014, an annually repeated, large sample, cross‐sectional, population‐based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non‐adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00–1.22), and non‐adherence (adjusted OR 1.22; 95% CI 1.13–1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51–1.67) and non‐adherence (adjusted OR 1.26, 95% CI 1.17–1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non‐adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health‐seeking behaviour and non‐adherence to prescribed medication.
Beyond the definition of formal care: Informal care arrangements among older swedes who are not family
Siira, Elin; Rolandsson, Bertil; Wijk, Helle; Wolf, Axel
(2020)
Abstract
This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.
Bibliotherapy: An intervention designed for siblings of children with autism [Thesis UMI nr 3457982].
Strobel D.
(2012)
This mixed-method study investigated the use of a bibliotherapy intervention that was designed specifically for preteen siblings of children with autism. Bibliotherapy is a facilitated method in which books related to participants' issues are used in order to help develop their insight about circumstances they share. Approximately one million siblings of children with autism have unique life circumstances that only those with similar lives can understand. Siblings, an intricate part of the dynamic family system, are often excluded from social services that are available to parents and children with autism. Siblings of children with autism can benefit from support, too; however, intervention research that investigates the effectiveness of supporting siblings of children with autism is limited.
The purposes of this study were to measure the effectiveness of a bibliotherapy intervention and to examine whether participants progressed through the three stages of bibliotherapy, increased their knowledge of autism, and whether interactions with their family members changed as a result of engaging in bibliotherapy sessions. Six participants, male and female, attended six bibliotherapy sessions. The book Rules (Lord, 2006) was the catalyst for the sibling discussion and activities that were a part of each bibliotherapy session. Pre and post surveys, sibling comments expressed during the bibliotherapy sessions, and sibling journal entries were used to collect data. The data were then analyzed using the Page Test for Ordered Alternatives and the Wilcoxon Signed-Ranks test (WSR). Results indicated statistically significant outcomes for increasing autism knowledge and nonstatistically significant results for progressing through the three stages of bibliotherapy and changes in family interactions. However, parents reported that the participant siblings demonstrated an increase in understanding and patience for their brothers with autism, and the siblings reported overall satisfaction with the bibliotherapy intervention. Results, implications, and recommendations for future research are provided.
Bildens yta och djup. Grunder för en bildsemiotik
Sonesson, G.
(2001)
Man kan urskilja två ursprung till bildsemiotiken, dels ur försöker att avleda en modell ur studiet av enskilda bilder, som växer fram ur kritiken av Barthes första, enligt allakompetenta bedömare ganska misslyckade försök med utgångspunkt i en reklambild; och dels ur kritiken av Peirces ikonicitetsbegrepp hos Bierman, Lindekens och Eco och av det vardagliga bildbegreppet grundat på likhet hos Goodman, som också bygger påmånga missförstånd. I denna artikel diskuteras i viss mån den första traditionen, men huvuddelen ägnas åt den andra. En ny teori på fenomenologisk grundval angående den speciella form av ikonicitet som förekommer i bilder lägges fram, och denna ikonicitetkontrasteras med andra typer. En allmän indelning i primär och sekundär ikonicitet föreslages.
Bildens yta och djup. Grunder för en bildsemiotik
Sonesson, G.
(2001)
Man kan urskilja två ursprung till bildsemiotiken, dels ur försöker att avleda en modell ur studiet av enskilda bilder, som växer fram ur kritiken av Barthes första, enligt allakompetenta bedömare ganska misslyckade försök med utgångspunkt i en reklambild; och dels ur kritiken av Peirces ikonicitetsbegrepp hos Bierman, Lindekens och Eco och av det vardagliga bildbegreppet grundat på likhet hos Goodman, som också bygger påmånga missförstånd. I denna artikel diskuteras i viss mån den första traditionen, men huvuddelen ägnas åt den andra. En ny teori på fenomenologisk grundval angående den speciella form av ikonicitet som förekommer i bilder lägges fram, och denna ikonicitetkontrasteras med andra typer. En allmän indelning i primär och sekundär ikonicitet föreslages.
Bilder från framtiden : halländsk äldreomsorg år 2020
Sarge, M. & Gustafsson, S.
(2007)
Caregiving Burden, Community Services, and Quality of Life of Primary Caregivers of Frail Elderly Persons
Iecovich, E.
(2008)
Caregiving Tasks and Training Interest of Family Caregivers of Medically Ill Homebound Older Adults
Wilkins, V. M., Bruce, M. L. & Sirey, J. A.
(2009)
Carer support needs assessment in end of life home care: developing a tool for routine practice
Ewing, G., Grande, G., & Payne, S.
(2010)
Carers' experiences with overnight respite care : a qualitative study.
Fjelltun, A.-M. S.
(2009)
Carers, employment and services in their local context.
Yeandle, S., Bennett, C. & Buckner, L.
(2007)
Carers, Employments and Services: time for a new social contract?
Yeandle, S. & Buckner, L.
(2007)
Carers, Employments and Services: time for a new social contract?
Yeandle, S. and L. Buckner
(2007)
Carers in the welfare state : on informal care and support for carers in Sweden.
Jegermalm, M.
(2005)
The general aim of this dissertation is to describe and analyse patterns of informal care and support for carers in Sweden. One specific aim is to study patterns of informal care from a broad population perspective in terms of types of care and types of carer. A typology of four different care categories based on what carers do revealed that women were much more likely than men to be involved at the 'heavy end' of caring, i.e. providing personal care in combination with a variety of other caring tasks. Men were more likely than women to provide some kind of practical help (Study I).Another aim is to investigate which support services are received by which types of informal caregiver. Relatively few informal caregivers in any care category were found to be receiving any kind of support from municipalities or voluntary organizations, for example training or financial assistance (Study II).The same study also examines which kinds of help care recipients receive in addition to that provided by informal carers. It appears that people in receipt of personal care from an informal caregiver quite often also receive help from the public care system, in this case mostly municipal services. However, the majority of those receiving personal, informal care did not receive any help from the public care system or from voluntary organizations or for-profit agencies (Study II).The empirical material in studies I and II comprises survey data from telephone interviews with a random sample of residents in the County of Stockholm aged between 18 and 84.In a number of countries there is a growing interest among social scientists and social policymakers in examining the types of support services that might be needed by people who provide informal care for older people and others. A further aim of the present dissertation is therefore to describe and analyse the carer support that is provided by municipalities and voluntary organizations in Sweden. The dissertation examines whether this support is aimed directly or indirectly at caregivers and discusses whether the Swedish government's special financial investment in help for carers actually led to any changes in the support provided by municipalities and voluntary organisations. The main types of carer support offered by the municipalities were payment for care-giving, relief services and day care. The chief forms of carer support provided by the voluntary organizations were support groups, training groups, and a number of services aimed primarily at the elderly care recipients (Study III).Patterns of change in municipal carer support could be discerned fairly soon. The Swedish government's special allocation to municipalities and voluntary organisations appears to have led to an increase in the number of municipalities providing direct support for carers, such as training, information material and professional caregiver consultants. On the other hand, only minor changes could be discerned in the pattern of carer support services provided by the voluntary organizations. This demonstrates stability and the relatively low impact that policy initiatives seem to have on voluntary organizations as providers (Study IV).In studies III and IV the empirical material consists of survey data from mail questionnaires sent to municipalities and voluntary organizations in the County of Stockholm.In the fields of social planning and social work there appears to be a need to clarify the aims of support services for informal carers. Should the support be direct or indirect? Should it be used to supplement or substitute caregivers? In this process of reappraisal it will be important to take the needs of both caregivers and care recipients into account when developing existing and new forms of support. How informal caregivers and care recipients interact with the care system as a whole is undeniably a fertile field for further research.
Bipolär sjukdom – ur ett existensiellt perspektiv [Akademisk avhandling].
Rusner M.
(2012)
Aim: The overall aim was to create knowledge about what it means to live with bipolar
disorder from an existential perspective, both for individuals with the diagnosis and for
their close relatives.
Method: An existential perspective in this context entails that it is explored and
described from a lifeworld perspective of individuals who in various ways experience
that which is termed as bipolar disorder. The lifeworld phenomenological approach
Reflective Lifeworld Research (RLR) was used in the four empirical studies. Meaningoriented
interviews and analysis were conducted following the leading methodological
principles of the chosen scientific approach. A synthesis, based on lifeworld
hermeneutic existential philosophy, then presents how it is possible to understand the
perspective of individuals with bipolar disorder and their close relatives as a coherent
whole.
Findings and conclusions: A magnitude and complexity of experiencing, which means
that life with bipolar disorder is characterized by extra dimensions, specific tension and
contradictions, has been elucidated. Knowledge of the meaning of these aspects
enables for the persons with the illness and for their close relatives to understand, to
put words to, and to communicate how their life is and what they need, which in turn
enhances their ability to influence their lives. It also increases the opportunities for
professional caregivers to develop care, both in content and organization, so that it can
meet the actual needs of those concerned in an adequate way.
Living with bipolar disorder means so much more than the usual description with
changes between episodes of depression and mania. The diagnosis "bipolar disorder"
thus appears to be an inadequate label that only reflects the more obvious and visible
dimensions of the illness, while those that characterize life in its entirety remain
hidden.
The thesis also shows that the importance of the common everyday life of persons with
bipolar disorder and their close relatives should be highlighted as the most important
factor in a liveable existence. A change in the view of mental health care is thus
needed; a change that is characterized by consensus, collaboration and transparent
communication between the person with the illness, their close relatives and mental
health care. The common goal should be about meeting actual needs, and to
strengthen a profound connectedness in order to make everyday life more liveable.
Blandade lärande nätverk : ett verktyg för kunskaps- och erfarenhetsutbyte.
Sennemark, E.
(2010)
Metoden blandade lärande nätverk har provats och utvärderats inom Nationellt kompetenscentrum Anhöriga. Rapport från Teknik för äldre.
Blended learning networks supported by information and communication technology: An intervention for knowledge transformation within family care of older people
Hanson E, Magnusson L, Sennemark E.
(2011)
Purpose: This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. Design and Methods: An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Results: Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. Implications: BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.
Blended learning networks supported by information and communication technology: An intervention for knowledge transformation within family care of older people
Hanson E, Magnusson L, Sennemark E.
(2011)
Purpose: This article describes an innovative practice called Blended Learning Networks (BLNs) whose aim is to enable older people, their families, and care providers to exchange knowledge, learn together, and support each other in local development work so that care is improved for older people. BLNs were established in 31 municipalities, headed up by a local facilitator. They were supported by a national themed network consisting of virtual meetings between local facilitators and national facilitators at the Swedish National Family Care Competence Centre. Design and Methods: An evaluation was conducted to explore the utility of the BLNs so that any improvements to the model could be instigated. Focus group interviews were conducted with members of 9 BLNs, and self-evaluation questions were discussed in 16 BLNs. Limitations are that not all BLN members participated in the evaluation, and local facilitators conducting self-evaluations were not trained in focus group dynamics. Virtual focus groups were carried out with 26 of the 31 local facilitators and with the national facilitators. Results: Participants reported an increased understanding of caregiver issues and of each group's roles. Of particular value were the stories shared by caregivers and the potential for change locally due to the involvement of decision makers. The practice demanded considerable skills of the local facilitators. An initial education for new local facilitators was deemed necessary. Implications: BLNs is a unique practice of community communications and knowledge transfer as it creates partnerships among all key stakeholder groups that act as a catalyst for improving care for older people.
Bloodlines: from ethnic pride to ethnic terrorism
Volkan, V.
(1997)
In the wake of recent conflicts in Russia and the former Yugoslavia, ethnic terrorism and ethnic cleansing have become household words. Yet we are at a loss to find solutions to such struggles. In Bloodlines, Vamik Volkan, a world-renowned psychiatrist specializing in international relations, explores ethnic violence by examining history and diplomacy through a psycho-analytic lens.Dr. Volkan leads the reader on investigative tours of battlegrounds in the Middle East, Russia, Turkey, Cyprus, the Baltics, and the Balkans. In Serbia, he discovers that the Battle of Kosovo, fought in 1389, is the rallying cry for modern nationalists, who view the past as prophecy. In Turkey, PKK terrorist leader Apo reveals that he still considers himself an unloved child and orders his army of Kurdish women to remain virgins because of his own disgust with "unclean" adult behavior. In Latvia, after the dissolution of the USSR, Dr. Volkan learns that ethnic Latvians plan to disinter corpses and segregate cemeteries in an attempt to establish a national identity separate from that of Russia. Drawing on a variety of disciplines, Dr. Volkan analyzes these issues of identity formation, perceived versus real threats, the persistence of past traumas, and the desire for revenge.The result is a work that lays the foundation for understanding the differences between ethnic groups as well as the common ground they share. Timely, brilliant, and gripping, Bloodlines gives fascinating insights into how personal identity intertwines with nationality, and why hatred of others becomes a part of our sense of self.
Blunda och räkna till hundra
Pernilla Soland
(2021)
Sammanfattning:
Boken berör ämnen som är högaktuella 2021, inte minst i relation till den ökning av postvirala sjukdomar vi lär få se i covids kölvatten. Berättelsen tar sin start i den pandemi som nu rasar kring oss.
Redan innan vår nya samtid drabbade oss fick dottern Linnea ett virus som inte släppte sitt grepp. Snart fick hon nya märkliga symtom. Ändå slog hennes läkare lugnt fast att barn kunde råka ut för postviral trötthet, något som skulle gå över med tiden. Men Linnea blev bara sämre. Likt en inkräktare trängde sig en okänd sjukdom in i familjens trygga liv på Gotland. Sjukdomen visade sig vara lika svår att göra sig av med som att lära känna - mardrömmen blev verklighet.
I boken får vi följa föräldrarnas kamp för att rädda dottern. Samtidigt faller de som anhörigvårdare genom revorna i välfärdens redan grovmaskiga nät. Med ett särpräglat språk som når ända in i själen skildras utmaningar och sorger vi alla kan drabbas av när någon vi älskar blir allvarligt sjuk.
Bo hemma på äldre dar. Äldreuppdraget 2000:11 (förf. Sundström G.)
Socialstyrelsen
(2000)
Boende utanför det egna hemmet-placeringsformer för barn och unga. Delbetänkande av Utredningen om tvångsvård för barn och unga
SOU
(2014)
Regeringen beslutade den 12 juli 2012 att tillkalla en särskild utredare med uppdrag att göra en översyn av lagen (1990:52) med särskilda bestämmelser om vård av unga (LVU). Av direktiven framgår att även vissa frågor som rör socialtjänstlagen (2001:453, SoL) ingår i uppdraget (dir. 2012:79). Syftet är att ytterligare stärka barnrättsperspektivet och rättssäkerheten för barn och unga.
Genom tilläggsdirektiv, beslutade den 19 juni 2013, har utredningen dessutom fått uppdraget att se över olika placeringsalternativ för barns och ungas boende, vård och fostran enligt SoL och LVU och att lämna förslag till flera alternativ än vad som finns i dag.
Detta delbetänkande innehåller förslag i enlighet med tilläggsdirektiven. Därutöver behandlas vissa frågor som ingår i utredningens ursprungliga direktiv.
Boken om anhörigstöd
Larsen, T. and P. Schmidtbauer
(2009)
Boken om anhörigstöd
Larsen, T & Schmidtbauer, P.
(2009)
Breaking the Cycle of Addiction: Prevention and Intervention With Children of Alcoholics
Price AW, Emshoff JG.
(1997)
Children of alcoholics (COA's) are at increased risk for behavioral and emotional problems, including alcoholism. Research has helped guide the design of prevention and intervention programs aimed at reducing this risk. Currently, most such programs for COA's use a short-term, small-group format, often conducted within schools. Broad-based community programs are another promising option, but have not been sufficiently studied. Generally, interventions include alcoholism education, training in coping skills and social competence, social support, and healthy alternative activities. Increased interaction between basic research and intervention may lead to improved services for COA's.
Brief alcoholic screening and intervention for college students. A harm reduction approach
Dimeff LA, Baer JS, Kivlahan DR, Marlatt GA.
(1999)
BASICS, Brief Alcohol Screening and Intervention of College Students: A Harm Reduction Approach, is a preventive intervention for college students 18 to 24 years old. It targets students who drink alcohol heavily and have experienced or are at risk for alcohol-related problems such as poor class attendance, missed assignments, accidents, sexual assault, and violence. BASICS is designed to help students make better alcohol-use decisions based on a clear understanding of the genuine risks associated with problem drinking. The program is conducted over the course of two brief interviews that prompt students to change their drinking patterns. The first interview focuses on introducing the student to the program, assessing the student's level of risk of alcohol-related problems, and obtaining the commitment to monitor drinking in the interval between the two sessions. The second interview is a feedback interview in which the student is given a personalized feedback sheet containing information on the frequency of drinking, quantity of alcohol consumed, estimates of typical and highest-reported blood-alcohol content, and comparisons with student drinking norms. In addition, the student is provided with information about risks associated with drinking and myths about alcohol use, and receives advice on how to drink safely. The program's style is empathetic, not confrontational or judgmental, and aims to (1) reduce alcohol consumption and its adverse consequences, (2) promote healthier choices among young adults, and (3) provide important information and coping skills for risk reduction.
OUTCOMES
Participants at the University of Washington who received BASICS demonstrated a significantly greater deceleration of drinking rates and problems over time in comparison with control participants. These results were sustained at the 2- and 4-year follow-ups.
In an introductory psychology class study of binge drinking, at the 6-week follow-up, the treatment group drank significantly less than the control group on all three indices (number of drinks consumed per week, number of times consuming alcohol in the past month, and frequency of binge drinking in the past month).
Heavier drinking BASICS participants at Auburn University showed significantly greater 3-month decreases in drinking measures and maintained the reduction at 9 months, but other participants showed no improvement.
Fraternity pledges in the treatment condition in a West Coast university showed greater decreases in total weekly alcohol consumption and typical peak blood alcohol concentrations than did pledges in the control condition, but no significant treatment effects were found for quantity of drinks per occasion, frequency of alcohol consumption, or alcohol problems.
Among a sample of athletes enrolled in a public northeastern and northwestern university, BASICS significantly lowered the levels of peak blood alcohol concentration as well as the numbers of drinks consumed on a typical weekend during the first year of college. The program appeared to work somewhat better in combination with a parent-based intervention.
Significant Program Effects on Risk and Protective Factors:
Perceptions of typical student drinking was found to mediate the treatment effect on drinking outcomes (number of drinks consumed per week, number of times consuming alcohol past month, and past month frequency of binge drinking) (Borsari and Carey, 2000).
RACE/ETHNICITY/GENDER DETAILS
The program applies to all youth, but the samples of college students likely include few minorities. The program is equally effective for both genders.
Brief alcoholic screening and intervention for college students. A harm reduction approach
Dimeff LA, Baer JS, Kivlahan DR, Marlatt GA.
(1999)
This instructive manual presents a pragmatic and clinically proven approach to the prevention and treatment of undergraduate alcohol abuse. The BASICS model is a nonconfrontational harm reduction approach that helps students reduce their alcohol consumption and decrease the behavioral and health risks associated with heavy drinking. Including numerous reproducible handouts and assessment forms, the book takes readers step by step through conducting BASICS assessment and feedback sessions. Special topics include the use of DSM-IV criteria to evaluate alcohol abuse, ways to counter student defensiveness about drinking, and obtaining additional treatment for students with severe alcohol dependency.
Brief family intervention effects on adolescent substance initiation: school-level growth curve analyses 6 years following baseline.
Spoth R, Redmond C, Shin C, Azevedo K.
(2004)
This study examines the effects of 2 brief family-focused interventions on the trajectories of substance initiation over a period of 6 years following a baseline assessment. The 2 interventions, designed for general-population families of adolescents, were the 7-session Iowa Strengthening Families Program (ISFP) (Molgaard & Spoth, 2001) and the 5-session Preparing for the Drug Free Years Program (PDFY) (Catalano, Kosterman, Haggerty, Hawkins, & Spoth, 1999). Thirty-three rural public schools were randomly assigned to the ISFP, the PDFY, or a minimal-contact control condition. The authors evaluated the curvilinear growth observed in school-level measures of initiation using a logistic growth curve analysis. Alcohol and tobacco composite use indices--as well as lifetime use of alcohol, cigarettes, and marijuana--and lifetime drunkenness, were examined. Significant intervention-control differences were observed, indicating favorable delays in initiation in the intervention groups.
Brief report: Behavioral adjustment of siblings of children with autism.
Hastings RP.
(2003)
Existing research studies have shown mixed results relating to the impact upon children of having a sibling with a disability. However, siblings of children with autism may be more at risk than siblings of children with other disabilities. In the present study, data were gathered on 22 siblings of children with autism. These children were rated by their mothers as having more behavior problems and fewer prosocial behaviors than a normative sample. Analysis of variables predicting sibling behavioral adjustment revealed that boys with siblings who have autism, and also those younger than their sibling with autism, engaged in fewer prosocial behaviors. Psychological adjustment of mothers (stress) and the child with autism (behavior problems) were not predictive of sibling behavioral adjustment.
Brief Report: Family-Based Group Intervention for Yong Siblings of Children with Chronic Illness and Developmental Disability
Lobato, Debra, J. & Kao, Barbara, T.
(2005)
Objective To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). Methods Forty-three healthy siblings (ages 4–7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. Results Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. Conclusions Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.
Brief Strategic Family Therapy versus community control: engagement, retention, and an exploration of the moderating role of adolescent symptom severity
Coatsworth JD, Santisteban DA, McBride CK, Szapocznik J.
(2001)
This study extends a program of research investigating the effectiveness of Brief Strategic Family Therapy to engage and retain families and/or youth in treatment. The study contrasted Brief Strategic Family Therapy (BSFT) with a Community Comparison (CC) condition selected to represent the common engagement and treatment practices of the community; 104 families were randomly assigned to BSFT or CC. Results indicate that families assigned to BSFT had significantly higher rates of engagement (81% vs. 61%), and retention (71% vs. 42%). BSFT was also more effective than CC in retaining more severe cases. Post hoc analyses of treatment effectiveness suggest that BSFT was able to achieve comparable treatment effects despite retaining more difficult cases. We discuss these results from a public health perspective, and highlight the study's contribution to a small but growing body of literature that suggests the benefits of a family-systems paradigm for engagement and retention in treatment.
Brief Strategic Family Therapy versus community control: engagement, retention, and an exploration of the moderating role of adolescent symptom severity
Coatsworth JD, Santisteban DA, McBride CK, Szapocznik J.
(2001)
This study extends a program of research investigating the effectiveness of Brief Strategic Family Therapy to engage and retain families and/or youth in treatment. The study contrasted Brief Strategic Family Therapy (BSFT) with a Community Comparison (CC) condition selected to represent the common engagement and treatment practices of the community; 104 families were randomly assigned to BSFT or CC. Results indicate that families assigned to BSFT had significantly higher rates of engagement (81% vs. 61%), and retention (71% vs. 42%). BSFT was also more effective than CC in retaining more severe cases. Post hoc analyses of treatment effectiveness suggest that BSFT was able to achieve comparable treatment effects despite retaining more difficult cases. We discuss these results from a public health perspective, and highlight the study's contribution to a small but growing body of literature that suggests the benefits of a family-systems paradigm for engagement and retention in treatment.
Brief Symptom Inventory: Administration, Scoring and Procedures Manual
Derogatis, L. R.
(1993)
Bringing birth-related paternal depression to the fore
Schumacher, M., Zubaran, C. & White, G.
(2008)
OBJECTIVES:
Maternal postpartum depression is a prevalent health disorder with important consequences to the family and child development. Research evidence demonstrates that fathers can also suffer from psychological distress in the postpartum period and that paternal depression has a detrimental effect on the child's behavioral and emotional development. This study aims to review the current literature available about birth-related paternal depression.
METHOD:
A literature search from 1980 to 2007 was conducted through Medline electronic database, using the following Mesh terms: postpartum, postnatal, depression, fathers and paternal. Studies on maternal postpartum depression that examined issues related to paternal depression were also selected.
RESULTS:
Understanding about paternal depressive disorders during the postnatal period has advanced considerably in the last decade. Various studies demonstrate that birth-related paternal depression is a significant problem and closely associated with maternal depressive symptoms. Children of depressive fathers are also at risk for emotional and behavioral problems.
CONCLUSIONS:
Men may suffer from psychological distress after childbirth and birth-related paternal depression is not a rare phenomenon. Since this disorder, also called 'paternal postpartum depression', presents potential deleterious effects for the child, an increased level of public health awareness and scientific interest is warranted. In addition, a more detailed assessment of fathers during the postnatal period is recommended, especially when their partners are also depressed, so that the condition will be promptly recognized and treated.
Broschyr om Startväska för AKK från Habilitering och Hälsa i Stockholm
StAKK
(2014)
Brukare och anhöriga om kvalitet i äldreomsorgen : Kvalitetsbarometern 1998, 1999, 2002, 2004 och 2005
Engström, B.
(2006)
Brukares och anhörigas syn på autonomi och bemötande inom äldreomsorgen
Jormfeldt, M.
(2002)
Brukarinflytandets förändringspotentialer
Steinholz Ekekrantz, Lena
(2005)
Brukarmakt – i teori och praktik
Karlsson, Magnus & Börjeson, Martin
(2011)
Brukarmakt i teori och praktik fördjupar, problematiserar och breddar diskussionen om brukarnas inflytande i människovårdande verksamheter. Utgångspunkten är det socialpsykiatriska området, men boken ger redskap för att förstå brukarmakt i vidare mening inom socialtjänst, vård och omsorg.
Brukarnas makt och delaktighet diskuteras i relation till begrepp som demokrati, medborgarskap och sociala rättigheter, liksom till evidensbaserat socialt arbete. Historiska beskrivningar och teori kompletteras med exempel från praktiken. Även brukarorganisationernas roll analyseras.
Boken är avsedd som kurslitteratur vid utbildningar med inriktning mot vård, omsorg och socialt arbete, men kan också användas av anställda inom offentlig sektor och engagerade i ideella organisationer och föreningar.
Brukarmedverkan i fokus
Andersson, E.-L.
(2005)
Bråd död när patienten drabbats av stroke : vårdares och närståendes upplevelser
Rejnö, Å.
(2012)
A large number of people die from stroke every year, many of them suddenly and unexpectedly as a result of acute stroke. Sudden and unexpected death influences the next of kin and carers as well as the care given to the patients but has not previous been studied within the context of stroke. Aim: The overall aim of the thesis was to describe how carers and next of kin experience patients' death when the patient has been afflicted by stroke. Methods: In the thesis an interpretive qualitative approach has mainly been used. The studies (I-V) have emerged from one another as in a hermeneutic design. An inductive design (I, II, IV, V) and a deductive design (III) have been used. Data were collected with individual interviews (I, III, IV) and individual interviews together with a form (III). Focus group interviews have also been used (II). Participants have been carers on stroke units; ten registered nurses (I) and nineteen respective fifteen members of stroke teams; physicians, registered nurses and enrolled nurses (II, III) together with twelve next of kin to eight patients (IV, V). For analysis of data mainly interpretive methods were utilized; hermeneutic textual interpretation (I), interpretive content analysis (II) and a combined qualitative and quantitative content analysis (III). In addition narrative thematic analysis (IV) and narrative structural analysis (V) were also used. Results: Unexpected sudden death when the patient has been afflicted by stroke can be understood as the unexpected force that intervenes without the patient, the next of kin or the carers being prepared (I). The sudden onset puts the carers in ethically demanding situations through the demands of immediate caring for the patient and also the support the next of kin needs, required by the urgent incident (I - III). The ethical problems became most evident in information, decisions about care and caring, together with support for the next of kin (II). The carers did not use ways of handling ethically problematic situations in the same way as they would have preferred. Mutual trust, both within the teams and with the next of kin constitutes the core for the carers ways of handling the urgent situation and the ethical problems guided by putting what's best for the patients first (III). The studies with the next of kin reveal how complex and elusive the situation might be perceived. The next of kin's experiences of the unexpected sudden death were marked by the uncertainty in the situation and to be left to the mercy of the unexpected (IV). The attention of the next of kin was clearly directed to the patient to the extent that they even forgot themselves and their own needs. The urgency shows itself as influencing the way the next of kin experienced time, how their attention was directed during vigil but it also affected their memory so it behaved in a betraying and contradictory way (IV). Conclusion: Through the results death caused by acute stroke emerge as unexpected sudden death. Unexpected sudden death shows as death calling for urgent actions, brings a potential power to violate the dignity of the afflicted, creating ethical problems that the carers have to deal with and have the power to completely invade the next of kin's present life. The unexpected sudden death brings with it an element of uncertainty that all involved in the situation, the patient, their next of kin and the carers have to address themselves to. Bereavement counselling could be a way to support the next of kin. The methods of this thesis have given knowledge of narrative structure and how it can be utilized to develop stories could be used as a tool for caregivers support the next of kin. Keywords: carers, combined qualitative and quantitative content analysis, content analysis, dignity, hermeneutic textual analysis, narratives, next of kin, qualitative methods, sudden and unexpected death, uncertainty, stroke, stroke team
Bröderna Lejonhjärta, Bok från 6år
Astrid Lindgren. Bilder Ilon Wikland
(1973)
Nangijala, där det ännu är lägereldarna och sagornas tid, det är dit man kommer när man dör. Det berättar Jonatan för sin bror Skorpan som ligger hemma i köket och hostar och är rädd för att dö. Men Jonatan säger att han inte behöver vara rädd, för de kommer att ses i Nangijala. Astrid Lindgrens saga om bröderna Lejonhjärta är en klassisk berättelse om liv och död, syskonkärlek och mod. Kapitelbok från 6 år.
Buller om huller i Mamma Grå
Hedberg, Jessica
(2018)
Sammanfattning
Mamma är sig inte lik. Hon fräser, blir lätt arg och är alltid trött. Hon har blivit sjuk och behöver vila. Det är liksom huller om buller i huvudet på henne. I berättelsen får vi följa barnen Maxi och Lilla Lo som försöker förhålla sig till sin mammas mående. Är det deras fel att mamma är sjuk? Ska klumpen i magen någonsin försvinna? Det här är en berättelse som börjar i grått, men hur slutar det?
Burden and health in relatives of persons with severe mental illness: a Norwegian cross-sectional study
Weimand, B., Hedelin, B., Sällström, C., & Hall-Lord, M.
(2010)
Burden in Schizophrenia Caregivers: Impact on Family Psychoeducation and Awerness of Patient Suicidality
McDonnell, G. Michael, Short, A. Robert, Berry, M. Christopher & Dyck, G. Dennis
(2003)
Family caregivers of persons with schizophrenia and other psychotic disorders experience high levels of burden. Although a number of patient and caregiver predictors of burden have been identified, little research has investigated the contributions of patient depression, suicidal ideation, and substance abuse. In addition, family psychoeducation interventions have reduced patient symptoms, as well as inpatient treatment utilization; however, it is not known whether or not these interventions reduce family burden. This study- investigated predictors of family burden and tested to what degree multiple family group treatment (MFGT), relative to a standard-care condition, was associated with reduced family burden. Participants were 90 outpatients with a diagnosis of schizophrenia or other psychotic disorders, and their caregivers who were enrolled in a 2 year psychoeducation intervention. The best set of predictors of burden, identified by stepwise linear regression, was young patient age, awareness of patient's suicidal ideation, and family resources. These variables accounted for 32% of the total variance in burden. Findings suggest that caregiver's awareness of patient's suicidal ideation; not patient's report of suicidal ideation; and that patient age not duration of the illness, were significant, independent predictors of burden. When compared to a standard-care condition over 2 years, MFGT did not reduce family caregiver burden. Discussions focus on the relationship between burden and its predictors, and possible reasons why MFGT did not decrease burden. Modifications are proposed that may increase the impact of MFGT.
Burden of Caregivers of Patients With Bipolar Affective disorders
Bauer, R., Gottfriedsen, G.-U., Binder, H., Dobmeier, M., Cording, C., Hajak, G., & Spiessl, H.
(2012)
Thirty-two problem-oriented interviews with caregivers of patients with bipolar affective disorders were analyzed using content analysis. The 722 statements of caregivers about their experiences of subjective burden because of the illness of their family members were summarized in 49 global statements and correlated by factor analysis to 10 types of burden. In particular, patients' noncompliance as well as the helplessness of the caregivers in interaction with the (changing) depressive and manic symptoms of the ill family members emerged as serious burdens on the caregivers. Whereas female caregivers suffered more from problems regarding quality of relationship with the patient, male caregivers experienced more constraints on their own autonomy, uncertainty concerning their judgment of patients' capacity, and uncertainty because of the changing symptoms of illness. The findings of this study highlight that an appreciation of caregivers' own consternation and information about how best to handle the (uncooperative) behavior of the patient should be taken into account in psychoeducational groups as well as in the daily work routine of professionals.
Burden of informal care giving to patients with psychoses: a descriptive and methodological study
Flyckt L, Löthman A, Jörgensen L, Rylander A, Koernig T.
(2013)
Background:
There is a lack of studies of the size of burden associated with informal care giving in psychosis.
Aims:
To evaluate the objective and subjective burden of informal care giving to patients with psychoses, and to compare a diary and recall method for assessments of objective burden.
Method:
Patients and their informal caregivers were recruited from nine Swedish psychiatric outpatient centres. Subjective burden was assessed at inclusion using the CarerQoL and COPE index scales. The objective burden (time and money spent) was assessed by the caregivers daily using diaries over four weeks and by recall at the end of weeks 1 and 2.
Results:
One-hundred and seven patients (53% females; mean age 43 ± 11) and 118 informal caregivers (67%; 58 ± 15 years) were recruited. Informal caregivers spent 22.5 hours/week and about 14% of their gross income on care-related activities. The time spent was underestimated by two to 20 hours when assessed by recall than by daily diary records. The most prominent aspects of the subjective burden were mental problems.
Conclusion:
Despite a substantial amount of time and money spent on care giving, the informal caregivers perceived the mental aspects of burden as the most troublesome. The informal caregiver burden is considerable and should be taken into account when evaluating effects of health care provided to patients with psychoses.
Keywords: Informal care giving, schizophrenia, subjective burden, objective burden, diary method, recall method
Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia‐spectrum disorders: A qualitative study
Knock J, Kline E, Schiffman J, Maynard A, Reeves G.
(2011)
Aim: The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders. Methods: Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview. Results: The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. Results also suggested high levels of burden for caregivers concerning difficulties with mental health services. Conclusion: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.
Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia‐spectrum disorders: A qualitative study
Knock J, Kline E, Schiffman J, Maynard A, Reeves G.
(2011)
Aim: The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders.
Methods: Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview.
Results: The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. Results also suggested high levels of burden for caregivers concerning difficulties with mental health services.
Conclusion: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.
By their own young hands: Delibirate self-harm and suicid ideas.
Hawton K, Rodham K, Evans E.
(2006)
Self-harm in adolescents is an increasingly recognized problem, and there is growing awareness of the important role schools and health services can play in detecting and supporting those at risk. By Their Own Young Hand explores the findings of the first large-scale survey of deliberate self-harm and suicidal thinking in adolescents in the UK, and draws out the implications for prevention strategies and mental health promotion.
Six thousand young people were asked about their experiences of self-harm, the coping methods they use, and their attitudes to the help and support available. The authors identify the risk and protective factors for self-harm, exploring why some adolescents with suicidal thoughts go on to harm themselves while others do not, what motivates some young people to seek help, and whether distressed teenagers feel they receive the support they need. By Their Own Young Hand offers practical advice on how schools can detect young people at risk, cope with the aftermath of self-harm or attempted suicide, and develop training programmes for teachers. It also examines the roles of self-help, telephone helplines, email counselling, and walk-in crisis centres.
Packed with adolescents' own personal accounts and perspectives, this accessible overview will be essential reading for teachers, social workers and mental health professionals.
Bygga och använda språk : Bliss i AKK
Heister Trygg, Boel
(2009)
Boken presenterar blissanvändare i olika åldrar och på olika språkliga nivåer. Den vill ge inspiration att prova blisspråket också där det inte är alldeles givet. Författaren försöker bland annat att ge svar på frågor som: Varför bliss? Hur ser blisspråket ut? Hur väljer man symboler och bygger upp en blisstavla?
Bästa i främsta rummet. FN:s konvention om barnets rättigheter i Sverige
SOU
(1998)
Can I tell you about Bipolar Disorder? A Guide for Friends, Family and Professionals
Mainstone-Cotton Sonia
(2018)
Läsålder
6-9 år
Illustratör/Fotograf Jon Birch
If a grownup you love has bipolar disorder, what does that mean? In this friendly guide, 11-year-old Josh tells all about his dad's bipolar, including what mental illness is, and how it can affect patients and their families. The guide explains in child-friendly terms how different types of bipolar affect people's feelings and behaviour. It is a comforting book that prepares young readers for the hard parts of knowing someone with bipolar, while communicating that bipolar is nothing to be afraid or ashamed of. Providing an excellent starting point for discussion both at home and in the classroom, it also includes a helpful list of recommended sources for additional support.
Can rehabilitation in the home setting reduce the burden of care for the next-of-kin of stroke victims?
Björkdahl A, Nilsson AL, Sunnerhagen KS.
(2007)
BACKGROUND:
More evidence of the efficacy of caregiver interventions is needed. The aim of this study was to evaluate whether counselling in the home setting reduces the caregiver burden.
METHODS:
Thirty-six patients after stroke, median age 53 years, with a close family member, were selected for an evaluation of the burden of care and 35 participated. They were part of a randomized controlled trial, comparing rehabilitation in the home setting with outpatient rehabilitation. In the home setting, counselling about the stroke and its consequences was included. Assessments with the Caregiver Burden scale were made at 3 weeks, 3 months and one year after discharge.
RESULTS:
The burden of the 2 groups did not differ. After the intervention, there was a tendency to a lower burden for the home setting. The burden for the home setting was then unchanged from 3 weeks to 1 year, while outpatient rehabilitation showed a reduced burden over time. For the home setting, significant correlations to activity level were seen after the intervention.
CONCLUSION:
A positive effect of counselling was seen, as the home setting burden tends to be lower after the intervention, while outpatient rehabilitation seems to adjust with time. The results suggest that counselling reduces burden and the remaining burden is associated with the patient's ability.
Cancer, a relational disease: exploring the needs of relatives to cancer patients
Sandén Ulrika, Nilsson Fredrik, Thulesius Hans, Hägglund Maria, Harrysson Lars
(2019)
Abstract [en]
Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients.
Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory.
Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative's safety net. A percieved inability to improve their loved one's well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death.
Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient's experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.
Care allowances for the frail elderly and their impact on women care-givers
Jacobzone, S. and J. Jensen
(2000)
Care allowances for the frail elderly and their impact on women care-givers.
Jacobzone, S., Jensen, J.
(2000)
Care as a good for social policy
Daly, M.
(2002)
Care as employment and welfare provision - child care and elder care in Sweden at the dawn of the 21st century.
Szebehely, M.
(2005)
Care coordination: integrating health and related systems of care for children with special health care needs
Committee on Children With Disabilities
(1999)
Care coordination is a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care. Care coordination often is complicated because there is no single entry point to multiple systems of care, and complex criteria determine the availability of funding and services among public and private payers. Economic and sociocultural barriers to coordination of care exist and affect families and health care professionals. In their important role of providing a medical home for all children, primary care pediatricians have a vital role in the process of care coordination, in concert with the family.
According to the Maternal and Child Health Bureau (MCHB) definition, which was later adopted by the American Academy of Pediatrics (AAP), "children with special health care needs are those who have or are at increased risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond that required by children generally."1 Primary care pediatricians and other professionals caring for children with special health care needs generally acknowledge the importance of and the need for coordination of care. New initiatives from health care reform and managed care are reshaping the traditional direct clinical care role of the primary care pediatrician to include gatekeeper and coordination roles. This transition to managed systems of care from traditional fee-for-service care has important implications for aspects of care coordination. The primary care pediatrician may be required to assume even greater responsibility for providing care coordination for their patients under capitated arrangements. This policy statement reviews the importance of the primary care pediatrician's role in care coordination in the context of the medical home.
Care management and care provision for older relatives amongst employed informal care-givers
Rosenthal C, Martin-Matthews A, Keefe J.
(2007)
Care management among informal caregivers includes care-related discussions with other family members or the care recipient about the arrangements for formal services and financial matters, doing relevant paperwork, and seeking information. The study examines the prevalence of this type of care , the circumstances under which it occurs, its variations by caregiver characteristics and its impact on the carers, using a sub-sample of 1847 full-time employed individuals who were assisting older relatives drawn from the Canadian 'Work and Family Survey'. The analysis shows that managerial care is common, distinct from other types of care, and that most care-givers provide both managerial and direct care. Care management includes both the orchestration of care and financial and bureaucratic management. Providing managerial care generates stress amongst women and interferes with work amongst men.
Care Management's Challenges and Opportunities to Reduce the Rapid Rehospitalization of Frail Community-Dwelling Older Adults
Golden AG, Tewary S, Dang S, Roos BA.
(2010)
Community-based frail older adults, burdened with complex medical and social needs, are at great risk for preventable rapid rehospitalizations. Although federal and state regulations are in place to address the care transitions between the hospital and nursing home, no such guidelines exist for the much larger population of community-dwelling frail older adults. Few studies have looked at interventions to prevent rehospitalizations in this large segment of the older adult population. Similarly, standardized disease management approaches that lower hospitalization rates in an independent adult population may not suffice for guiding the care of frail persons. Care management interventions currently face unique challenges in their attempt to improve the transitional care of community-dwelling older adults. However, impending national imperatives aimed at reducing potentially avoidable hospitalizations will soon demand and reward care management strategies that identify frail persons early in the discharge process and promote the sharing of critical information among patients, caregivers, and health care professionals. Opportunities to improve the quality and efficiency of care-related communications must focus on the effective blending of training and technology for improving communications vital to successful care transitions.
Care revolutions in the making? A comparison of cash-for-care programmes in four european countries
Timonen, V., Convery, J., & Cahill, S.
(2006)
Care robot orientation: What, who and how? Potential users’ perceptions
Johansson-Pajala, Rose-Marie ; Thommes, Kirsten ; Hoppe, Julia A ; Tuisku, Outi ; Hennala, Lea ; Pekkarinen, Satu ; Melkas, Helinä ; Gustafsson, Christine
(2020)
Abstract:
Exploring the specific field of care robot orientation generates many questions regarding the meaning, content and how it should be conducted. The issue is important due to the general digitalisation and implementation of welfare technology and care robots. The aim of the study was to explore perceptions of care robot orientation from the potential users' perspective. Data were collected by focus group interviews in Finland, Germany and Sweden. In all three countries, potential user groups were represented: older adults, relatives, professional caregivers and care service managers. A qualitative descriptive method was used for analysing data. The data revealed three aspects of care robot orientation: (1) What care robot orientation is, (2) Who needs it and by Whom it should be given and (3) How it should be performed. The need for care robot orientation is general in society. In the absence of knowledge about care robots, it is nearly impossible to know what to ask for or actually seek information about. Therefore, care robot orientation must be founded on agile implementation planning for care robots, with a firm basis in trustworthy knowledge and information and respecting individuals' wishes. This also gives rise to an ethical challenge when care robots are offered to people having reduced decision-making ability (dementia, cognitive impairment), along with the issue of who then should make the decision. The mapping of the What, Who/Whom and How aspects of care robot orientation offers a foundation for the creation of orientation models, which might facilitate structured and goal-oriented care robot orientation strategies.
Care trajectories in the oldest old. Diss.
Ernsth, Bravell, M.
(2007)
This thesis demonstrates relations among health, social network, ADL and patterns of care in the oldest old guided by a resource theoretical model.The analyzed data are based on two studies: the Nona study, a longitudinal study of 157 individuals aged 86 to 94 years, and the H70 study, a longitudinal study of 964 individuals aged 70 at baseline. Data were collected by interviews and to some extent in the H70 study, medical exams and medical records.The results demonstrate that perceived resources seem to affect patterns of care to a higher extent than the more objective resources in the sample of the oldest old. On the other hand, sociodemographic variables such as gender, marital status and SES, in addition to the more objective resources of having children nearby and the number of symptoms of illness predicted institutionalization during a subsequent 30-year period from the age of 70. The proportion of elderly persons' institutionalization was further significantly higher than that generally found in cross-sectional studies. ADL was one of the strongest predictors for both use of formal care and institutionalization in both samples, indicating an effective targeting of the formal care system in Sweden. The care at end of life in the oldest old is challenged by the problems with progressive declines in ADL and health, which makes it hard to fit in the dying oldest old in the palliative care system. There is a need to increase the knowledge and the possibility for care staff to support and encourage social network factors and for decision-making staff to consider factors beyond ADL.
Caregiver -- Who Copes How?
Chappell, N. L., & Dujela, C.
(2009)
Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies and change in coping strategy over a 1-year period. In particular the differential importance of caregiver capacity (such as social support, health, and personality) compared with careload (such as hours of caregiving and need of the care recipient) is examined within a path model. Data came from a purposive sample of caregivers experiencing heavy demands. Overall, problem-focused coping is used more often than emotion-focused coping (either positive or negative) or seeking social support, but caregivers use all types simultaneously. Caregiver capacity, specifically neuroticism, is the strongest predictor of problem-focused coping with those high in neuroticism less likely to use this strategy. High neuroticism also predicts less use overall and negative emotion-focused coping strategies. Few significant predictors emerge of change; those that did were caregiver capacity, not careload variables. The use of all coping strategies, except seeking social support which remained stable, decreased over a 1-year period.
Caregiver Assessment
Feinberg, L. F.
(2008)
Caregiver burden among three-generation immigrant families in Israel
Slonim-Nevo V, Cwikel J, Luski H, Lankry M, Shraga Y.
(1995)
Caregiver burden and coping in schizophrenia and bipolar disorder: A qualitative study
Ganguly, K. K., R. K. Chadda, et al.
(2010)
Caregivers of people with severe mental disorders suffer from having a considerable burden as a result of their caregiving role. They develop different kinds of coping strategies to deal with this burden. There has been a lack of qualitative studies on caregiver burden and coping, especially from non-Western populations. The present paper reports findings of a longitudinal study of burden and coping in a group of caregivers of people suffering from schizophrenia and bipolar affective disorder (BAD). Qualitative assessments were done by focus group discussions (FGDs) with the caregivers over a period of about a year. Caregivers reported burden in different areas including effects on family functioning, social isolation, financial problems, and health. They used multiple coping strategies including developing compassion in caregiving, hoping for a better future, developing faith in God, participating in religious practices, and helping others with a similar problem.
Caregiver burden and coping: A prospective study of relationship between burden and coping in caregivers of patients with schizophrenia and bipolar affective disorder
Chadda, R. K., T. B. Singh, et al.
(2007)
Introduction: Caregivers of patients of schizophrenia and bipolar affective disorder (BAD) experience considerable burden while caring their patients. They develop different coping strategies to deal with this burden. Longitudinal studies are required to assess the relationship between caregiver burden and coping. Aim: The present study was conducted to assess relationship between burden and coping in caregivers of clinically stable patients with schizophrenia and BAD. Method: One hundred patients each of schizophrenia and BAD attending a psychiatric outpatient setting and their caregivers were followed up for a period of 6 months. Burden and coping strategies were assessed in the caregivers at baseline, and after 3 and 6 months using the Burden Assessment Schedule (BAS) and Ways of Coping Checklist--Hindi Adaptation (WCC--HA). Results: Burden remained stable over 6 months and was comparable in the two groups of caregivers. Caregivers from both the groups were found to use problem focused coping strategies more often than seek social support and avoidance strategies. Scores on avoidance type of coping showed a positive correlation with the total burden scores and a number of burden factors. Conclusions: Caregivers of patients of schizophrenia and BAD face similar levels of burden and use similar types of coping methods to deal with it. Relationship between caregiver burden and coping is quite complex.
Caregiver burden as a short-term predictor of weight loss in older outpatients suffering from mild to moderate Alzheimer's disease: a three months follow-up study
Bilotta, C., Bergamaschini, L., Arienti, R., Spreafico, S., & Vergani, C.
(2010)
Abstract
OBJECTIVE:
To determine if caregiver burden (CB) can be an independent predictive factor of weight loss at three months in older outpatients suffering from mild to moderate Alzheimer's disease (AD) and living at home.
METHOD:
Prospective cohort study involving 105 subjects aged 70 years or more, affected by mild to moderate AD and living at home with the assistance of at least one informal caregiver, who consecutively underwent a multidimensional geriatric assessment. Body weight was re-evaluated at a three month follow-up, from December 2008 to April 2009. Those who experienced a weight loss greater than 3% of the baseline weight constituted the 'weight loss' group.
RESULTS:
Out of the 97 older participants attending follow-up, 22 (23%) had experienced a weight loss > 3%. At a multivariate logistic regression analysis, a greater CB at baseline, defined by a score of the caregiver burden inventory scale in the highest tertile (i.e. 36+ out of 96), turned out to predict weight loss at three months (odds ratio (OR) 13.93, 95% confidence interval (CI) 1.91-101.33, p = 0.009), independently of other factors associated with the 'weight loss' group such as age, functional dependence and the risk of malnutrition estimated by means of the Mini Nutritional Assessment Short Form (MNA-SF).
CONCLUSION:
For older outpatients affected by mild to moderate AD and living at home, CB constitutes a risk factor for weight loss even in the short-term, independently of other factors such as the risk of malnutrition assessed by means of the MNA-SF.
Caregiver Confidence: Does It Predict Changes in Disability Among Elderly Home Care Recipients?
Li, L. W. and S. J. McLaughlin
(2012)
PURPOSE OF THE STUDY: The primary aim of this investigation was to determine whether caregiver confidence in their care recipients' functional capabilities predicts changes in the performance of activities of daily living (ADL) among elderly home care recipients. A secondary aim was to explore how caregiver confidence and care recipient functional self-efficacy jointly influence changes in ADL performance over time. DESIGN AND METHODS: The sample included 5,138 elderly recipients of home and community-based long-term care in Michigan. ADL performance was assessed multiple times over a 2-year period. Caregiver confidence was measured at baseline with a single item. Multilevel modeling was used to estimate the effect of caregiver confidence on changes in ADL performance over time, controlling for baseline self-efficacy, ADL performance, and other factors that might confound the relationship. Based on caregiver confidence and elder self-efficacy, we created 4 groups of elder caregiver dyads to explore the combined effect of caregiver and elder confidence on change in ADL performance. RESULTS: Elders whose caregivers were confident in their capacity for greater functional independence experienced greater improvement in ADL performance than those whose caregivers were not confident. Elders in dyads in which both members expressed confidence experienced more improvement in ADL performance than those in dyads in which either one or both members lacked confidence. IMPLICATIONS: Interventions to strengthen caregivers' confidence in their care recipients' functional capabilities may slow functional losses among home care elders. Additional research is needed to confirm these findings and identify the factors that influence caregiver confidence.
Caregiver credits in France, Germany, and Sweden: Lessons for the United States
Jankowski, J.
(2011)
Recently, analysts in the United States (US) have proposed adopting caregiver credits, or pension credits, provided to individuals for time spent out of the workforce while caring for dependent children and sick or elderly relatives. The primary objective of these credits, used in almost all public pension systems in the European Union, is to improve the adequacy of old-age benefits for women whose gaps in workforce participation typically lead to fewer years of contributions, lower lifetime average earnings, and consequently lower pensions. This article examines caregiver credits in the context of future reforms to the US Social Security system, with attention given to the adequacy of current spouse and survivor benefits and how changing marital patterns and family structures have increased the risk of old-age poverty among certain groups of women. It then analyzes caregiver credit programs in selected countries, with particular focus on design, administration, and cost.
Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross-sectional study.
Sandstedt P., Littorin S., Cröde Widsell G., Johansson S., Gottberg K., Ytterberg C., Olsson M., Widén Holmqvist L., Kierkegaard M.
(2018)
AIMS AND OBJECTIVES: This study set out to describe caregiver experience,
health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis and to explore factors associated with caregivers' health-related quality of life and life satisfaction.
BACKGROUND: Knowledge about factors related to caregivers' health-related qualityof life and life satisfaction is important for identification of those at risk for ill health and for development of support and care. DESIGN: A cross-sectional study. METHODS: Forty-nine informal caregivers and 49 patients were included.
Standardised and study-specific questionnaires were used for data collection on caregiver experience (Caregiver Reaction Assessment), health-related quality of life (EuroQol Visual Analogue Scale, SF-36), life satisfaction (Life Satisfaction
Checklist) and caregiver- and patient-related factors. Associations were explored
by regression analyses. RESULTS: Both positive and negative caregiver experience were reported, and health-related quality of life and life satisfaction were below national reference values. Positive experience was associated with better and negative with worse mental health-related quality of life. Factors related to informal caregivers (sex, age, living conditions) and patients (anxiety and/or depression) were related to caregivers' health-related quality and life satisfaction.
CONCLUSION: The results indicate the need to consider the individual caregiver's experience when planning services, care and support. It is important to adopt person-centred care, not only for patients but also for their informal caregivers, as factors related to both parties were associated with the informal caregivers' health-related quality of life and life satisfaction.
RELEVANCE TO CLINICAL PRACTICE: Our study suggests that promoting positive experience and providing services and support to reduce negative aspects of caregiving might be important strategies for healthcare personnel to improve informal caregivers' health.
Caregiver Participation in Hospice Interdisciplinary Team Meetings via Videophone Technology: A Pilot Study to Improve Pain Management
Parker Oliver, D., Demiris, G., Wittenberg-Lyles, E., Porock, D., Collier, J., & Arthur, A.
(2010)
Abstract
This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.
Caregiver Participation in Hospice Interdisciplinary Team Meetings via Videophone Technology: A Pilot Study to Improve Pain Management
Parker Oliver, D., Demiris, G., Wittenberg-Lyles, E., Porock, D., Collier, J., & Arthur, A.
(2010)
Abstract
This article discusses a pilot study testing a videophone intervention enabling hospice patients and caregivers to remotely participate in interdisciplinary team meetings, with the goal of improving pain management. The aim of this study was to test potential outcome measures and combine the data with qualitative observations to assess the overall feasibility and promise of the intervention. The outcomes evaluated included hospice patient quality of life, caregiver perceptions of pain medications, caregiver quality of life, and caregiver anxiety related to team participation. The pilot study showed that caregiver participation in the care planning process is feasible and may change caregiver perceptions of pain medication, potentially improving pain management for hospice patients.
Caregiver responsiveness to the Family Bereavement Program: what predicts responsiveness? What does responsiveness predict?
Schoenfelder, E.N., Sandler, I.N., Millsap, R.E., Wolchik, C.B., Berkel, C., & Ayers, T.S.
(2013)
Abstract
The study developed a multidimensional measure to assess participant responsiveness to a preventive intervention and applied this measure to study how participant baseline characteristics predict responsiveness and how responsiveness predicts program outcomes. The study was conducted with caregivers who participated in the parenting-focused component of the Family Bereavement Program (FBP), a prevention program for families that have experienced parental death. The sample consisted of 89 caregivers assigned to the intervention condition in the efficacy trial of the FBP. Positive parenting, caregiver depression, and child externalizing problems at baseline were found to predict caregivers' use of program skills outside the group, and more child internalizing problems predicted more positive perceptions of the group environment. Higher levels of skill use during the program predicted increased positive parenting at the 11-month follow-up, whereas positive perceptions of the group environment predicted decreased caregiver depressive symptoms at follow-up. Caregiver skill use mediated the relation between baseline positive parenting and improvements in positive parenting at 11-month follow-up, and skill use and perceived group environment mediated changes in caregiver depression from baseline to 11-month follow-up.
Caregiver strain in Parkinson's disease and the impact of disease duration
Lökk ,J.
(2008)
Abstract
AIM:
The task of managing care for patients with Parkinson's disease (PD) often falls upon a family member taking on the role as a caregiver (CG) implying a burden on these CGs. The aim of this study was to evaluate CG strain of PD patients with regarding different psychosocial domains and the influence of PD/CG duration of PD.
METHODS:
A cross-sectional telephone interview survey of 451 CGs randomly selected from the registry of the Swedish Parkinson's Disease Association. A structured questionnaire covering sociodemographic, psychosocial, and general CG factors, sleep and depression of the CG as well as issues of the patient's disease was used by 4 independent interviewers blinded to the study objective.
RESULTS:
Four hundred and four of 451 (90%) CGs responded with a mean age of 68.5 years with 62% females. The results were stratified in 3 groups with regard to disease duration of the PD patient, 0-4, 5-10, and >11 years, respectively. General health condition of the CGs was regarded satisfactory independent of disease duration. Insufficient sleep and disease related stress were considered to be prominent in 36% and 61%, respectively, being significantly more prominent in the group with the longest disease duration. Decreased mood was reported in 31% with no difference between groups. More than 30% of CGs also experienced daily problems with tiredness and sleep disturbance; 27% hypertension; 17% muscle strain, headache and fatigue; and 14% gastro-intestinal problems most items regardless of disease duration. The most troublesome symptoms of the patients to the CGs were reported to be the motor dysfunction (58%). More than half experienced little or no understanding of their situation.
CONCLUSION:
CGs are afflicted with strain and burden in many psychosocial and somatic domains despite satisfactory general wellbeing independent of disease duration. The longer disease duration, and, accordingly CG duration, the more impact on certain domains of CG burden, however, with little understanding of their situation. These findings should be given greater consideration when organizing and planning for PD care in the health care system and the community.