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Vad drömmer barn med funktionshinder om att göra? Leka lekar som alla barn, trots att man inte kan klättra, rida eller gunga. Filmen som är gjord av Pia Winnberg-Lindqvist och Sara Holm är ett komplement till boken med samma namn.
Överförd till dvd 2011
Var så god och sitt!
En bra sittställning för lek, utveckling och gemenskap är inte alltid så enkelt att uppnå. En sjukgymnast och en arbetsterapeut delar med sig av lång erfarenhet från sitt arbete med barn med funktionsnedsättningar. Boken är skriven på ett enkelt språk och är fylld av bilder och praktiska tips. Till boken finns en film med samma titel.
War trauma lingers on: Associations between maternal posttraumatic stress disorder, parent-child interaction, and child development
Maternal traumatization has been proposed as a risk factor for child development, but the mechanisms involved are poorly understood. This study analyzed the interrelations among maternal posttraumatic stress symptoms, parent–child interaction (emotional availability), and infants' psychosocial functioning and development among 49 asylum-seeker and refugee mothers and their children (18–42 months). Measures included assessment of mothers' trauma and comorbid symptoms (Harvard Trauma Questionnaire: R.F. Mollica et al., 1992; Hopkins Symptom Checklist: L. Derogatis, R. Lipman, K. Rickels, E. Uhlenhuth, & L. Covi, 1974), emotional availability within parent–child interaction (Emotional Availability Scales: Z. Biringen, 2008), and infants' psychosocial functioning (Child Behavior Checklist: T.M. Achenbach & L.A. Rescorla, 2000) and development (Bayley Scales of Infant Development: B.F. van der Meulen, S.A.J. Ruiter, H.C. Spelberg, & M. Smrkovsky, 2000). The results show that higher levels of maternal posttraumatic stress symptoms are associated with a higher level of psychosocial problems of infants, but not with delays in their mental or psychomotor development. The results also show that higher levels of maternal posttraumatic stress symptoms are associated with higher levels of insensitive, unstructuring, or hostile, but not intrusive, parent–child interactions. Infants show lower levels of responsiveness and involvement to their traumatized mothers. Parent–child interaction did not function as a mediator between maternal trauma symptoms and infants' psychosocial functioning. Results are discussed in relation to the dyad's regulation of emotions. Results implicate a need to reestablish attunement between traumatized mothers and their nontraumatized children.
War trauma lingers on: Associations between maternal posttraumatic stress disorder, parent-child interaction, and child development.
Maternal traumatization has been proposed as a risk factor for child development, but the mechanisms involved are poorly understood. This study analyzed the interrelations among maternal posttraumatic stress symptoms, parent–child interaction (emotional availability), and infants' psychosocial functioning and development among 49 asylum-seeker and refugee mothers and their children (18–42 months). Measures included assessment of mothers' trauma and comorbid symptoms (Harvard Trauma Questionnaire: R.F. Mollica et al., 1992; Hopkins Symptom Checklist: L. Derogatis, R. Lipman, K. Rickels, E. Uhlenhuth, & L. Covi, 1974), emotional availability within parent–child interaction (Emotional Availability Scales: Z. Biringen, 2008), and infants' psychosocial functioning (Child Behavior Checklist: T.M. Achenbach & L.A. Rescorla, 2000) and development (Bayley Scales of Infant Development: B.F. van der Meulen, S.A.J. Ruiter, H.C. Spelberg, & M. Smrkovsky, 2000). The results show that higher levels of maternal posttraumatic stress symptoms are associated with a higher level of psychosocial problems of infants, but not with delays in their mental or psychomotor development. The results also show that higher levels of maternal posttraumatic stress symptoms are associated with higher levels of insensitive, unstructuring, or hostile, but not intrusive, parent–child interactions. Infants show lower levels of responsiveness and involvement to their traumatized mothers. Parent–child interaction did not function as a mediator between maternal trauma symptoms and infants' psychosocial functioning. Results are discussed in relation to the dyad's regulation of emotions. Results implicate a need to reestablish attunement between traumatized mothers and their nontraumatized children.
Vara anhörig: bok för anhöriga till psykiskt sjuka
Hur är det att vara anhörig till en psykiskt sjuk människa? Var finner jag hjälp och stöd?
Det finns oändliga mängder kunskap, också hos behandlare och ansvariga myndigheter, om hur viktigt det är att lyssna till de anhöriga. Gång på gång betonas vikten av ett gott samarbete mellan psykiatrin och de sjukas sociala nätverk. Ändå fungerar detta samarbete sällan bra i praktiken.
I Vara anhörig beskriver Åsa Moberg, författare till den mycket uppmärksammade Adams bok, med utgångspunkt i enskilda fallbeskrivningar och lokala vårdformer, olika förhållningssätt för patienter, anhöriga och närstående. Här finns också berättelser om nytänkande och fungerande vårdformer.
Depression är den vanligaste psykiska sjukdomen i Sverige.Det är en sjukdom som i hög grad påverkar alla närstående. Förändringar i vården är nödvändiga och för det behövs gemensamma mål. Ändå glöms de anhöriga ofta bort.
Idag tycks de psykiatriska diagnosernas antal tillväxa i ungefär samma takt som mängden människor med psykiska lidanden. Sker allt detta diagnosticerande på bekostnad av det stöd, som behövs för att människor med psykiska funktionshinder och deras anhöriga ska klara vardagen? Det tror Åsa Moberg.
1900-talet var det århundrade när de sjukas, "brukarnas", röster började höras. 2000-talet måste bli den tid när de anhöriga äntligen tas på allvar.
Vardagsteknologi för de allra äldsta
Varieties of familialism
Ways of understanding being a healthcare professional in the role of family member of a patient admitted to hospital. A phenomenographic study
Healthcare professionals' experience of being family member of a patient can contribute to knowledge development and organizational learning in further ways than the experiences of general family members. However, there is little research on healthcare professionals' experience being on 'the other side of the bed'.
OBJECTIVE:
To describe how healthcare professionals understand the role of being a healthcare professional and a family member of a patient admitted to hospital.
DESIGN:
Qualitative with a phenomenographic approach.
SETTING:
Three Swedish hospitals.
PARTICIPANTS:
All healthcare professionals in three hospitals were invited. Twenty-one volunteered for the study and 18 met the inclusion criteria; to have one year of professional experience and to have visited the family member in hospital daily during hospitalization. Family members in maternity or psychiatric care were excluded.
METHODS:
Semi-structured interviews were used for data collection. Transcripts were analyzed with a phenomenographic method to describe variation and commonality in the ways of understanding the phenomenon under study.
RESULTS:
Four dominant ways of understanding the phenomenon were identified; the informed bystander, the supervisor, the advocate and the carer. The four ways of understanding were hierarchically related with "The informed bystander" being least involved in the care of the family member and "The carer" more or less taking over the patient's care because of inappropriate, unsafe or omitted care. Common for all ways of understanding the phenomenon, except "The informed bystander", was the difficult balance between their loyalty toward the family member and their colleagues among the staff. "The informed bystander" and "The supervisor" are ways of understanding the phenomenon under study that, to our knowledge, has not been described before.
CONCLUSIONS:
This study describes how being a family member of a patient can be understood in four different ways when the family member is a healthcare professional. The findings show similarities to previous studies on general family members as well as nurse-family members of patients in critical care. The need for professional communication, support and coordination will be substantially different if the family member understands his/her role as an informed bystander compared to if they perceive themselves as a carer. The role conflict and ambivalence toward building relationships described are aspects that need further exploration, as does the experience of being forced to care for a family member. Our findings contribute with new knowledge developing patient- and family-centered care.
We share the care: Family caregivers' experiences of their older relative receiving home support services.
We, not them and us - a utopia?: Relatives and nursing home staffs views on and experiences with each other
Web-based brief interventions for young adolescent alcohol and drug abusers – a systematic review
Abstract
Background Adolescents' use of alcohol, cannabis and other psychoactive substances has significantly increased in European
countries. Parallel to this web-based screening and brief intervention have been disseminated. An important question is if it is
based on evidence for effect? Therefore, the aim of this review is to evaluate the evidence for effect.
Method A systematic literature search was performed on randomised trials in the following databases: MEDLINE, the Cochrane
Central Register of Controlled Trials (CENTRAL) and EMBASE – supplemented by hand search. The target group of young adolescents
was defined as 16 to 18 years old.
Results Overall, 35 papers were identified as randomised trials on web-based screening and/or intervention concerning alcohol
and drug among young people; however the only identifiable randomised trial to evaluate the young adolescents was a published
protocol describing an ongoing study.
Conclusion Young adolescents might benefit from web-based screening and brief intervention on alcohol and drugs; however
an effects remains to be established in high quality studies.
En sked för morbror Fred
'Jag tror fortfarande inte att jag riktigt vilat färdigt från barndomen. Jag undrar om jag någonsin kommer att göra det. Vila färdigt." Så skriver Jenny Jejlid när hon berättar historien om hur det är att växa upp med ett autistiskt och utvecklingsstört syskon. Idag är hon vuxen och arbetar inom omsorgsvärlden, och ser tillbaka på sin uppväxt som lillasyster till en äldre bror som inte var som andra. Hon berättar om när det onormala blir normalt, och när känslor av kärlek och hat blandas med skam och skuld. Men hon berättar också om vägen framåt, och om känslor av hopp.
Wellbeing among people with dementia and their next of kin over a period of 3 years
Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin's experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004–2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient's state of mind and care provision). Data also consisted of next-of-kin's self reports concerning health, burden and satisfaction. The result showed that patients' state of mind was mainly positive at baseline but a deterioration was seen over time in the patient's mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients' mood and the caregiver's satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins' general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.
Vem ska ta hand om de gamla invandrarna? FoU-rapport 1993:3
Vem ska ta hand om mamma? : Tema : Att vara anhörig
Vem tröstar Ruth? En studie av alternativa driftsformer i hemtjänsten
Vem är bäst : En familjs verklighet i autismens gåtfulla liv
Att få ett autistiskt barn är något av det mest omvälvande man kan uppleva. Livet som Autist skiljer sig så mycket från ett vanligt, vilket även kom att innebära dramatiska förändringar för oss som föräldrar. Det som var så självklart blev nu bergsliknande hinder som skulle ta all vår kraft och energi för att lösa och hitta vägar som fungerar. ?Boken beskriver hur det var att få ett autistisk barn till de utmaningar som ungdomsåren och vuxenlivet förde med sig. Det vi trodde var en manual i uppväxt visade sig vara något helt annat i autismens inneslutna värld. ?Vår son är idag vuxen och vi kan se tillbaka på ett liv full av överraskningar utmaningar och många misslyckanden. Men samtidigt många segrar. Vårt liv fick inte bli isolerad från all det vi ville uppnå tillsammans med våra barn. Autismen fick inte segra, det skulle vara vår tydliga mål, ja livsuppgift. Autism skulle inte vara vår son utan bara en del av honom. Bakom ögonen fann vi en riktig go, glad, kärleksfull och alldeles underbar kille, vi hittade vår son.??Berättelsen börjar en vårdag 1993. En vanlig dag kan det verka som, men denna lördag skulle våra liv förändras för alltid. Det liv vi hade hoppats på skulle nu för alltid vara borta. Vi visste det bara inte då.
Vem är den enskilde i ett gemensamt hem? : en studie av hur biståndshandläggare förhåller sig till anhörigas möjligheter till frivillighet, autonomi och personlig integritet
Martina Takters syfte med avhandlingen är att utforska anhörigas möjligheter till frivilliga val, autonomi och personlig integritet. Detta i samband med en hjälpbehövandes funktionsnedsättning eller sjukdom för att kontextualisera utifrån vilket sammanhang dessa möjligheter ska förstås. Utgångspunkten för studien är biståndshandläggningens praxis i kommunal vård- och omsorg samt biståndshandläggares förhållningssätt till anhöriga. En slutsats är att biståndshandläggarna genom motivationsarbete lägger fokus på den enskilde som sökande part och mottagare för bistånd och att den anhöriges situation inte ges utrymme vid biståndshandläggningen. Det innebär att den enskildes rätt att avstå erbjudna insatser som t.ex. hemtjänst, oavsett behov och social kontext avgränsar den anhöriges möjligheter till frivilliga val, autonomi och personlig integritet. I förlängningen kan det innebära att den anhörige dels får ta ett ansvar för den enskildes situation utan att ha möjlighet att välja detta, och dels att den anhöriges behov osynliggörs. Genom att ansvaret görs till en privat angelägenhet legitimerar det ett tillbakadragande av det offentligas ansvar.
Vems är ansvaret? Om kommunernas stöd till barn som växer upp med missbrukande föräldrar
Verksamhetsberättelse för Kris- och Samtalsteamet, År 2003
Veteranradio [ljudupptagning] : Anhöriggrupper
What about you?
What are families for? On family solidarity and preferences for help
What are motives of family members to take responsibility in palliative cancer care?
Background and aim. Some studies show that the family members willingly take great responsibility in palliative care. However, their motives for doing so have not been much explored and the aim of this study is to investigate that further.
Method. Twenty family members of patients enrolled in palliative care were interviewed in depth. The interviews were taped, transcribed and analysed using a qualitative, hermeneutic method.
Results. Love, attachment and outlook on life were the main reasons for shouldering responsibility. An increased consciousness about precious values deepened relations within the family and resulted in personal growth and constituted strong motivation. The process of responsibility was bi-directional with benefits as well as costs. The assumed responsibility brought with it the need to balance feelings about the impending death including such feelings as grief, fear and resignation with those associated with life. Examples of the latter were efforts to retain any remaining capacities within the dying person's body and mind, to hold onto daily routines and to maintain hope and dignity. An essential part of the responsibility was to preserve meaning and avoid the sense of meaninglessness.
Discussion. The results contribute to an understanding of complex desires, feelings and needs and provide staff with knowledge when supporting families.
What are the risks to children of parental substance misuse?
What are the risks to children of parental substance misuse?
What do people value when they provide unpaid care for an older person? A meta-ethnography with interview follow-up.
What do we know about older former carers? Key issues and themes
Abstract
Despite a significant growth in the number older former family carers, they remain largely invisible in carer-related research and literature. To begin to address this deficit, a four-stage literature review was conducted to identify existing knowledge about older former carers. Narrative synthesis of the findings yielded five themes - the concept of 'older former carer', the legacies of caring, influences on the legacies of caring, conceptualising post-caring and support services for older former carers. Critical analysis of these findings suggests that existing evidence has a number of strengths. It highlights the terminological and conceptual confusion in the field, identifies the profound financial and health-related legacies older former carers' experience, the factors which shape these legacies and some of the complexities of bereavement older former carers face. The support needs of older former carers are also illuminated. However, the field is characterised by key weaknesses. The evidence base is fragmented and uneven. In part this reflects lack of definitional consensus and in part the fact that there is much more evidence about some sub-groups, such as carers of relatives admitted to a care home, than others. Methodology-related weaknesses include small sample sizes and a focus on a single, often condition-specific, group of older former carers. An overarching criticism relates to the narrow conceptual/theoretical purview. As post-caring tends to be viewed as one of the final temporal 'stages' of the carer's 'care-giving career', a bifurcatory model of carer/former carer is created, i.e. that a carer actively provides care and a former carer is no longer caring. This constructs being a former carer - namely formerality - as a single fixed state failing to capture its dynamic and shifting nature and constrains the potential of research to generate new knowledge and extend understanding.
What explains health in persons with visual impairment?
Background
Visual impairment is associated with important limitations in functioning. The International Classification of Functioning, Disability and Health (ICF) adopted by the World Health Organisation (WHO) relies on a globally accepted framework for classifying problems in functioning and the influence of contextual factors. Its comprehensive perspective, including biological, individual and social aspects of health, enables the ICF to describe the whole health experience of persons with visual impairment. The objectives of this study are (1) to analyze whether the ICF can be used to comprehensively describe the problems in functioning of persons with visual impairment and the environmental factors that influence their lives and (2) to select the ICF categories that best capture self-perceived health of persons with visual impairment.
Methods
Data from 105 persons with visual impairment were collected, including socio-demographic data, vision-related data, the Extended ICF Checklist and the visual analogue scale of the EuroQoL-5D, to assess self-perceived health. Descriptive statistics and a Group Lasso regression were performed. The main outcome measures were functioning defined as impairments in Body functions and Body structures, limitations in Activities and restrictions in Participation, influencing Environmental factors and self-perceived health.
Results
In total, 120 ICF categories covering a broad range of Body functions, Body structures, aspects of Activities and Participation and Environmental factors were identified. Thirteen ICF categories that best capture self-perceived health were selected based on the Group Lasso regression. While Activities-and-Participation categories were selected most frequently, the greatest impact on self-perceived health was found in Body-functions categories. The ICF can be used as a framework to comprehensively describe the problems of persons with visual impairment and the Environmental factors which influence their lives.
Conclusions
There are plenty of ICF categories, Environmental-factors categories in particular, which are relevant to persons with visual impairment, but have hardly ever been taken into consideration in literature and visual impairment-specific patient-reported outcome measures.
What I think and feel: a revised measure of children's manifest anxiety
The 1956 adaptation for children of Taylor's Manifest Anxiety Scale, the Children's Manifest Anxiety Scale, was revised to meet current psychometric standards. A 73-item revision draft was administered to 329 school children from grades 1 to 12. Based on item-analysis criteria for rbis greater than or equal to .4 and .30 less than or equal to p less than or equal to .70, 28 anxiety items were retained along with 9 of the original 11 Lie scale items. A cross-validation sample of 167 children from grades 2, 5, 9, 10, and 11 produced a KR20 reliability estimate of .85. Anxiety scores did not differ across grade or race. Females scored significantly higher than males. For the Lie scale, significant differences appeared by grade and race. No sex differences were obtained on the Lie scale. The resulting scale appears useful for children in grades 1 to 12 and may aid in future studies of anxiety as well as assisting the clinician in the understanding of individual children.
What imitation tells us about social cognition: a rapprochement between developmental psychology and cognitive neuroscience
Both developmental and neurophysiological research suggest a common coding between perceived and generated actions. This shared representational network is innately wired in humans. We review psychological evidence concerning the imitative behaviour of newborn human infants. We suggest that the mechanisms involved in infant imitation provide the foundation for understanding that others are 'like me' and underlie the development of theory of mind and empathy for others. We also analyse functional neuroimaging studies that explore the neurophysiological substrate of imitation in adults. We marshal evidence that imitation recruits not only shared neural representations between the self and the other but also cortical regions in the parietal cortex that are crucial for distinguishing between the perspective of self and other. Imitation is doubly revealing: it is used by infants to learn about adults, and by scientists to understand the organization and functioning of the brain.
What is funtioning and why is it important
What knowledge and skills do caregivers need?
What qualitative research can contribute to a randomized controlled trial of a complex community intervention.
Using the case of a large-scale, multi-site Canadian Housing First research demonstration project for homeless people with mental illness, At Home/Chez Soi, we illustrate the value of qualitative methods in a randomized controlled trial (RCT) of a complex community intervention. We argue that quantitative RCT research can neither capture the complexity nor tell the full story of a complex community intervention. We conceptualize complex community interventions as having multiple phases and dimensions that require both RCT and qualitative research components. Rather than assume that qualitative research and RCTs are incommensurate, a more pragmatic mixed methods approach was used, which included using both qualitative and quantitative methods to understand program implementation and outcomes. At the same time, qualitative research was used to examine aspects of the intervention that could not be understood through the RCT, such as its conception, planning, sustainability, and policy impacts. Through this example, we show how qualitative research can tell a more complete story about complex community interventions.
When a parent dies - a systematic review of the effects of support programs for parentally bereaved children and their caregivers
Abstract
BACKGROUND:
The death of a parent is a highly stressful life event for bereaved children. Several studies have shown an increased risk of mental ill-health and psychosocial problems among affected children. The aims of this study were to systematically review studies about effective support interventions for parentally bereaved children and to identify gaps in the research. METHODS: The review's inclusion criteria were comparative studies with samples of parentally bereaved children. The focus of these studies were assessments of the effects on children of a bereavement support intervention. The intervention was directed towards children 0-18 years; but it could also target the children's remaining parent/caregiver. The study included an outcome measure that dealt with effects of the intervention on children. The following electronic databases were searched up to and including November 2015: PubMed, PsycINFO, Cinahl, PILOTS, ProQuest Sociology (Sociological Abstracts and Social Services Abstracts). The included studies were analysed and summarized based on the following categories: type of intervention, reference and grade of evidence, study population, evaluation design, measure, outcome variable and findings as effect size within and between groups. RESULTS: One thousand, seven hundred and-six abstracts were examined. Following the selection process, 17 studies were included. The included studies consisted of 15 randomized controlled studies, while one study employed a quasi-experimental and one study a pre-post-test design. Thirteen studies provided strong evidence with regards to the quality of the studies due to the grade criteria; three studies provided fairly strong evidence and one study provided weaker evidence. The included studies were published between 1985 and 2015, with the majority published 2000 onwards. The studies were published within several disciplines such as psychology, social work, medicine and psychiatry, which illustrates that support for bereaved children is relevant for different professions. The interventions were based on various forms of support: group interventions for the children, family interventions, guidance for parents and camp activities for children. In fourteen studies, the interventions were directed at both children and their remaining parents. These studies revealed that when parents are supported, they can demonstrate an enhanced capacity to support their children. In three studies, the interventions were primarily directed at the bereaved children. The results showed positive between group effects both for children and caregivers in several areas, namely large effects for children's traumatic grief and parent's feelings of being supported; medium effects for parental warmth, positive parenting, parent's mental health, grief discussions in the family, and children's health. There were small effects on several outcomes, for example children's post-traumatic stress disorder (PTSD) symptoms, anxiety, depression, self-esteem and behaviour problems. There were studies that did not show effects on some measures, namely depression, present grief, and for the subgroup boys on anxiety, depression, internalizing and externalizing. CONCLUSIONS: The results indicate that relatively brief interventions can prevent children from developing more severe problems after the loss of a parent, such as traumatic grief and mental health problems. Studies have shown positive effects for both children's and remaining caregiver's health. Further research is required including how best to support younger bereaved children. There is also a need for more empirically rigorous effect studies in this area.
When a school-age child's parent has cancer
When children grieve
When grief makes you sick: bereavement induced systemic inflammation is a question of genotype
Although bereavement is associated with increased morbidity and mortality in the surviving spouse, some widow(er)s remain healthy. Genetic variability in expression of inflammatory markers in response to stress may be the key to this observation. The present study compares bereaved vs. married/partnered older adults, investigating the impact of bereavement status, pro-inflammatory cytokine single nucleotide polymorphisms (SNPs) on circulating markers of inflammation and hypothesizing a gene by environment (GxE) effect. The study sample included 64 older adults, of which 36 were widow(er)s. Circulating levels of inflammatory markers IL-6, IL-1RA and sTNFRII were measured. Participants were genotyped for SNPs in the IL-6 gene (IL-6 -174 and -572), the IL-1β gene (IL-1β -511), and TNF-α gene (TNF-α -308). Grief severity was assessed with the Inventory of Complicated Grief. Bereaved participants had higher circulating levels of IL-1RA and IL-6. This increase could not be explained by pro-inflammatory genotype frequency differences, or Complicated Grief diagnosis. However, a GxE effect with the IL-6 -174 SNP moderated individual vulnerability to higher circulating levels of inflammation resulting from bereavement exposure. These results suggest a possible mechanism for the increase in morbidity and mortality in the surviving spouse. Genetic variability interacts with an environmental stressor, leading to increased inflammatory markers in genetically susceptible subjects only. For these patients, clinical interventions for bereavement-related stressor reduction might be crucial for overall health.
When mom or dad has cancer. II Coping, cognitive appraisals and psychological distress in children of cancer patients
Abstract
Cognitive appraisals and coping were examined in children, adolescents, and young adults (N = 134) faced with the diagnosis of cancer in a parent. All 3 age groups perceived low personal control and high external control over their parent's illness and used relatively little problem-focused coping. Adolescents and young adults reported more emotion-focused coping and dual-focused coping (both problem- and emotion-focused in intent) than did preadolescent children. Stage and prognosis of parent's cancer were related to appraisals of greater seriousness and stressfulness, and to more avoidance; however, only appraisals of stress were related to symptoms of anxiety-depression. Emotion-focused coping was related to greater avoidance and to higher symptoms of anxiety-depression; coping and control beliefs did not interact in their association with anxiety-depression symptoms.
When mom or dad has cancer: II. Coping, cognitive appraisals, and psychological distress in children of cancer patients
Cognitive appraisals and coping were examined in children, adolescents, and young adults (N = 134) faced with the diagnosis of cancer in a parent. All 3 age groups perceived low personal control and high external control over their parent's illness and used relatively little problem-focused coping. Adolescents and young adults reported more emotion-focused coping and dual-focused coping (both problem- and emotion-focused in intent) than did preadolescent children. Stage and prognosis of parent's cancer were related to appraisals of greater seriousness and stressfulness, and to more avoidance; however, only appraisals of stress were related to symptoms of anxiety-depression. Emotion-focused coping was related to greater avoidance and to higher symptoms of anxiety-depression; coping and control beliefs did not interact in their association with anxiety-depression symptoms.
When more is not better: the role of cumulative risk in child behavior outcomes
Abstract
BACKGROUND:
Cumulative risk research has established the deleterious effects of co-occurring risk factors on child behavior outcomes. However, extant literature has not addressed potential differential effects of cumulative risk at different points in development and has left open questions about whether a threshold model or a linear risk model better describes the impact of cumulative risk on behavior outcomes. The current study examined the impact of cumulative risk factors (i.e., child maltreatment, inter-parental violence, family disruption, low socioeconomic status, and high parental stress) in early and middle childhood on child behavior outcomes in adolescence.
METHODS:
Using data from an ongoing longitudinal study of at-risk urban children (N=171), the cumulative effects of these five risk factors across early and middle childhood were investigated.
RESULTS:
The findings support the cumulative risk hypothesis that the number of risks in early childhood predicts behavior problems in adolescence. Evidence for a linear but not a threshold model of cumulative risk was found; the more risks present, the worse the child outcome. Moreover, the presence of multiple risks in early childhood continues to explain variations in predicting adolescent behavior outcomes even after including the effects of risk in middle childhood.
CONCLUSIONS:
The results support the need for comprehensive prevention and early intervention efforts with high-risk children, such that there does not appear to be a point beyond which services for children are hopeless, and that every risk factor we can reduce matters.
When resources get sparse: A longitudinal, qualitative study of emotions, disabilities coping and resource-creation when parenting a young child with severe
Parents who realize that their newborn child is severely disabled often experience severe physical and emotional stress. Parental well-being is essential for the care-taking of the child. It is yet not known why some cope well and others do not. The aim of this study was to explore how parents coped with parenting a disabled child and how they maintained their energy and personal resources. We explored parents' experiences, coping and resources over a two-year period after their child was diagnosed with a severely disabling condition using a qualitative, longitudinal approach. Findings were interpreted in a theoretical framework of Lazarus and Folkman's studies on coping and Fredrickson's broaden-and-build theory of positive emotions, as well as theories of positive illusions and benefit finding during severe adversity. We found that parents continually created and sustained their personal resources through positive cognitive reappraisals of their circumstances, the consequences of those circumstances and their coping possibilities. Nine main coping strategies were identified constituting transformative pathways in resource-creation. A theory of resource-creation is proposed as an addition to the current understanding of coping and the role of positive emotions. Coping and resources were found to be closely interrelated and portals of intervention are discussed.
White Paper on improving support for family carers in palliative care: part 1.
Who are the resilient children in conditions of military violence? Family- and child-related factors in a Palestinian community sample
The prevalence of resilience in the presence of military violence and the role of child and family characteristics fostering that resilience were analyzed in a Palestinian community sample using a person-based approach. The participants consisted of a random sample of 640 Palestinian children and adolescents, their parents, and their teachers, all living on the Gaza Strip. A medical examination of the children and adolescents was conducted to assess health status on somatic, sensory, and cognitive domains. The results revealed an equal share of resilient (21%; high level of trauma and low level of disorders) and traumatized (23%; high level of trauma and high level of disorders) children. As hypothesized, characteristics of the resilient group were good parental mental health, supportive parenting practices, good school performance, superior cognitive functioning, good physical health, high body weight, and normal birth weight. Variable-based analyses revealed no support for the hypothesis that these family- and child-related factors protect child mental health, although their direct association was confirmed. The discussion focuses on mechanisms fostering child resilience in war zones.
Who cares for the elderly? Public policy and the experiences of adult daughters
Who cares for young carers?
How much do we know of young carers - that is, children under 18 who provide primary care for sick, disabled, or elderly relatives in the home, usually their own parents?1 Meredith suggested that health professionals have failed to identify such children and have shown interest in them only when the possibility of psychological or physical disorders has been raised.2
Small studies have suggested that there are at least 10 000 young carers in Britain.3,4 Recent research has, however, rejected the usefulness of such data, concentrating instead on the qualitative impact that caring may have on a child's health, psychosocial development, and opportunities.*RF 5-7*
A substantial obstacle to addressing the needs and concerns of young carers has been a lack of awareness of their existence. Providers of services - whether health, education, or social services - have consistently failed to identify young carers. As one young carer said, "You can't picture a child picking up an adult, getting them on to the stair lift, taking them up, bathing them. If you can't picture it, it doesn't happen."8
Who cares? Managing obligation and responsibility across the changing landscapes of informal dementia care
This paper explores the different ways in which informal carers for people with dementia negotiate their care-giving role across the changing organisational and spatial landscape of care. In-depth qualitative data are used to argue that the decisions of carers are socially situated and the result of negotiations involving individuals, families and wider cultural expectations. These decisions affect where care occurs. In addressing these issues this paper draws attention to the lack of choice some carers may have in taking on the care-giving role; how and why carers draw upon support; and the different expectations of the care-giver's capabilities across the different sites of care, specifically at home and in nursing homes. It concludes that research and policy attention should focus on how the expectations about the role and abilities of carers are affected by where, and how, care is delivered. In doing so this paper contributes to the emerging health geography literature on care-giving as well as developing the spatial perspective in the established gerontological literature..
Who cares? Uncovering social Support Needs and Resources of malignant CNS Tumor Patients and their informal Caregivers.
Background: Social relationships (i.e.interpersonal relations with individuals or groups) have been shown to have long- and short-term effects on health outcomes including reduced mortality risk and quality of life among cancer patients. Patients with tumors in the central nervous system (CNS) often suffer cognitive, neuropsychological and functional impairments, causing major support needs among this patient group and their loved ones caring for them, here referred to as informal caregivers. Informal caregiving can be a positive experience, but it may also have negative psychosocial and physical implications for the caregiver. Further, the quality of social relations among cancer patients and their informal caregivers may decrease over time as illness progresses. The Swedish Brain Tumor Association has started an initiative whereby patients and their informal caregivers introduced to drawing so-called caremaps, social network diagrams visualizing both their formal and informal relations. The hypothesis is that caremaps can support communication and coordination, and may even contribute to strengthening social relations. The aim of this study is 1) to explore what type of social relations and resources are important for CNS tumor patients and their informal caregivers and 2) to explore how they reason about the potential benefits and risks of using caremaps to map and possibly share their social relations. Methods: Setting: During the fall of 2018 and early spring 2019 patients and informal caregivers who have been introduced to Caremaps through the Swedish Brain Tumor Association will be invited to participate in focus group discussions or individual interviews to reflect on their social support needs and their impressions of the Caremaps tool. We estimate to involve approximately 10-20 participants. Results: We expect to be able to present our preliminary findings from the workshops, interviews and focus group discussions at the ICIC 2019 conference, highlighting experienced needs and challenges, as well as first impressions of using caremaps. Discussion: An increasing incidence and prevalence of CNS tumor patients calls for innovative solutions to secure adequate care and support for both the patients and their informal caregivers. Identifying an individual's informal and formal care resources may provide a context in which to navigate among the existing and potential support. It may also serve to facilitate the assessment and appreciation of patients' dependence on informal care as well as of caregiver burden and thus caregivers' support needs. Contribution: Our findings will contribute with insights about how social relationships can be mapped and supported and how caremaps can be a tool for CNS tumor patients and their informal caregivers in self-management, which has implications for designing services to enhance patient and informal caregiver self-care and well-being. This research project is conducted in collaboration with the Swedish brain tumor patient association, Karolinska Institutet, Karolinska University Hospital and the Regional Cancer Center Stockholm-Gotland.
Who knows best? Evidence-based practice and the service user contribution
This paper reviews the assumptions underlying traditional medical research and critiques the concept of 'evidence-based practice'. In particular, it identifies and counters three basic tenets of this approach: the alleged need for objectivity in research, the notion of hierarchies of evidence and the primacy of systematic reviews. Instead, the paper argues for a new emphasis on 'knowledge-based practice', recognizing that the practice wisdom of health and social care practitioners and the lived experience of service users can be just as valid a way of knowing the world as formal research.
Whos life am I living? Relatives Living in the Shadow of Depression
BACKGROUND:
Families living with mental illness experience added burden and need information and support.
AIM:
This aim of this study was to explore the experiences of families living close to a depressed individual.
METHODS:
Eighteen persons were interviewed individually or in focus groups. Data was analysed using a grounded theory-inspired methodology.
RESULTS:
Most participants expressed a feeling of not living their own life, struggling to balance relationships, adapting to and re-evaluating their life circumstances, and struggling to voice their ill relatives' and their own needs.
CONCLUSIONS:
More can be done to help and sustain hope in the relatives of persons with depression.
Whose empowerment and independence? A cross-national perspective on ‘cash for care’ schemes
Whose empowerment and independence? A cross-national perspective on ‘cash for care’ schemes.
Whose empowerment and independence? A cross-national perspective on ‘cash for care’ schemes.
This paper uses qualitative data from a cross-national study of 'cash for care' schemes in five European countries (Austria, France, Italy, The Netherlands and the United Kingdom) to consider the concepts of empowerment and independence in relation to both care-users and care-givers. The paper locates the schemes along two axes, one of regulation/non-regulation, the other whether relatives can be paid or not. Each of the schemes has a different impact both on the care relationship and on the labour market for care. In The Netherlands where relatives can be paid, for example, a fully commodified form of informal care emerges; but in Austria and Italy with low regulation, a mix of informal and formal care-givers/workers has emerged with many international migrant workers. In the UK, direct payments allow care-users to employ local care-workers who deliver care for various lengths of time; while in France a credentialised system means that care-work is delivered by qualified workers but for very short intervals. The main conclusion is that none of these schemes have a simple outcome or advantage, and that the contexts in which they occur and the nature of their regulation has to be understood before drawing conclusions about their impact on empowerment and independence on both sides of the care relationship.
Whose life am I living? Relatives living in the shadow of depression
BACKGROUND:
Families living with mental illness experience added burden and need information and support.
AIM:
This aim of this study was to explore the experiences of families living close to a depressed individual.
METHODS:
Eighteen persons were interviewed individually or in focus groups. Data was analysed using a grounded theory-inspired methodology.
RESULTS:
Most participants expressed a feeling of not living their own life, struggling to balance relationships, adapting to and re-evaluating their life circumstances, and struggling to voice their ill relatives' and their own needs.
CONCLUSIONS:
More can be done to help and sustain hope in the relatives of persons with depression.
Why older people living with a spouse are less likely to be institutionalized: The role of socioeconomic factors and health characteristics.
Video Observations of Dyadic Interaction: Behaviour style of Presymbolic Children
Widowhood and depression among older europeans-The role of gender, caregiving, marital quality, and regional context
Objectives. This study investigates the role of gender, caregiving, and marital quality in the correlation between widowhood and depression among older people within a European context by applying the theory of Social Production Functions as a theoretical framework.Method. Fixed-effects linear regression models are estimated using the first 2 waves (2004, 2006) of "The Survey of Health, Ageing and Retirement in Europe" (SHARE). A subsample of 7,844 respondents aged 50 and older in 11 countries, who were married at baseline and are either continuously married or widowed at follow-up, is analyzed.Results. Respondents who experienced widowhood between the 2 waves report significantly more depressive symptoms than those continuously married, with respondents living in Denmark and Sweden reporting a lower increase in depressive symptoms than those living in Greece, Spain, or Italy. There is no statistically significant interaction between gender and widowhood. Widowed persons who report higher marital quality at baseline show a larger increase in the number of symptoms of depression than those with low marital quality; widowed persons who report being a caregiver for their partner at baseline report smaller increase in the symptoms of depression compared with widowed noncaregivers.Discussion. The results support the results of previous studies using longitudinal data. Furthermore, the effect of widowhood varies among the 11 countries in the subsample although only a small amount of the variation in the increase of depressive symptoms after becoming widowed can be explained by such contextual factors.
Informal care and the impact on depression and anxiety among Swedish adults: a population-based cohort study
BACKGROUND: As the population is ageing, the need for informal caregivers increases, and thus we need to know more about the effects on caregivers. This study aims to determine both cross-sectional and longitudinal associations between perceived limitation of informal caregiving and mental health of caregivers.
METHODS: This population-based cohort study was based on the Swedish Psykisk hälsa, Arbete och RelaTioner (PART) study, and 9346 individuals aged 18-65 were included. Data were collected through questionnaires, interviews and Swedish registers. Informal care was defined as care given to a family member. Self-reported and diagnosed depression and anxiety were included as outcomes. Covariates included sex, age, social support and socio-economic position. Ordinal logistic regression and Cox regression were performed to determine the associations between caregiving and anxiety or depression.
RESULTS: Self-reported depression and anxiety was only increased among those experiencing limitations (adjusted odds ratios [aOR] 2.00, 95% confidence intervals [CI] 1.63-2.47 for depression; aOR 2.07, 95% CI 1.57-2.74 for anxiety) compared to those not giving care, respectively. The adjusted hazard ratio (aHR) were increased for diagnosed depression (aHR 1.97, 95% CI 1.27-3.05) and for diagnosed anxiety (aHR 1.86, 95% CI 1.06-3.25) among those giving care and experiencing limitations, compared to those not giving care. No significant associations were found in caregivers without limitations. CONCLUSION: Caregivers experiencing limitations showed a significant association with short- and long-term anxiety and depression. This study implies the importance of exploring the degree to which informal caregiving can be provided without adding burden to caregivers.
Dying within dyads: Stress, sense of security and support during palliative home care
OBJECTIVES: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. METHODS: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. RESULTS: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. CONCLUSIONS: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.
Being 'alone' striving for belonging and adaption in a new reality - The experiences of spouse carers of persons with dementia
BACKGROUND AND AIM: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs.
METHODS: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis.
RESULTS: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship.
CONCLUSIONS: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being.
Negative Impact and Positive Value of Caregiving in Spouse Carers of Persons with Dementia in Sweden
Background: Spouse carers of persons with dementia (PwD) are particularly vulnerable to negative outcomes of care, yet research rarely focuses on their caregiving situation. This study explores factors associated with the positive value and negative impact of caregiving in spouse carers of PwD in Sweden. (2)
Methods: The study was a cross-sectional questionnaire-based survey, with a convenience sample of spouse carers of PwD (n = 163). The questionnaire addressed: care situation, carer stress, health and social well-being, relationship quality and quality of support, and contained measures of positive value and negative impact of caregiving. (3) Results: Hierarchical regression models explained 63.4% variance in positive value and 63.2% variance in negative impact of caregiving. Three variables were significant in the model of positive value: mutuality, change in emotional closeness following dementia and quality of support. Six variables were significant in the model of negative impact: years in relationship, years as carer, behavioural stress, self-rated health, emotional loneliness and change in physical intimacy following dementia. (4)
Conclusions: Support to spouse carers of PwD should address the carer-care-recipient relationship quality, although different aspects of the relationship should be addressed if both the positive value of caregiving is to be enhanced and the negative impact reduced.
School Outcomes Among Children Following Death of a Parent
IMPORTANCE: To better support children with the experience of parental death, it is crucial to understand whether parental death increases the risk of adverse school outcomes.
OBJECTIVES: To examine whether parental death is associated with poorer school outcomes independent of factors unique to the family, and whether children of certain ages are particularly vulnerable to parental death.
DESIGN, SETTING, AND PARTICIPANTS: This population-based sibling cohort study used Swedish national register-based longitudinal data with linkage between family members. Register data were collected from January 1, 1990, to December 31, 2016. Data analyses were performed on July 14, 2021. The participants were all children born between 1991 and 2000 who lived in Sweden before turning age 17 years (N = 908 064).
EXPOSURE: Parental death before finishing compulsory school.
MAIN OUTCOMES AND MEASURES: Mean school grades (year-specific z scores) and ineligibility for upper secondary education on finishing compulsory school at age 15 to 16 years. Population-based cohort analyses were conducted to examine the association between parental death and school outcomes using conventional linear and Poisson regression models, after adjustment for demographic and parental socioeconomic and health indicators measured before childbirth. Second, using fixed-effect linear and Poisson regression models, children who experienced parental death before finishing compulsory school were compared with their siblings who experienced the death after. Third, the study explored the age-specific associations between parental death and school outcomes.
RESULTS: In the conventional population-based analyses, bereaved children (N = 22 634; 11 553 boys [51.0%]; 11 081 girls [49.0%]; mean [SD] age, 21.0 [2.8] years) had lower mean school grade z scores (adjusted β coefficient, 0.19; 95% CI, -0.21 to -0.18; P < .001) and a higher risk of ineligibility for upper secondary education than the nonbereaved children (adjusted risk ratio, 1.36; 95% CI, 1.32-1.41; P < .001). Within-sibling comparisons using fixed-effects models showed that experiencing parental death before finishing ompulsory school was associated with lower mean school grade z scores (-0.06; 95% CI, -0.10 to -0.01; P = .02) but not with ineligibility for upper secondaryeducation (adjusted risk ratio, 1.07; 95% CI, 0.93-1.23; P = .34). Independentof birth order, losing a parent at a younger age was associated with lower grades within a family.
CONCLUSIONS AND RELEVANCE: In this cohort study, childhood parental death was associated with lower school grades after adjustment for familial confounders shared between siblings. Children who lost a parent may benefit from additional educational support that could reduce the risk of adverse socioeconomic trajectories later in life
Informal care for people with dementia in Europe
Introduction: Informal care estimates for use in health-economic models are lacking. We aimed to estimate the association between informal care time and dementia symptoms across Europe.
Methods: A secondary analysis was performed on 13,529 observations in 5,369 persons from 9 European pooled cohort or trial studies in community-dwelling persons with dementia. A mixed regression model was fitted to time spent on instrumental or basic activities of daily living using disease severity and demographic characteristics.
Results: Daily informal care time was 0.5 hours higher in moderate compared to mild and 1.3h higher in severe compared to mild cognitive impairment. Likewise, this was 1.2h and 2.7h for functional disability and 0.3h and 0.6h for behavioral symptoms in the same directions.
Discussion: Estimates can be used in both single- and multi-domain health-economic models for dementia in European settings.
Keywords: Dementia; costs; health-economic evaluation; informal care; resource use.
Om barn och sorg: en handbok
För ett barn som tvingas uppleva ett dödsfall eller livshotande sjukdom hos en nära anhörig, förändras livet för alltid. Avgörande för barnets fortsatta psykiska hälsa är att det finns vuxna i närheten som förmår att ge rätt stöd. Syftet med denna bok är att den ska fungera som en handbok för professionella och anhöriga runt barnet.
I Att möta barns sorg – en handbok beskrivs hur skilda typer av förluster ger olika konsekvenser, både på kort och längre sikt. Vanliga sorgereaktioner och hanteringsstilar skildras, och hur sorgen förändras över tid. Boken tar också upp hur ett barns utvecklingsnivå påverkar dennes förståelse av sorg. I egna kapitel behandlas
• katastrofer, terror och barns sorg
• komplicerad sorg av rigid art som varar under lång tid
• att arbeta med familjer i sorg
• skolans stöd i sorgearbetet
• terapeutiskt arbete med barn i komplicerad sorg.
I boken ges konkreta råd om hur du som professionell eller anhörig kan stödja barnet; i hemmet, i skolan och i barnets andra relationer.
Att möta familjer inom vård och omsorg En samtalsmodell på systemisk grund rev. uppl.
När en familjemedlem insjuknar eller drabbas av ohälsa påverkas övriga familjemedlemmar individuellt, men även familjen som enhet. Genom att använda modellen Hälsostödjande familjesamtal kan samtalsledare och familj tillsammans identifiera upplevda problem och de styrkor och resurser som finns tillgängliga för att hantera situationer med ohälsa och sjukdom. Modellen är därför en viktig del i omvårdnadsarbetet.
I denna reviderade och uppdaterade upplaga är vissa kapitel omarbetade, vissa är borttagna och två kapitel har tillkommit. Dessa behandlar centrala utgångspunkter relaterat till att lära familjecentrerad omvårdnad och för att implementera modellen i kliniskt arbete. Boken vänder sig till studenter inom vård och omsorg på grundläggande och avancerad nivå.
Boken kan med fördel även användas av samtliga yrkesgrupper inom vård och omsorg.
Leva som andra och vara delaktiga i samhället: Information om LSS
Delaktighet, tillgänglighet, inflytande, självbestämmande, att få leva som
andra. Det är grundläggande principer i både svensk funktionshinderspolitik
och i lagen (1993:387) om stöd och service till vissa funktionshindrade,
LSS. Som beslutsfattare har du både ett stort ansvar och möjligheter att
förvalta dessa principer och omsätta dem i praktiken. Det är när insatser
beslutas och planeras och i mötet med den enskilde individen som
målsättningarna i funktionshinderpolitiken och i LSS kan förverkligas.
Publikationen finns som pdf på Socialstyrelsens webbplats.
Ensamhet bland äldre partnervårdare: En översikt över aktuell kvantitativ och kvalitativ forskning
En stor del av den informella omsorgen ges av en partner till omsorgstagaren, som kan behöva stöd på grund av åldersrelaterade sjukdomar eller funktionsnedsättningar. Partnervårdare är ofta äldre själva och omsorgen kan ha negativa effekter på deras hälsa och välbefinnande. Samtidigt har ensamhet fått mer uppmärksamhet i forskningen som en viktig faktor för hälsa och välbefinnande, och ensamhet har även lyfts på den politiska agendan. I den här rapporten undersöks sambandet mellan partnervård och ensamhet hos personer i åldern 65 år och äldre, vilka faktorer som ökar risken för ensamhet i denna grupp, konsekvenser av ensamhet, och hur de själva upplever ensamhet.
Caring and Health of Close Family Members of Frail Older Persons Recently Discharged from Acute Hospital Care: A Comparative Cross-Sectional Study
Abstract
Multimorbidity in older people is strongly linked to the need for acute hospital care, and caregiving activities usually become more complex after patients are discharged from hospital. This may negatively impact the health of close family members, although this has not been comprehensively investigated. This study aimed to explore the general and mental health of close family members caring for frail older (>65) persons recently discharged from acute hospital care, making assessments in terms of gender, relationship to the older person, and aspects of caring. A comparative cross-sectional study was conducted involving 360 close family members caring for frail older persons recently discharged from hospital. The statistical analyses included subgroup comparisons and associations to caring were examined. Half of the family members reported that their general and mental health was poor, with spouses reporting the poorest health. Female participants had significantly more severe anxiety, while males had significantly more severe depression. Providing care for more than six hours per week was associated with poor general health (OR 2.31) and depression (OR 2.59). Feelings of powerless were associated with poor general health (OR 2.63), anxiety (6.95), and depression (3.29). This knowledge may provide healthcare professionals with better tools in order to individualise support, preventing family members from exceeding their resources during these demanding periods.
Vem hjälper den som hjälper? : att vara anhörig till någon med psykisk ohälsa
Att leva nära någon med psykisk ohälsa kan vara förknippat med oro, smärta och maktlöshet. Är det möjligt att själv må bra om ens förälder, syskon, barn eller partner mår dåligt? Som anhörig är det lätt att ta på sig andras smärta och lägga allt ansvar på sig själv. Men den som är anhörig behöver också få utrymme att hantera sina känslor och reaktioner. Hur ska man veta när har man gjort tillräckligt och när behöver man släppa taget?
Ungefär var fjärde svensk lider någon gång i livet av psykisk ohälsa vilket betyder många drabbade anhöriga. I den här boken varvas aktuell forskning med strategier för att minska stress, oro och hantera känslor av skuld och skam. Kom ihåg att du behöver ta hand om dig själv för att orka vara stöd åt någon annan.
Psychometric Properties of the Parental Stress Scale in Swedish Parents of Children with and without Neurodevelopmental Conditions
Background: Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs.
Method: Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337).
Results: The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39).
Conclusion: In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.
Needs of Grandparents of Preschool-Aged Children with ASD in Sweden
Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents' Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents' demographics and perceptions of needs; grandparents' needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents' needs essential for planning and provision of quality family-centered early intervention services.
The use of the Strengths and Difficulties Questionnaire to assess mental health in adolescents with parents diagnosed with Amyotrophic Lateral Sclerosis
Amyotrophic Lateral Sclerosis (ALS) presents significant challenges for affected families. The aim for this study was to assess the feasibility of using the Strengths and Difficulties Questionnaire (SDQ) with adolescents and parents with and without ALS. The method involved repeatedly distributing the questionnaire to evaluate its content and structure within this group. The SDQ Prosocial Behaviour subscale and total difficulties score was calculated, along with median values and standard deviations. Parent-adolescent agreement was assessed using intraclass correlations. Data were collected from 11 Swedish families, including 14 adolescents (aged 8–25), 9 parents with ALS, and 8 co-parents. The findings revealed differences between parent and adolescent SDQ scores, emphasizing the need for adolescents’ self-assessments. Their SDQ scores did not indicate significant difficulties, suggesting that most were coping well with everyday life. However, there is significant heterogeneity in the experiences and needs of adolescents. A larger study is needed to confirm its usability
Living with a parent with ALS - adolescents’ need for professional support from the adolescents’ and the parents’ perspectives
Aim: The aim of the study was to qualitatively investigate the adolescents’ need for professional support when a parenthas amyotrophic lateral sclerosis (ALS) – from the adolescents’ and the parents’ perspectives. Methods: A total of 37 indi-vidual semi-structured single interviews with 18 families were conducted, including 11 adolescents aged 8-25 and 26parents, 13 with ALS and 13 co-parents. Data was analysed using qualitative content analysis. Results: Both adolescentsand parents described the adolescents as needing professional support but found it difficult to articulate this need.However, the results indicate that the adolescents needed help in bringing manageability into their lives due to theuncertainty of living with the illness in the family. It was therefore essential to ensure that the adolescents were not for-gotten in the disease context and that their needs for being involved as well as for obtaining information and understand-ing, was addressed. The importance of offering the adolescents support early was emphasized, but also of activelyhelping the families to master challenges in their everyday life. Support adapted to each family’s unique situation andpreferences was desired, as the adolescents’ need for support seemed to be individual, disease-dependent and varied dur-ing different phases. Conclusion: Given the adolescents’ need for information and understanding, healthcare professionalsmust actively work to reach the adolescents as early as possible. It is crucial to ensure that the adolescents are given theopportunity to be involved based on their own conditions, as well as to support the families to strengthen theircommunication.
Cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer: A qualitative study
Purpose: The purpose of the present study was to explore cancer specialist nurses' experiences of supporting family members of persons diagnosed with colorectal cancer.
Method: The study was designed as a qualitative study. Data was collected using individual semi-structured telephone interviews with 21 cancer specialist nurses. The interviews were transcribed and analysed with reflexive thematic analysis.
Results: The analysis generated one overarching theme, In the shadow of the person diagnosed with colorectal cancer, and four themes: striving for confidence, searching for ways to support, seeking individualization, and balancing between needs. Swedish colorectal cancer care is organized with the persons diagnosed with colorectal cancer as the centre of care and lacks both structure and allocated resources for supportive care for family members. Thus, support for family members has to be provided within the existing colorectal cancer care. The support provided focuses mainly on strengthening the family members' ability in the caregiving role and is offered primarily at the time of diagnosis.
Conclusion: There is an apparent need for developing supportive care plans for family members, involving repeated assessments of multidimensional needs, a tailored support, and follow-ups. Accordingly, a re-evaluation of the cancer specialist nurse's role is needed so that key nursing responsibilities are not ranked second to administrative tasks.
Keywords: Cancer specialist nurse; Colorectal cancer; Family members; Needs assessment; Nursing; Oncology; Qualitative research; Supportive care; Thematic analysis.
Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study
Aim: To describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory.
Design: A descriptive qualitative study with a phenomenographic approach.
Method: Individual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist.
Results: The phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support.
Conclusion: Supportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed.
Impact: There is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory.
Implications for the profession and/or patient care: Findings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging.
A Vicious Circle of Hope and Despair: Stigma Experienced by Relatives of Persons with Severe Mental Illness
Not only people suffering from severe mental illness (SMI) but also their family members experience stigma. Relatives are met with negative attitudes from healthcare professionals, which adds to the problem. This Swedish study employed a qualitative inductive explorative design in the analysis of written free-text responses from 65 persons who completed a questionnaire for relatives of persons with SMI. The overarching theme, “A vicious circle of hope and despair”, was elaborated by four categories which formed a vicious circle: “Wanting openness, understanding and acknowledgement”; “Facing a lack of understanding from others”; “Seeking understanding from mental healthcare professionals but experiencing the opposite”; and “Keeping family experiences private.” If this vicious circle of family stigma is to be broken, measures are needed for both relatives and health care professionals.
Widowhood and depression among older europeans-The role of gender, caregiving, marital quality, and regional context
Objectives. This study investigates the role of gender, caregiving, and marital quality in the correlation between widowhood and depression among older people within a European context by applying the theory of Social Production Functions as a theoretical framework.Method. Fixed-effects linear regression models are estimated using the first 2 waves (2004, 2006) of "The Survey of Health, Ageing and Retirement in Europe" (SHARE). A subsample of 7,844 respondents aged 50 and older in 11 countries, who were married at baseline and are either continuously married or widowed at follow-up, is analyzed.Results. Respondents who experienced widowhood between the 2 waves report significantly more depressive symptoms than those continuously married, with respondents living in Denmark and Sweden reporting a lower increase in depressive symptoms than those living in Greece, Spain, or Italy. There is no statistically significant interaction between gender and widowhood. Widowed persons who report higher marital quality at baseline show a larger increase in the number of symptoms of depression than those with low marital quality; widowed persons who report being a caregiver for their partner at baseline report smaller increase in the symptoms of depression compared with widowed noncaregivers.Discussion. The results support the results of previous studies using longitudinal data. Furthermore, the effect of widowhood varies among the 11 countries in the subsample although only a small amount of the variation in the increase of depressive symptoms after becoming widowed can be explained by such contextual factors.
Widowhood and race
The health effects of marital status are frequently cited in the current debate on marriage promotion, but little is known about how marital health effects vary across groups. This article assembles the largest properly longitudinal and nationally representative dataset of elderly married couples in the United States (N = 410,272 couples) and provides strong evidence that the "widowhood effect"—how the death of a spouse increases the mortality of the survivor-varies substantially by race. The authors find that whites married to whites suffer a large and enduring widowhood effect. By contrast, blacks married to blacks do not suffer a detectable widowhood effect, possibly because they manage to extend the survival advantage of marriage into widowhood. For racially intermarried men, wife's race appears to dominate the size and presence of the widowhood effect entirely, regardless of husband's own race. These results likely arise from differences in the marital cultures and marital contexts of black and white couples. More generally, these results demonstrate that the health effects of social ties depend on the individual attributes of the actors they connect.
Viewpoints of working sandwich generation women and occupational therapists on role balance strategies
Abstract
Occupational therapists need to be cognizant of evidence-based role balance advice and strategies that women with multigenerational caring responsibilities can implement independently or with minimal assistance, as role balance may not be the primary goal during many encounters with this population. Hence, this study aimed to identify the viewpoints on the most helpful role balance strategies for working sandwich generation women, both from their own perspectives and from the perspective of occupational therapists. This was achieved through a Q methodology study, where 54 statements were based on findings from interviews, sandwich generation literature and occupational therapy literature. In total, 31 working sandwich generation women and 42 occupational therapists completed the Q sort through either online or paper administration. The data were analysed using factor analysis with varimax rotation and were interpreted through collaboration with experts in the field. The findings revealed similarities between working sandwich generation women and occupational therapists, particularly in terms of advocating strategies related to sleep, rest and seeking practical assistance from support networks. Differences were also present, with working sandwich generation women viewpoints tending to emphasize strategies related to coping with a busy lifestyle attending to multiple responsibilities. In contrast, occupational therapy viewpoints prioritized strategies related to the occupational therapy process, such as goal setting, activity focused interventions, monitoring progress and facilitating sustainable outcomes.
Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson