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.

Demencija sergančių ligonių priežiūra yra labai sudėtinga. Dienos centrai gerina ligonių, jų šeimos narių gyvenimo kokybę, padeda ligoniams ilgiau išlikti bendruomenėje. Kaune tokio centro nėra, tad buvo įvertintas dienos centro kūrimo poreikis ir paruoštas galimas dienos centro veiklos modelis/ organizacinė struktūra. Darbo tikslas. Įvertinti dienos centro, demencija sergantiems ligoniams, kūrimo poreikį Kauno mieste. Uždaviniai. 1. Įvertinti dienos centro kūrimo poreikį apklausiant demencija sergančių ligonių globėjus bei sveikatos priežiūros specialistus. 2. Įvertinti dienos centro, demencija sergantiems ligoniams, kūrimo galimybes peržvelgiant teisinę bazę. 3. Paruošti galimą dienos centro veiklos modelį/ organizacinę struktūrą, ligoniams sergantiems demencija, remiantis literatūra ir apklausos rezultatais. Tyrimo metodika. Tyrimas buvo atliekamas anoniminės anketinės apklausos būdu penkiose Kauno Psichikos sveikatos centruose ir Alzheimerio klube 2006 m. rugsėjo – 2007 m. sausio mėnesiais. Anketas užpildė 25 ligonių globėjai (G) ir 41 sveikatos priežiūros specialistas (SPS). Tiriamąją grupę sudarė 66 asmenys, iš jų – 60 moterų ir 6 vyrai. Globėjų grupėje amžiaus vidurkis buvo 58 metai (amžiaus ribos 29 – 78 metai), o SPS grupėje - 42 metai (amžiaus ribos 25 – 74 metai). Dienos centro kūrimo poreikio įvertinimui naudotos dvi apklausos anketos: anketa skirta ligonių globėjams ir anketa – sveikatos priežiūros specialistams. Duomenys analizuoti SPSS – 10.0 kompiuterine... [toliau žr. visą tekstą] / The care of patients with dementia is very difficult. Day centres improve the quality of life of these patients and their family members, help to stay longer in the community life. There is no such day centre in Kaunas, so it was evaluated the requirement of creation such centre and prepared the possible model/ structure. Aim of the study To evaluate the requirement of creation the day centre for the patients with dementia in Kaunas city. Objectives 1. Evaluate the requirement of the creation of day centre by questioning the health care specialists and carers of patients with dementia. 2. Evaluate the possibility of creation such centre for the patients with dementia reviewing the law basis. 3. Prepare the possible model/ structure of the day centre for the patients with dementia, according to the data in literature and results of the questioning. Methods. The research was performed by anonymous questioning in 5 Kaunas Mental health care centres and in Alzheimer‘s club during the period of 2006 september - 2007 january. 25 carers (C) and 41 health care specialists (HCS) completed the questionnaire. The research group was formed of 66 people – 60 women and 6 men. The average age in the carers group was 58 years ( age range 29 - 78 years), and in HCS group - 42 years (age range 25 - 74 years). There were used two questionnaires for evaluation the requirement of creation the day centre: first questionnaire was for the carers of the patients and other one – for the health care... [to full text]

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The objective of the present study was to explore the experiences of New Zealand non-relative foster carers fostering children with attachment difficulties (indicative of disorders of non-attachment). This objective was achieved using a detailed Interpretative Phenomenological Analysis (Smith et al., 2009). Analysis revealed five themes evident in carer accounts: expectations versus reality; satisfactions and strains of fostering children with attachment difficulties; attachment relationships and the benefits of information; the impact of others on the caring experience; and negative expectations and future concerns. Overall, these themes suggest that fostering children with attachment difficulties is a complex and challenging experience which significantly impacts carers and their families. While lack of public understanding and public judgement compound the difficulty of the experience, receiving information about fostering and attachment difficulties appears to alleviate it. The five identified themes and their relation to the existing literature are explored in detail in this thesis. Implications for social policy and practice are discussed, and potential future research directions are outlined.

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>

Appropriate long-term care arrangements for children whose birth families are unable or unwilling to raise them is one of the most critical issues confronting providers of children's social services. Knowing something of the longer term outcomes of different types of provision, the factors associated with differential outcomes and requirements for additional services will all assist in the development of practice and policy in this field. This document reports on a decade of publications arising from just such an applied programme of research, to which I have made a significant contribution in terms of research design, data collection, analysis of data and dissemination through both publication and other means. These publications represent a unique and original contribution to the field in terms of methodology and the analysis approach, the samples studied and the relevance of the findings to the policy and practice world. The majority of the publications focus on a sample of children placed for permanence during their middle childhoods, that is children placed between the ages of five and eleven years. This cohort was followed-up at one-and six-years after placement. Some of the findings from the early works were then explored in more depth in subsequent publications. The contribution to knowledge that is evidenced by these publications is reinforced by the use of longitudinal and prospective methods to address some of the weaknesses of previous work in this area. By focussing particularly on children placed during middle childhood, the works have added considerably to the knowledge base concerning permanent family placement for children. This is true not only in looking at disruption rates but also in terms of the factors associated with poorer outcomes among continuing placements in the short-and medium-term. In particular, several of the papers draw attention to the identification of what may prove to be a very important experience in the backgrounds of some looked after children -preferential rejection. This term has been coined to describe children who have been 'singled-out', within a sibling group, for negative attention from birth parents and who are alone in entering the care system. Although numbers were relatively small, the association between this experience and poor outcome in the later permanent placement was found to be highly significant, and held across time, within the samples studied. The papers, taken together, have also substantially informed the debate on likely support and intervention requirements of placed children and their new families and at least one of the selected publications has contributed specifically and significantly to government policy making.

This thesis presents a retrospective critique of the social and political construction of 'informal care' within community care policy from the period of the late 1970s to the mid 1990s. The thesis considers the question of the degree of 'choice' available to informal carers to say 'no' to caring, or aspects of caring, within the reforms' positioning of informal care as the first line of support for adult dependants. The critique focuses on subjectivity, difference, agency and choice. A theoretical and methodological synthesis is developed between feminist post-structuralism, feminist critiques of mainstream social policy, and feminist theory and research, within which a qualitative in-depth interview study with informal carers is situated. The critique is then expanded through the development of a 'Q' Methodology study with a larger cohort of informal carers. The research identified gendered generational differences between the carers, and a 'burden' of care imposed as an outcome of consecutive governments' attempts to residualise welfare. The older carers' levels of agency and choice were severely curtailed. However, the younger female carers were more able to resist the drive of the community care reforms, their counter discourses being based on a new emergent notion of 'rights'. The direction of community care policy was found to be out of step with how the carers within this study perceived their responsibilities and 'obligations'. The thesis argues that whilst post-modernism may have constrained the capacity of governments and reconstituted our understanding of 'care', it has not done so to the extent that we are no longer prepared to make demands for 'care' from and by the state.

This study described the play experiences of daughters who were caregivers to their mothers with multiple sclerosis (MS). The experiences of four Canadian-Caucasian women aged 19-26 were captured using phenomenological methods of individual and focus group interviews, field notes, and artefacts. Three themes with supporting sub-themes emerged: (a) being a good daughter, (b) blurred relationship boundaries, and (c) encumbered play. Caregiving for their mothers was part of being a good daughter. Excessive caring duties changed their roles from being daughters to caregivers and contributed to feelings of maturity over peers. Their mother-daughter relationship boundaries were blurred and the participants wished to spend more time as daughters. Play, although sometimes limited, was highly valued and provided an escape from caregiving. Using family systems theory to interpret the findings, it was concluded that support for families living with MS would release children from caregiving duties so rounded childhood play could be experienced.

Bakgrund: Allt fler kommer drabbas av demenssjukdom och fler anhöriga kommer påverkas av att bli vårdande anhörig. Tidigare studier har visat att anhöriga behöver stöd under den period som de vårdar sina närstående med demenssjukdom. Att vara anhörig till en närstående som är demenssjuk påverkar anhörigas hälsa och välbefinnande. Hälso- och sjukvårdspersonal finns tillgänglig under hela perioden: från diagnos till flytten till ett boende. Det har även noterats om vikten med informella personers stöd. Nationella riktlinjer finns sedan tidigare om att stötta och erbjuda utbildning till anhöriga i deras situationer, men det är oklart huruvida detta uppfylls. Hälso- och sjukvårdpersonal innehar kunskap men det noteras en brist på förståelse för den situation anhöriga befinner sig i såväl som vårdande anhörig i ordinärt boende som efter flytten till äldreboende. Syfte: Syftet med studien var att belysa anhörigas upplevelser av formellt och informellt stöd genom sjukdomsförloppet vid demenssjukdom.  Metod: Studien är en kvalitativ intervjustudie där sju anhöriga, som tidigare varit vårdande anhöriga men som nu har närstående boendes på äldreboende, intervjuats. Intervjuerna var semistrukturerade och analys genomfördes med hjälp av kvalitativ innehållsanalys. Resultat: Resultatet visade att stöd och utbildning inte endast behövs i början av demenssjukdomen när diagnos ställs utan är något som kontinuerligt behöver erbjudas under processens gång och ges till anhöriga. Ett stöd var av vikt även efter flytten till ett boende. Det framkom även att kommunikation och kompetensutveckling i form av utbildning kring demenssjukdomen är en viktig del för att kunna förbättra relationen mellan hälso- och sjukvårdspersonal och anhöriga. Brist på kommunikation och en dålig relation mellan anhöriga och hälso- och sjukvårdspersonal ledde till psykisk ohälsa och lidande för anhöriga. Informellt stöd i form av grannar och familj var av stor betydelse för anhöriga. Slutsats: Det finns en viktig del som specialistsjuksköterska/sjuksköterska kan göra vilket var bland annat att ge kunskap till anhöriga och till personal om demenssjukdom under hela processen. Det kan förbättra ett bemötande och skapa en god relation med anhöriga, men det kan även ge mer kvalité till vården och genom detta ge trygghet till anhöriga. Genom tillämpning av relationscentrerad vård tillsammans med personcentrerad vård kan det ge stöd och delaktighet till anhöriga. Det var viktigt att stödet var individualiserat för anhöriga och att hälso- och sjukvårdspersonal får en förståelse för deras situation och de känslor de har. / Background: More people will be diagnosed with dementia and more relatives will be affected and become informal carers. Previous studies show that informal carers need support during the period they care for their relative with dementia. To be an informal carer to a next-of-kin affects the carers’ health and well-being. Healthcare staffs are available during this whole period: from diagnosis to the placement at a nursing home. It has also been noted of the importance of informal persons support. There are national guidelines about support and to offer education to informal carers in their situation, but it is unclear how this is fulfilled. Healthcare staff beholds knowledge but there is noted a lack of understanding for the situation informal carers are in, both during the time of caring and after the move to a nursing home.   Aim: The aim of the study was to illuminate informal carers experiences of formal and informal support through the course of the dementia-disease. Method: The study is a qualitative interview study, where seven informal carers were interviewed. The informal carers had previously been carers, before their relatives moved in to a nursing home. Semi-structured interviews were conducted and were analyzed with qualitative content analysis. Result: The study show that the support and education is not only needed in the beginning of the dementia disease when the diagnosis is set, but support needs to be offered continuously and given to informal carers during the whole disease trajectory. Support is needed even after the move to a nursing home. It has been shown that communication and developing competence in forms of education about dementia is an important part to improve the relationship between informal carers and healthcare staff. Lack of communication and a bad relationship between relatives and healthcare staff led to mental ill health and suffering for the relative. Neighbours and family members gave informal support, and this was of importance for the informal carer.  Conclusion: There is an important part that specialized nurses/nurses can do and that is to give or offer knowledge to informal carers and to healthcare staff about dementia during the whole process. It can improve the treatment of patients with dementia and their informal carers and through this create a good relationship and the feeling of safety, and also improve the quality of care. By applying relationship-centred care with person-centred care can give the feeling of support and participation to informal carers. It is also of importance that support is individualized for relatives and that healthcare staff has an understanding for their situation and the emotions they have.

There are a considerable number of children who fulfil a young carer role for a parent, sibling or relative. Research into the experiences of young carers is growing, and has explored the areas of supporting parents and siblings with physical and mental health difficulties. Although research into the experience of adult carers of individuals with psychosis-related difficulties is well established, the experience of young carers supporting a parent with a psychosis-related difficulty are yet to be studied. The aim of this study was to gain a richer understanding of the lived experience of young carers supporting a parent with a psychosis-related difficulty from a retrospective position. Semi-structured interviews were conducted with seven adults who were young carers for a parent with a psychosis-related difficulty. The interview transcripts were split into two parts and analysed using Interpretative Phenomenological Analysis. Part one explored the experience of caring at the time, with two themes emerging from participant's accounts: 'Feeling isolated and alone' and 'Caring was taking the parent role'. Part two explored the integration of the experience into the current self, with two themes emerging: 'Understanding the experience is an ongoing struggle' and 'Making sense of the person I have become'. The findings are discussed in light of the current research literature and show both areas of agreement and unique insights into the experiences of this particular group. Clinical implications in light of the findings and future research suggestions are also considered.