Bibliotek

Sedan 1980-talet har den offentligt finansierade äldreomsorgen minskat dramatiskt samtidigt som andelen äldre i befolkningen har ökat kraftigt. Andelen äldre, 80 år och äldre, som får offentlig äldreomsorg har minskat från 62 procent 1980 till 37 procent 2006. Under 2000-talet har samhällets kostnad för äldreomsorg fortsatt att minska, både i faktisk kostnad och som andel av BNP. Antalet anställda i äldreomsorgen har också minskat. I takt med att den offentligt finansierade äldreomsorgen har dragit sig tillbaka har de äldres anhöriga tagit ett större omsorgsansvar. Framför
allt har de äldres döttrar ökat sina insatser sedan 1990-talet. Data från SCB för 2010 visar att anhörigomsorgen fortsätter att öka även under de senaste fem åren. I rapporten redovisas vem som hjälper hemmaboende äldre, 75 år eller äldre, som behöver hjälp med åtminstone en av insatserna städning, tvätt, matinköp, matlagning eller bad/dusch. Ungefär hälften av gruppen får hjälp av kommunen. Det är samma nivå som i slutet av 1980-talet, men fler äldre med stora hjälpbehov bor hemma idag än för tjugo år sedan. Två tredjedelar får den här hjälpen, alltså hjälp med städning, tvätt, matinköp, matlagning eller bad/dusch, av en nära anhörig eller vän som de inte bor med. Motsvarande siffra i slutet av 1980-talet var 40 procent. Nästan en tredjedel av de hemmaboende äldre, 75 år och äldre, med hjälpbehov får den här hjälpen av en dotter. Ungefär 14 procent får hjälpen av en son. Anhörigomsorgen är inte gratis, varken för de som ger omsorg eller för samhället. Bland medelålders kvinnor som ger omfattande omsorg till närstående äldre står 40 procent utanför arbetskraften jämfört med 30 procent av medelålders kvinnor utan omsorgsansvar. Uppskattningsvis 100 000 personer anger vård av anhörig som främsta skäl till att de gått ned i arbetstid eller helt slutat arbeta. Utöver att dessa personer själva får lägre arbetsinkomst när de jobbar deltid eller helt står utanför arbetskraften, så förlorar samhället i uteblivna skatteintäkter. Kommunal menar att de utmaningar som Sverige står inför, bristande
arbetskraftsutbud och välfärdens framtida finansiering, hänger ihop. För att fler ska kunna jobba mer behövs en välfungerande social infrastruktur med barnomsorg och äldreomsorg. När fler jobbar mer ökar även skatteintäkterna så vi har råd med offentligt finansierade välfärdstjänster av hög kvalitet.

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)

Under Rubellasyndrom-epidemien i 1960'erne blev mange børn født døve, blinde og udviklingshæmmede. Forfatteren prøver i denne bog at komme nærmere en forståelse af disse menneskers virkelighed, en verden uden ord, men ikke uden kommunikation. Bogen er et resultat af forfatterens undersøgelser af to børn født døvblinde og udviklingshæmmede

Vad tycker människor med psykiska funktionsnedsättningar och en komplex livssituation om att få ett varaktigt boende i form av gruppbostad med särskild service?

"Vår berättelse närmar sig sitt slut. Och vår figur klamrar sig fast på vrakets krutdurk på det öppna havet. Molnen hopar sig. Från och med nu blir allt han skriver korta fragment som han ristar in i tunnans trä."

Efter den hyllade debutboken I kroppen min kommer nu Kristian Gidlunds avslutande texter från bloggen med samma namn. Texterna återspeglar Kristians tankar och känslor under de sista sju månaderna av hans liv. Boken innehåller också Emma Svenssons bilder från fotoutställningen om Kristian Gidlund.

Han hade ett sjömanshjärta i sitt bröst. Han sökte äventyret. Han älskade livet. Kristian Gidlund, författaren, journalisten och musikern avled den 17 september 2013. Han blev 29 år gammal.

"Kristian Gidlund gjorde verkligen skillnad, helt på egen hand. Ingen som hörde hans röst, precisionen och modet i varenda formulering, kunde låta bli att stanna upp, lyssna och långsamt förändras. Han lärde oss att dö men också att leva." Åsa Beckman Dagens Nyheter

"När jag läste hans betraktelser ville jag bara dansa i regnet, bada i en ljummen sjö, älska, gråta, skratta, känna, och rida rätt ut i skogen." Sanna Lundell Aftonbladet

"Hans lyriska formuleringar blir till trollformler som genererar liv bara man läser dem med tillräcklig intensitet. Naturligtvis är det oerhört tragiskt och tårdrypande. Men här finns också värme och humor som på samma gång balanserar upp tragiken och förstärker den."Norrköpings Tidningar

"Han var just så varm, just så orädd, just så klok, just så stark, just så vacker - och omöjlig att inte älska... Den svidande skönheten i de texter han med sån poetisk stringens, och sån osentimental men likafullt hjärtskärande öppenhjärtighet, formulerade." Per Bjurman Aftonbladet

"Styrkan i Gidlunds eviga berättande var inte att döden lurade runt hörnet, utan att hans texter genomsyrades av en oerhörd livslust. Han påminde ständigt om att han levt ett rikt liv. "Glöm aldrig det", skrev han i den poetiskt tecknade boken." Sydsvenska Dagbladet

"Sällan har någons skrivande varit mer meningsfullt än Kristian Gidlunds." Östgöta Correspondenten

OBJECTIVE:
To use a multi-method approach to examine the association of parental ADHD and gender with observed and self-reported parenting beliefs and behaviors.

METHOD:
Seventy-nine mother-father dyads completed measures of child behavior and impairment, parenting beliefs and behaviors, and self- and partner ratings of ADHD symptoms and functional impairment. Forty-five parents also completed structured parent-child interactions.

RESULTS:
A hierarchical linear model suggests impairment in functional domains may be associated with negative emotions about parenting and less effective parenting strategies. For fathers, greater severity of partner-reported symptoms of ADHD may be associated with greater frequency of negative talk during parent-child interactions.

CONCLUSION:
Findings suggest that higher levels of parental ADHD symptoms and functional impairment may be associated with reported beliefs and behaviors related to parenting. Differences emerged among mothers' and fathers' use of parenting strategies when self- and other-report of ADHD symptoms and impairment were assessed.

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

I sinnenas värld är en serie böcker utgivna av SIH läromedel. De innehåller förslag på aktiviteter och övningar som stimulerar alla olika sinnen. Illustrerade av Eva Skåreus.

The impact of borderline personality disorder on family members of persons with BPD is articulated best by family members themselves. Despite an increase in research demonstrating more hopeful outcomes for the diagnosis, many mental health professionals remain unaware of recent advances in BPD treatments and therapies. This lack of awareness has dramatic consequences not only for patients, but for their families as well. This chapter describes the personal experiences of 12 family members with relatives with BPD. Expressed in one-hour semi-structured interviews, the family members' individual accounts centered on five key areas of their lives with their ill relative: (1) difficulty accessing current evidence-based knowledge about BPD and treatments; (2) a stigmatizing health care system; (3) prolonged hopelessness; (4) shrinking social networks; and (5) financial burdens. To improve the quality of services available to family members affected by BPD, social workers must educate themselves about the availability of professionals trained in BPD, BPD-specific treatment options, and BPD information resources. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

PURPOSE:
The purpose is to analyze the incidence and costs of accidents among Attention-Deficit/Hyperactivity Disorder (ADHD) patients.

METHODS:
The analysis relied on administrative medical, pharmaceutical, and disability claims for a national manufacturer's employees, spouses, dependents, and retirees (n > 100,000). Accidental injuries were identified using ICD-9 codes for injuries or poisoning treatment. ADHD sample consists of individuals with at least one claim for ADHD during 1996-98 (NADHD = 1308), which was compared with a matched control sample. In addition to descriptive statistics, multivariate analysis involving logistic regression was used to model the probability of having an accident claim in 1998. This probability was estimated for the whole population, for adults alone, for children (under age 12 years), and for adolescents (age 12-18 years). We also estimated a generalized estimation equation (GEE) model to account for the possibility of multiple accident claims for a single patient.

RESULTS:
ADHD patients had a greater probability of having at least one accident claim than their controls for children (28% vs. 18%), adolescents (32% vs. 23%), and adults (38% vs. 18%). Although ADHD patients' costs were greater than their controls for adults ($483 vs. $146), there was no difference for children or adolescents. However, among patients with accident claims, the average number of accident claims was similar for both groups (3.6 vs. 3.5) and costs were not statistically different. The multivariate analysis confirms this utilization pattern: the odds of having an accident for ADHD patients were 1.7 times greater than for controls.

CONCLUSIONS:
ADHD was a significant predictor of having an accident claim. However, for people with an accident claim, ADHD patients and controls had a similar number of accident claims and costs.

This article provides a summary of different strategies used to support the complex communication needs of high school students with severe intellectual disabilities and additional impairments who are included in general education classrooms. The premise of this paper is that students with severe cognitive disabilities benefit from inclusive educational opportunities at the high school level and can acquire critical communication skills, given the necessary support. High school students typically communicate for a variety of purposes and use a variety of different modes of communication. This variety in purpose and mode extends to students who do not use speech and have other severe disabilities. The role that peers can play in the development of communication for high school students is described, as well as the need to critically evaluate the learning environment in order to identify communication opportunities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Background—Spousal caregivers of cancer patients suffer psychological and physical burdens that may affect their risk of subsequently developing coronary heart disease and stroke.

Methods and Results—Cancer patients were identified in the Swedish Cancer Registry, and information on their spouses was retrieved from the Swedish Multi-Generation Register. Follow-up of caregivers was performed from the date of the first diagnosis of cancer in their spouses through 2008. Standardized incidence ratios were calculated for spousal caregivers of cancer patients compared with those without an affected spouse. After the cancer diagnosis in wives, the risks of coronary heart disease, ischemic stroke, and hemorrhagic stroke in husbands were 1.13 (95% confidence interval [CI], 1.10–1.16), 1.24 (95% CI, 1.21–1.27), and 1.25 (95% CI, 1.18–1.32), respectively. The corresponding risks in wives with an affected husband were 1.13 (95% CI, 1.10–1.16), 1.29 (95% CI, 1.26–1.32), and 1.27 (95% CI, 1.19–1.34). The increases were consistent over time and were more pronounced if the spouse was affected by a cancer with a high mortality rate, such as pancreatic and lung cancers.

Conclusions—Spousal caregivers of cancer patients have increased risks of coronary heart disease and stroke that persist over time. Clinical attention should be paid to spousal caregivers, especially those caring for cancer patients with high mortality rates.

For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.

For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.

Abstract

Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.

Vad finns det för stöd till familjen när ett barn eller en ung person drabbas av psykisk
ohälsa? Vad säger forskningen om att engagera hela familjen i behandlingen?
Kunskapsöversikten tar upp frågor som dessa och visar hur familjer med barn och unga
med psykisk ohälsa kan ha det i Sverige idag. Författaren har gått igenom ett stort antal
vetenskapliga artiklar och genomgången visar att det finns starkt vetenskapligt stöd för
att hela familjen ska engageras i behandlingen, t ex i form av familjeterapi, familjefokuserad omvårdnad eller familjestödsprogram. Kunskapsöversikten visar också att familjerna ibland har behov av stöd och avlastning, framför allt om barnet eller ungdomen har allvarliga beteendestörningar.

Många svenska barn far illa idag. Den ojämförligt största gruppen är barn till alkoholmissbrukare. Ändå är både barnen och deras föräldrar i många avseende glömda. I boken beskrivs både barnens och föräldrarnas livssituation. Föräldraskapet är en stark kraft, som måste tillvaratas för att stödja dessa utsatta familjer. Både barn och föräldrar behöver bli sedda. För att det skall bli möjligt krävs bättre kunskapet och mer samarbete mellan mödra- och barnhälsovård, barnomsorg, skola, socialtjänst och missbruksvård. I bokens andra del finns konkreta förslag på hur man kan arbeta för att stödja både barn och föräldrar i familjer med missbruk, men även i andra utsatta familjer. Boken vänder sig både till studerande och yrkesverksamma. Tredje reviderade upplagan.

The aim of this dissertation was to gain knowledge about the experiences of siblings and parents of children with autism and learning difficulties, about what brought about the decision to apply for a place in a group home for their child and what it meant for the parents that their child had moved. A further aim was to gain knowledge about what it is like to work in a group home for children with autism as well as to investigate the work atmosphere in group homes for adults with autism. The dissertation includes four studies: the first comprises interviews with parents (n = 10) before their children have moved as well as when their children have lived for two years in the group home, the second comprises interviews with siblings (n = 14), the third comprises interviews with staff (n = 10) who have worked with the five children in a newly opened group home after one year and after four years, the fourth comprises a study with a questionnaire focusing on the views of staff (n = 152) on the work atmosphere in 58 group homes for adults with autism. The results from the interviews show that the parents had experienced grief over not having a child that was healthy and could develop normally. Before applying for a place in a group home they had been in a situation of great stress and were overloaded. Their children had very extreme deviant behaviour that they were not always able to control. This led to the families becoming increasingly isolated, the siblings being affected and several parents feeling that they were completely worn out. The results of the interviews carried out two years after their child had moved to a group home revealed that this gave the whole family feelings of release and relief. The parents also experienced an ethical dilemma consisting on the one hand of an ethical duty to care for their own child and on the other hand a feeling of relief when passing over responsibility to others. The results from the interviews with the siblings before the children moved, show that these siblings took responsibility in a precocious way. The siblings were often exposed to frightening and deviant behaviour.This led to several siblings feeling anxious and insecure at home. Having a brother or sister with autism led to relationships with friends being affected negatively. The siblings chose not to bring friends home because of the child's occasionally violent and destructive behaviour. When the staff had worked for one year in the group home it was seen that they were greatly involved in the children and their families. They had developed a very supportive work atmosphere among the staff but experienced stress that was triggered by violence. Focus group interviews with staff after four years of work revealed that four of the ten staff had left the job. Those who were still there, both the original and newly appointed staff desired more support and in-house training, particularly in coping with the then teenage children's violent behaviour. The staff who participated in the study of the work atmosphere in group homes for adults with autism described the atmosphere as being generally more creative and innovative than stagnating. There were two different types of group homes, those providing living accommodation only and those combining accommodation with daytime activities, the former were rated as having a better work atmosphere than the latter, which showed higher degree of conflict and lower degrees of motivation and challenge.

OBJECTIVE:
The housing preferences of persons with severe mental illness living in three types of community residences were examined, as were their perceptions of problems in these settings and the relationships between clients' and family members' housing preferences and perceptions of problems.
METHODS:
A closed-ended questionnaire was developed to gather demographic and diagnostic data and information about housing preferences and seven categories of service-related problems. It was completed by clients who lived in group settings with 24-hour on-site staff, in supported housing with on-site visits by staff, and in homes or apartments with no on-site professional services. Questionnaires were returned by 129 family members and 180 clients.
RESULTS:
Clients who lived in group settings were significantly more likely to be older, less educated, unemployed, and diagnosed as having schizophrenia than clients in other settings. Although a larger proportion of family members than clients preferred housing with more support, for both families and clients a statistically significant association was found between current and preferred residence. A strong and significant correlation was found between clients' and family members' perceptions of problems, which included stress on the family and clients' social isolation and relapse to illness. For clients who lived independently, a significantly greater proportion of both clients and families reported that social isolation was a problem.
CONCLUSIONS:
Although supported housing works well for some individuals, a continued need exists for an array of housing with varying levels of structure. The results suggest that clients and families identify the same problems as priorities.

This paper describes a research-based program designed to promote resilience of parentally-bereaved children and their bereaved surviving parent. A contextual resilience model is described as the conceptual foundation of the program. The program is designed to enhance specific parenting and coping skills and to help caregivers and children accomplish goals they set for themselves at the outset of the program. The content of the twelve-sessions and the approach to teaching and supporting parents work on their program and personal goals are described. Evaluation of the program using a randomized experimental design indicates that the program is effective in promoting resilient outcomes of children and of the bereaved parent six-years following their participation in the program.

BACKGROUND:
Studies that differentiate among diagnoses have detected divergent results in the experience of family burden.
AIM:
This study aimed to investigate differences in family burden and participation in care between relatives from subgroups of psychoses, affective disorders and 'other diagnoses', and between different subgroups of relatives.
METHOD:
In a Swedish longitudinal study performed in 1986, 1991 and 1997, 455 close relatives of both committed and voluntarily admitted patients were interviewed concerning different aspects of their burden, need for support and participation in the actual care situation.
RESULTS:
Relatives showed burdens in several of the aspects measured. In only one aspect of the investigated burden items was a difference found between different diagnostic subgroups. The relatives of patients with affective disorder more often had to give up leisure time. However, spouses showed more burdens and more often experienced sufficient participation in the patient's treatment than other subgroups while siblings more seldom experienced burdens and more seldom felt that their own needs for support had been met by the psychiatric services. Within each diagnostic subgroup there were differences between subgroups of relatives.
CONCLUSION:
Being a close relative, and living together with a severely mentally ill person in an acute situation, is one factor of importance for experiencing burden and participation in care, contradicting the conventional wisdom which differentiates between diagnoses.

The changes in family burden and participation in care of relatives to both voluntarily and compulsorily admitted patients were investigated as part of a longitudinal study of the quality of the mental health services in a Swedish county performed between 1986 and 1997. The relationship between the relative's mental health and family burden, participation in care and need of own support was also investigated. The results showed similar and high levels of burden and a non-sufficient participation in care in both periods investigated despite the ongoing changes in the delivery of psychiatric services and a change in the compulsory legislation in Sweden during the period. More relatives experienced an own need of care and support from the psychiatric services in the 1997 investigation. Relatives who experienced mental health problems of their own more often experienced other forms of burden, experienced less participation in the patient's treatment and also more often had own needs of care and support. It is concluded that interventions in families where relatives experience mental health problems will be useful, since a well-functioning network around the mentally ill person has shown to reduce relapse.

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.

AIM: This study aimed to describe and compare urban and rural family caregivers'
reactions to caring for a relative with dementia and to examine the associations
between caregiving and socio-demographic factors.
BACKGROUND: Most studies on family caregivers' experiences caring for older
people with dementia have been conducted in urban areas, and little is known
about the experiences of family caregivers living in rural areas.
DESIGN: A cross-sectional study design was used.
METHODS: A total of 102 caregivers (response rate 85%) from urban (n=57) and
rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and
demographic information. Data were analysed using descriptive and inferential
statistics and linear regression models.
RESULTS: Overall, family caregivers reported high satisfaction even if they also
reported high impact on finances and daily living. Rural caregivers experienced a
higher negative impact on finances but reported more support from family members
than urban caregivers. Age, gender and relationship were significantly associated
with four of the five CRA subscales. Educational level and geographical setting
were not associated with any of the CRA subscales.
CONCLUSIONS: The results of the study raise questions about the financial
situation of older female caregivers and on the expectations of built-in family
structures in urban and rural areas. Further studies focusing on the meaning and
constitution of a family would help us to understand how these factors influence
family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE: To provide person-centred care and to avoid
stereotyped caregiving, a better picture of traditions in family caregiving can
improve a more differentiated and appropriate professional caregiving pliable
with the cultural context in which it is carried out.

Many people with dementia are cared for in their homes by family caregivers. As
the dementia progresses, admission of the family member to a nursing home becomes
inevitable. The aim of this meta-ethnographic study was to describe caregivers'
experiences of relinquishing the care of a family member with dementia to a
nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo,
between the years 1992 and 2012, was performed, and 10 qualitative articles,
based on 180 family caregivers' experiences, were included. The family
caregivers' described their experiences as a process that went from being
responsible for the decision, through living with the decision, adjusting to a
new caring role and having changed relationships. They felt unprepared and lonely
with these changes. They experienced loss, guilt and shame, but also feelings of
relief. Their roles in the nursing home environment were to make sure that the
individual needs of the person with dementia were respected and to monitor the
quality of care. They wished to maintain their relationship with the person with
dementia and to establish meaningful relationships with caring staff. The process
of relinquishing care is similar to a crisis process, which starts with a turning
point, followed by a coping face and finally the outcome of the process. The
adaption to the new situation can be facilitated if the family caregivers are
recognised as partners in the care of the person with dementia. The family
caregivers' unique knowledge of their relatives' previous life story should be
acknowledged in both care planning and daily care. Welcoming family caregivers to
regular meetings with staff can contribute to increase the feeling of
partnership. Offering staff clinical supervision could be one way of preparing
them to deal with the emotional strain reported by family caregivers.

Abstract
BACKGROUND:
Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. OBJECTIVE: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness.
DESIGN: This is a qualitative interview study using both focus group interviews and individual interviews. SETTING/SUBJECTS: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed.´MEASUREMENTS: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. RESULTS: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. CONCLUSIONS:
Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member

One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.

One of the most common diseases occurring in old age groups is dementia. Caring for a relative with dementia poses many challenges for family caregivers and they bear the main responsibility for the persons with dementia living at home. The overall aim of this thesis, which consists of five community-based studies, was to explore experiences of burden and satisfaction among family caregivers (FC) looking after persons with dementia. Implicit in this aim was the assumption that the result of this research would support development of education programs for caregivers of individuals with dementia in the community. FC of persons with dementia living in either group living care or nursing home still expressed feelings of burden several years after relocation. The caregivers also reported insufficient information and support, and the grown-up children who are low-income earners are those who are affected most ? especially with regard to strain and disappointment. FC with a higher sense of coherence and fewer symptoms reported significantly less burden. Sense of coherence seems to modify the extent of burden reported among FCs, irrespectively of their health. Stressors as measured on the caregiver burden scale and satisfaction can co-exist and allow assessment of different aspects of the caregiver's situation. Psychosocial intervention with a clearly defined aim, which combines giving information and holding conversation groups, can have significant positive effects on the burden experienced by FCs of persons with dementia. The best effect of intervention on caregivers in a controlled study design was found early in the progression of dementia. These findings emphasize the importance of identifying FCs early in the caring process, to maximize their well-being.

The purpose of this study was to examine if psychosocial intervention for family caregivers made any differences in describing symptoms of dementia in the persons they cared for. The study population comprised family caregivers of persons aged 70 years and older receiving social services and diagnosed with dementia disorders. A group of 129 family caregivers underwent psychosocial intervention including education, information, and provision of a support group, while 133 family caregivers did not and these formed the control group. Family caregivers were followed-up every 6 months for a total of 18 months. They rated intellectual, emotional, and activity of daily living (ADL) functions in persons with dementia using the Gottfries-Bråne-Steen scale (GBS-scale). Family caregivers who underwent psychosocial intervention rated the intellectual and emotional symptoms of dementia significantly higher 6 months later compared to controls and the effect was sustained during the 18-month follow-up irrespective of relationship and education. Most notably, decrease in function of recent memory, ability to increase tempo, long-windedness, distractibility, and blunting were better identified. Our findings suggest that the family caregivers who underwent psychosocial intervention achieved better understanding of different symptoms and the behaviors of dementia. These findings may explain earlier findings of positive effects after psychosocial intervention on family caregivers' sense of burden, satisfaction, and ability to delay nursing home placement.

AIM:
This study aimed to describe and compare urban and rural family caregivers' reactions to caring for a relative with dementia and to examine the associations between caregiving and socio-demographic factors.
BACKGROUND:
Most studies on family caregivers' experiences caring for older people with dementia have been conducted in urban areas, and little is known about the experiences of family caregivers living in rural areas.
DESIGN:
A cross-sectional study design was used.
METHODS:
A total of 102 caregivers (response rate 85%) from urban (n=57) and rural (n=46) areas completed the Caregiver Reaction Assessment (CRA) Scale and demographic information. Data were analysed using descriptive and inferential statistics and linear regression models.
RESULTS:
Overall, family caregivers reported high satisfaction even if they also reported high impact on finances and daily living. Rural caregivers experienced a higher negative impact on finances but reported more support from family members than urban caregivers. Age, gender and relationship were significantly associated with four of the five CRA subscales. Educational level and geographical setting were not associated with any of the CRA subscales.
CONCLUSIONS:
The results of the study raise questions about the financial situation of older female caregivers and on the expectations of built-in family structures in urban and rural areas. Further studies focusing on the meaning and constitution of a family would help us to understand how these factors influence family caregiving both in rural and urban areas.
IMPLICATIONS FOR PRACTICE:
To provide person-centred care and to avoid stereotyped caregiving, a better picture of traditions in family caregiving can improve a more differentiated and appropriate professional caregiving pliable with the cultural context in which it is carried out.

AIMS:
This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles.
METHODS:
Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers' consequences, the Utrecht Coping List (UCL) to measure caregivers' coping styles, and the 12-item General Health Questionnaire (GHQ-12) to measure caregiver distress. Scale (sub)scores were calculated and relationships between the results were explored.
RESULTS:
Caregiver consequences were found to be limited, although approximately 30% reported distress. Male caregivers used a more avoiding coping style and undertook activities to provide diversion. Female caregivers used a less active approach and sought less social support. Correlations were found between the IEQ overall score and its subscales 'tension' and 'worrying' and the UCL subscales 'palliative reaction pattern' and 'passive reaction pattern'. Distress appears to occur more often in caregivers who report more consequences, tend to use a more avoiding coping style, and have a more passive reaction pattern.
CONCLUSIONS:
Clinicians should assess symptoms of caregiver distress. When caregiver distress is noticed, efforts should be undertaken to support the caregiver and teach them skills to cope effectively with the consequences they experience in order to stay well.

Adult children are a significant contingent of elder care providers; a number of these individuals simultaneously care for children of their own while coping with caregiving commitments. Unfortunately, there is a paucity of information regarding the caregiving impact on these children and young adults. Moreover, the possible positive consequences of caring for an impaired elder are rarely mentioned. The current study was undertaken to examine the potential positive caregiving experiences of adolescents and their perceptions of relational enhancement as a result of caregiving. Twenty adolescents aged 14-18 were interviewed and asked a series of semistructured questions concerning satisfaction related to caregiving. To be included, respondents had to be a child, grandchild, or niece/nephew of an Alzheimer's (or Alzheimer's Type Dementia) patient cared for by the adolescent's immediate family. Employing features of content analysis methodology, all interviews were audiotaped and transcribed verbatim. The results merged into four primary categories: 1) increased sibling activity/sharing; 2) greater empathy for older adults; 3) significant mother-adolescent bonding and 4) peer relationship selection and maintenance. The implications for future research and practice are discussed.

PURPOSE:
To examine the support required by family carers for stroke survivors.
METHODS:
Forty-two family carers were recruited for surveys of needs, knowledge, satisfaction, and competence in caring before and 4 - 6 weeks after discharge from an Acute Stroke Unit (ASU).
RESULTS:
Information deficits about dealing with psychological, emotional, and behavioural problems and local service information were priorities before and after discharge. Younger female carers (under 56 years) were least satisfied with communication with ASU staff. Face to face contact was valued. After discharge younger female carers, particularly of non-White ethnic groups, reported lower levels of competence in caring and higher burden. Knowledge of stroke risk factors was low in all groups. High satisfaction with treatment and therapy in the ASU, was not transferred to the community. Carers reported feeling alone and described uncoordinated services.
CONCLUSIONS:
Carers are able to anticipate and prioritise their needs, value communication with staff and involvement with discharge-planning, but particular difficulties were experienced by younger female carers and those from non-White ethnic groups. This requires particular attention when developing targeted interventions for family carers from a mixed ethnic community. In-depth and longitudinal studies are needed to detail psychosocial needs and guide practice particularly amongst non-White family carers.

Structural equation modeling was used to test a theoretical model in which family cohesion and family reframing coping were hypothesized as mediators between family drinking problems, multiple risk factors, negative life events, and child mental health (conduct disorder, depression, anxiety) in two-parent families. Family cohesion mediated the relationships of family drinking problems and negative life events to child conduct disorder and depression. Negative life events mediated the relationships of family drinking problems and family multiple risk to child conduct disorder. Family reframing coping did not function as a mediator nor was it related to child mental health when other factors were considered simultaneously. Results indicate that increasing family cohesion and reducing sources of stress within the family (negative life events) represent promising areas of interventions for children with problem-drinking parents.

This study assessed changes in family members who participated in Family Connections, a 12-week manualized education program for relatives of persons with borderline personality disorder (BPD). Family Connections, led by trained family members, is based on the strategies of standard Dialectical Behavior Therapy (DBT) & DBT for families. The program provides (a) current information & research on BPD, (b) coping skills, (c) family skills, & (d) opportunities to build a support network for family members. Forty-four participants representing 34 families completed the pre-, post-, & 6-month postbaseline self-report questionnaires. Analyses employing hierarchical linear modeling strategies showed significant reductions in grief & burden, & a significant increase in mastery from pre- to post-group assessment. Changes were maintained at 6 months post baseline. 1 Table, 19 References. Adapted from the source document.

This chapter describes the Family Connections (FC) program, a 12-week, two-hour, interactive, manualized, education/skills training course for relatives of persons with borderline personality disorder (BPD) that is co-led by trained family members. It explicates the training of co-leaders, the registration process for participants, a detailed description of the curriculum's six modules, and consideration of the on-going challenges faced by participants after the program ends. The introduction describes historical development of the program. Subsequent sections are organized into two parts: each opens with a segment that presents key ideas, which is followed by 'Leader Observations' the reflections of a seasoned leader. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580

BACKGROUND:
Family context can affect children's vulnerability to various stresses, but little is known regarding the role of family variables on children's reactions to natural disaster. This prospective study examined the influence of predisaster observed parenting behaviors and postdisaster parental stress on young children's distress following an earthquake.

METHODS:
Participants were 117 two-parent families with a child age 4-5 at the initial assessment. The families experienced different degrees of impact from the earthquake. Pre-earthquake family context comprised observations of parents' positive and negative behaviors during a parent-child play task. Eight months after the earthquake, mothers reported symptoms of parental stress and children's distress.

RESULTS:
Earthquake impact and children's distress symptoms were moderately correlated (r = .44), but certain pre-earthquake parental behaviors moderated the relationship. The dose-response association between earthquake impact and children's symptoms did not hold for families in which fathers showed high levels of negative behaviors with daughters, or mothers showed low levels of positive behaviors with sons. In addition, results consistent with full mediation for boys (and partial mediation for girls) indicated that 86% of the total effect of earthquake impact on boys' distress (and 29% on girls' distress) occurred through the mediator of reported parental stress.

CONCLUSIONS:
These findings demonstrate that young children's responses to an abrupt, negative environmental event, such as an earthquake, are influenced in part by the nature of the parent-child relationship prior to the event as well as by the responses parents exhibit following the event.

Aphasia affects functional activities and participation in social roles years after onset. Some group and individual programs have reported success in improving social activities and perceived wellness. These programs typically last several weeks or months. A short, 2-day seminar style program designed for adults with chronic aphasia and their families is described in this report. Six-month follow-up data from participant pairs demonstrates a significant improvement in functional activity level, improved knowledge of aphasia, and improved family relationships. Nonparticipant pairs did not demonstrate any changes over the same period. These findings replicate and extend those of a previous study on the same 2-day seminar [Top. Stroke Rehabil. 2 (1995) 53.]. The results of this study demonstrate the important outcomes of even a very brief program designed to address the long-term psychosocial needs of adults living with aphasia and their families. Educational objectives: As a result of this activity, the participant will be able to: (1) describe a brief family education seminar for adults with chronic aphasia; (2) discuss outcomes in family adjustment, community reintegration, and activities of daily living associated with participation in a family education seminar; and (3) evaluate areas of programming and outcomes that should be addressed in future research.

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.

Research shows that living with illness can be a distressing experience for the family and may result in suffering and reduced health. To meet families' needs, family systems intervention models are developed and employed in clinical contexts. For successful refinement and implementation it is important to understand how these models work. The aim of this study was therefore to describe the dialogue process and possible working mechanisms of one systems nursing intervention model, the Family Health Conversation model. A descriptive evaluation design was applied and 15 transcribed conversations with five families were analyzed within a hermeneutic tradition. Two types of interrelated dialogue events were identified: narrating and exploring. There was a flow between these events, a movement that was generated by the interaction between the participants. Our theoretically grounded interpretation showed that narrating, listening, and reconsidering in interaction may be understood as supporting family health by offering the families the opportunity to constitute self-identity and identity within the family, increasing the families' understanding of multiple ways of being and acting, to see new possibilities and to develop meaning and hope. Results from this study may hopefully contribute to the successful implementation of family systems interventions in education and clinical praxis.

Parental depression places offspring at elevated risk for multiple, co-occurring problems. The purpose of this study was to develop and preliminarily evaluate Project Hope, a family intervention for the prevention of both depression and substance use among adolescent-aged children (M = 13.9 years) of depressed parents. The program was created by blending two empirically supported interventions: one for depression and another for substance use. Thirty families were randomly assigned to either Project Hope (n = 16) or a wait-list control condition (n = 14). Pretests, posttests (n = 29), and 5-month follow-ups (n = 28) were conducted separately with parents and youth via phone interviews. Questions asked about the family depression experience, family interactions, family management, coping, adolescent substance use beliefs and refusal skills, adolescent depression, and adolescent substance use. Project Hope was fully developed, manualized, and implemented with a small sample of targeted families. Engagement in the program was relatively high. Preliminary outcome analyses were conducted using 2 (Group) ×3 (Time) analyses of covariance. Results provided some evidence for significant improvements among intervention compared to control participants in indicators of the family depression experience, family management, and coping, and a statistically significant decrease from pretest to posttest in alcohol quantity for intervention compared to control youth. Next steps for this program of research are discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed

This paper describes an intervention study carried out with 45 families (83 children) where one of the parents died, leaving a child or children under 16 years of age. The families were randomly assigned to treatment and control groups, the treatment group being seen by a family therapist for approximately six sessions within 3-5 months of bereavement. All the families were contacted approximately 1 year after and again 2 years after the bereavement and a structured interview was carried out, covering parental health and psychiatric state, the children's health and behaviour, and the death and events surrounding it. At follow-up, there was some indication that the treatment group had benefited from the brief intervention. The implications for practice are discussed.

Objective: The goal of this study was to preliminarily test the efficacy of a telephone intervention, Family Intervention: Telephone Tracking, designed to assist stroke survivors and their primary caregivers during the first 6 months after stroke. Method: Forty-nine stroke survivors and their caregivers were randomly assigned to treatment as usual or treatment as usual plus the telephone intervention. Global outcomes are reported for health care utilization, family functioning, and general functioning. Results: Family and general functioning were positively and significantly changed at 3 and 6 months. Health care utilization was positively and significantly changed at 3 months. Conclusion: Findings suggest that the model has the potential to decrease health care utilization and improve quality of life for stroke survivors and their caregivers. Further study is warranted.