Bakgrund: Närstående inom palliativ vård har en viktig roll som patientens språkrör och funktion att upprätthålla patientens identitet. De antar ofta rollen som vårdare vilket är förknippat med många negativa känslor som ångest, rädsla, oro och sorg. Närståendes behov kan vara så stora att de överträffar patientens. Det är viktigt att närstående involveras i vården och att de får stöd i sin situation för att minska de negativa konsekvenserna. Stödsamtal kan utgöra en avgörande skillnad mellan en orimlig situation till en situation som är hanterbar. Stödinterventioner har dock begränsad evidens för långsiktiga resultat. Kunskapen om närståendes erfarenheter från stödsamtal är liten. Syfte: Att undersöka närståendes erfarenheter från en samtalsintervention inom palliativ vård. Metod: Beskrivande och tolkande design. Datainsamlingsmetoden är kvalitativ forskningsintervju. För analysen användes kvalitativ innehållsanalys. Resultat: Initialt var närstående skeptiska mot stödsamtal som kändes nytt och främmande men ansåg efteråt att samtalen var nödvändiga och att de borde vara obligatoriska inom palliativ vård. Det kändes viktigt att få prata med någon som kände till patienten och visste hur familjesituationen såg ut. Samtalen gav tid för reflektion där man dels pratat om existentiella frågor, dels om relationer och olika praktiska saker. Samtalen gav också vägledning för hur situationen kunde hanteras såväl under som efter vårdtid samt för att kunna gå vidare i livet. Diskussion: Resultatet diskuteras mot pendlingsmodellen där sorg ses som en stressor i en process som kan hanteras genom förlustorientering eller återhämtningsorientering och pendlingen däremellan. Samtalen har handlat om saker som kan ses vara förlustorienterande samtidigt som de handlat om andra saker som kan ses vara återhämtningsorienterande. / Background: In the context of palliative care, family carers have an important role to play as the patients spokesperson and help maintain the patients identity. They often take on the role as nursing carer which often is associated with many negative feelings such as anxiety, fear, concern and a sense of bereavement. Family carers need for support may be so great that they exceed the needs of the patient. It is important to involve family carers in caring and to support them in their situation in order to decrease negative consequences. Counseling support could make a crucial difference between an unreasonable and a manageable situation. However, there is limited evidens to the longterm impact of support interventions. Knowledge of family carers experiences of counseling support is limited. Aim: To examine family carers experiences of a counseling support intervention in palliative care. Method: Descriptive and interpretive research design. Qualitative research interviews used for data collection. Qualitative content analysis used for data analysis. Results: Initially the family carers were skeptical about counseling support which felt new and strange but afterwards felt necessary and ought to be mandatory in palliative care. It felt important to talk to someone who knew the patient and who knew the family situation. Counseling gave time for reflection where they both talked about existential questions, relationships and different practical tasks. Counseling also gave guidance on how to handle the situation during and after caring and to move on in life. Discussions: The results are discussed in the context of the dual process modell where bereavement is a stressor that can be coped with a loss orientation or restoration orientation and the oscillation in between. The counseling has focused on tasks that could be seen as lossorientated and at the same time on tasks that could be seen as restoration-orientated.

Bakgrunn: Demens er en av hovedårsakene til sykdom i eldre år. Pårørende til personer med demenser i risikofor å få omsorgsbelastninger, og en stor andel er i yrkesaktiv alder.Undersøkelser viser at pårørende kan komme i konsekvenser for arbeidsliv. Hensikt: Studiens hensikt var å undersøke og beskrive om, og i så fall hvordan pårørendes omsorg for personer med demens kan påvirkederes fungering i arbeidslivet. Videre,å sepå sammenhengen mellom pårørendes opplevelse av påvirkning og ulike karakteristika ved omsorgssituasjonen, samt beskrive hvordan de mestrer omsorgsutfordringene i arbeidstiden. Metode: Studien baseres på datafra spørreskjemaer fra 594 yrkesaktive pårørende som svarte på spørsmålet om omsorgsoppgavene påvirket deres fungering på arbeid. Dataene ble samlet inn i forbindelse med to tidligere norske tverrsnittsstudieri henholdsvis 2002-2004 og 2008-2009,og inkluderer både kvantitative og kvalitative data. Resultat: 37.5 % av de pårørendemed gjennomsnittsalder på 51 år og signifikant flere kvinner,svarte at omsorgen påvirket deres fungering i arbeidslivet. Den største gruppen (69.2 %) var døtre til en forelder med demens. Bosted til personen med demens ga ingen signifikant forskjell med hensyn til om pårørende opplevde påvirkning, mens derimot å bo sammen med personen med demens gjorde det. Situasjonen resulterte blant annet i telefoner fra personen med demens, praktiske omsorgs-oppgaverogoppfølging i forhold til tjenestetilbudet i arbeidstiden, samt ulike former for fravær fra arbeid. Pårørende opplevde stress og å komme i tidsklemme. Tilfredshet med tjenestetilbudog hjelp og støtte fra familie og venner syntes å ha en positiv effekt. Konklusjon: Studien viser at å være omsorgsgiver for en person med demens og samtidig yrkesaktiv kan ha en negativ påvirkning på fungering i arbeidslivet. Pårørende oppleveret dilemma mellomå mestre omsorgsoppgavene og samtidig opprettholde et optimalt yrkesaktivt liv / Background: Dementia is a major cause of illness in old age. Family carers for persons with dementia are at risk of experiencing burden of care. Many carers continue to work while providing care. Studies show that "time squeeze" induced by caring for an elderly family member might have negative consequences for the carers’employment. Aim: This study aimed to examine and describe whether caring for persons with dementia affects family carers’ ability to function at work. Furthermore,the aim of the study was to examine the relationship between various characteristics of the carer’s situation and functioning at work. It also describes how they cope with obligations both as carers and employees. Methods: The study is based on data from questionnaires completed by 594 of 614 employed family carers who responded to a question about how caring for a person with dementia affected ability to function at work. Data were collected in connection with two former Norwegian cross-sectional studies, conducted in 2002-2004 and 2008-2009.The present study includes both quantitative and qualitative data. Results: Among all respondents 37.5% reported that caring for a family member with dementia affects their ability to function at work. Mean age was 51 years and significantly more women and daughters formed the largest group (69.2%). The residence to the person with dementia (own home or nursing home)revealed no significant difference regarding the carers impact at work, whereas living together with the family member with dementia did. Impact factors included phone calls from the person with dementia, practical caring tasks, followingup on healthcare services, and different types of absence from work.The family carers experienced stress and lack of time. Satisfaction with health care services, as well as help and support from family and friends seemed to have a positive effect. Conclusion: This study shows that balancing caring for a person with dementiain combination with being profewssionally active may negatively affect the ability to function at work. The dilemma family carers experience between work and care giving obligations maybe difficult to manage while maintaining an optimal active working life. / <p>ISBN 978-91-86739-88-1</p>

In this contribution, we investigate the relationships between paid and unpaid work in the lifeworlds of employed informal carers against the background of the Austrian long-term care regime. We pursue a twofold argument: On the one hand, we emphasize that combining paid and unpaid work currently poses serious difficulties for employed family carers in their everyday lives and impacts their current and future financial and social security. On the other hand, we argue that the relationships between employment and informal care are in fact not well understood by the common concepts of "reconciliation" or "work-life balance". These concepts are not able to explain the complexities of employed carers' lived realities and fail to adequately address the fundamental contradiction in the idea of a "reconciliation" of paid and unpaid work.

This thesis deals with informal (family) carers who provide for the care of an elderly person in their home environment. It focuses on selected moments of crises (motivation, accepting support, financing, impacts) based on the analysis of documents and the author's two-year working experience in this field. The objective of this thesis is to find out how the carers cope with such crises and what strategies they choose in their provision of care. The theoretical part of the thesis defines basic terms related to old age and their values, informal carers and related areas of care, including pre-defined crises. The research part is divided into methodology, in which part the author describes her methods of obtaining data through semi-structured interviews; and into the empiric part, which is based on the statements of the carers interviewed. Keywords: informal carers, family carers, senior, crisis

Background With an expected increase of seven to eight-fold in the UK in the number of people from a Black Asian Minority Ethnic (BAME) heritage living with dementia, there will be a similar increase in the number of family carers. Whilst policy and research have discussed issues pertaining to awareness and access issues for minoritised ethnic communities, there remains an under-representation of these communities in services. A lack of understanding on the part of service providers as to how services could meet the needs of these carers, together with a mistrust of services, leads to bias and misconceptions about dementia care amongst South Asian families. Added to this, migrant communities are now well established in the UK, yet little is understood about the factors impacting on care and coping in the face of discrimination and prejudice. This adds to the complexities of caring for older relatives living with dementia. Aims The aim of this doctorate was to develop an understanding of how South Asian families cope with caring transitions connected with the care needs of advancing dementia. Emotional and physical coping strategies require some elements of individual capability but also some external elements, such as information, support and access to services. This research set out to identify what, and how, it influenced South Asian family carers’ ability to cope, especially in the light of a lack of culturally appropriate services. I set out to explore these influences, as they are especially salient in the cultural context. The research explored how South Asian carers coped with transitions in dementia care whilst taking into consideration factors such family dynamics, cultural perspectives, values (including faith) and service provision. Design and methods I undertook two studies, both using a phenomenological methodology, underpinned by a social constructivist approach. The first study gathered retrospective accounts from former carers to identify key transitions in their experience of providing dementia care, and to identify factors to explore in a subsequent longitudinal study. It included in-depth semi-structured interviews with former carers from 5 families. The interviews were transcribed and then analysed using thematic analysis to identify key themes. These themes influenced the second study, where I interviewed carers from 7 South Asian families, who were actively caring for a relative living with advanced dementia. Four interviews took place bi-monthly with each family over a period of six months. Results Analysis identified a number of themes, which influence South Asian family carers’ ability to cope with the care needs of a relative living with advanced dementia. Study one identified five key themes, which were: stigma from family and community, access to information, appropriateness of services, expectations regarding caregiving, and attitudes arising from faith and religion regarding care provision. Family carers identified the transitioning aspects of South Asian communities themselves and how these influenced the adapting nature of culture, values and social norms in society. These include the changing nature and constructs associated with care and caregiving as care needs increase or become complicated, in relation to what is acceptable as care needs increase or become complicated. Study two incorporated findings of study one. Themes from the analysis identified some general factors, such as changing attitudes to cultural influences, faith-based impacts, carers’ own ability to cope with caring, coping as a family, gender-based influences, services and stigma as factors that impacted their coping experiences. Conclusion This PhD raised some interesting aspects relating to coping with care that included the value of nuanced approaches to understanding the needs of the family carers and their frustrations with barriers to accessing services that were associated with faith, gender and cultural expectations or obligations. There was a clear difference between the views of older South Asian family carers, who held more traditional values to providing care, and younger British-born carers, who saw their faith and values as not opposing their ability and desire to seek external sources of support, community or statutory services. The research therefore moves forward the previous discourse mainly restricted to awareness and attitudes. It moves it towards practical recommendations that can help support services to be more open-minded and tackle their own biases. Encouraging this, whilst taking into consideration aspects such as family-centred approaches or faith-based influences in supporting carers to better cope with the demands of caring for a relative with advancing dementia. / Alzheimer’s Society

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Yes / People with dementia or mild cognitive impairment (MCI) and their family carers face challenges in managing medicines. How medicines self-management could be supported for this population is unclear. This review identifies interventions to improve medicines self-management for people with dementia, MCI and their family carers, and which core components of medicines self-management they address. Methods A database search was conducted for studies with all research designs and ongoing citation searches from inception to December 2021. Selection criteria included community dwelling people with dementia and MCI and their family carers, and interventions with a minimum of one medicine self-management component. Exclusion criteria were wrong population, not focusing on medicines management, incorrect medicines self-management components, not in English and wrong study design. Results are presented and analysed through narrative synthesis. The review is registered [PROSPERO (CRD42020213302)]. Quality assessment was carried out independently applying the QATSDD quality assessment tool. Results Thirteen interventions were identified. Interventions primarily addressed adherence. A limited number focused on a wider range of medicine self-management components. Complex psychosocial interventions with frequent visits considered the person’s knowledge and understanding, supply management, monitoring effects and side-effects and communicating with healthcare professionals; and addressed more resilience capabilities. However, these interventions were delivered to family carers alone. None of the interventions described patient and public involvement. Conclusion Interventions, and measures to assess self-management, need to be developed which address all components of medicines self-management, to better meet the needs for people with dementia and MCI and their family carers.

No / Twenty six young people with intellectual disabilities and mental health needs from Pakistani and Bangladeshi communities were recruited as part of a bigger study to examine the effectiveness of a liaison worker in helping young people and their families access appropriate intellectual disabilities and mental health services. Method Twelve young people were randomly allocated to the treatment group, which had the help of the liaison worker, and 14 young people were allocated to the control group without the help of a liaison worker. Baseline measures were undertaken with all the young people and their carers. This was followed by a 9-month trial, consisting of the liaison worker helping the treatment group to get in touch with and take up appropriate services, mainly in the areas of psychiatric appointments, benefits advice, house adaptations, leisure facilities and support and care for the young person. The control group participants did not have the access to the liaison worker and were accessing services using the normal routine. Assessments were carried out posttreatment to assess whether the use of a liaison worker had had any effect on outcomes for the two groups. Results Twelve young people completed the study in the treatment group and 14 in the control group. Participants allocated to the specialist liaison worker had statistically significantly more frequent contact with services and with more outcomes, than the control group, and significantly lower scores on the Strengths and Difficulties Questionnaire (SDQ). Conclusion The use of specialist liaison services in ensuring adequate access to services for young people with learning disabilities and mental health needs from the South Asian community proved to be significant and effective compared with young people and their families accessing services on their own.

The purpose of this study is to understand how street-level bureaucrats, working with clients with mental illness, are implementing their statutory obligation of support for family carers who are caring for or supporting relatives with mental illness. The study are based on vignettes and qualitative interviews with social workers in three different municipalities in southern Sweden.   The questions of this study are: • How do the social workers communicate their statutory obligation of support to family carers? • How do the social workers distinguish the family carers? • How do the social workers distinguish the family carers who are in need of support?   Metod: Vignettes and qualitative interviews has been used as methods to gather empirical data. Theory: Theories of street-level bureaucracy has been used as theory in the analyses of the empirical material. Results: The result of this study concludes that the social workers, in lack of policy introduction, communicate their obligation to support family carers within their discretion. The result shows that the majority of the municipalities do not have formalized support for family carers supporting relatives with mental illness. The study also concludes that the social workers have different understandings of which family carer who is a carer in need of support. How the social workers, within their discretion, distinguish a carer in need affects which family carers who are offered support. The study also concludes that the social workers have different understandings of which family carers are in need of support.

This diploma thesis deals with the topic of clients after lower limb/s amputation and their social rehabilitation afterwards in home care. Beginning of thesis describes the current situation and the concept of social rehabilitation as one of the comprehensive rehabilitation process of people in early post-amputation stage. Next section of thesis shows difficulties that occurs after amputation and impact upon personal life that is materially changed. Describing the process of coping with this unpleasant health change is based on traditional model of two important people in this field Mr. Kübler-Ross and Mr. Křivohlavý. At the same time, analysis of the formal support system in Ústí nad Labem is being evaluated. This system provides support not only to disabled people but also to people who take infromal care of the one injured. Informal care plays significant role in the process of social rehabilitation of people starting new life stage due to physical change. In thesis are mentioned possibilities of developing skills of informal caregivers, usage of financial benefits for disabled people and possible providers support of medical and social services in a given location. However, it also focuses on possible troubles associated with care provided by family members or other persons. At the same time,...