Informal Carers Of People Research Articles

Dignifying and undignifying aspects of care for people with dementia: a narrative review.

BackgroundThe progressive disease trajectory makes people with dementia increasingly vulnerable and gradually more dependent on others which can lead to admission to a nursing home. Special interest in dignity in people with dementia has led to a growing body of knowledge towards promoting or hindering their dignity.AimThe aim of this narrative review was to synthesise dignifying and undignifying aspects of formal and informal care for people with dementia within nursing homes.MethodThe electronic databases CINAHL, SCOPUS, PSycInfo and PubMed were systematically searched with the terms ‘dementia’ and ‘dignity’, complemented with the use of snowballing and reference check. A total of 789 unique items were found. The search and selection process was structured by the PRISMA framework, and both authors formulated the criteria of eligibility. A methodological check was performed using the critical appraisal tool of Hawker. This process led to inclusion of 29 articles which were reviewed with the help of the guidelines for narrative synthesis by Popay et al.FindingsThe emerged dignifying and undignifying aspects of formal and informal care are characterised by either a successful or unsuccessful process of adjustment towards changing abilities, preferences and care needs of people with dementia. Three themes appeared as undignifying aspects of care: ‘Stigmatisation and objectivation’, ‘Scarcity and hastiness’ and ‘Impending estrangement and misunderstanding’. Four themes were identified as dignifying aspect of care: ‘Personalisation’, ‘Respect, attentiveness and encouragement’, ‘Attention for physical care and bodily gestures’, and ‘Foster belonging’. Literature synthesis showed mostly relational aspects of care concerning dignity in people with dementia. Formal and informal caregivers are important in maintaining and promoting their dignity.

A validation study of the ICECAP-O in informal carers of people with dementia from eight European Countries

PurposeThe pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries.MethodsConvergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project.ResultsThe ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer–patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time.ConclusionThe ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

77 Behind the Scenes: the Burden Experienced by Informal Carers of People with Dementia

Abstract Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the ‘CHESS’ research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman’s correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.

Intellectual disability and autism: socioeconomic impacts of informal caring, projected to 2030.

Intellectual disability and autism spectrum disorder (ASD) influence the interactions of a person with their environment and generate economic and socioeconomic costs for the person, their family and society. To estimate costs of lost workforce participation due to informal caring for people with intellectual disability or autism spectrum disorders by estimating lost income to individuals, lost taxation payments to federal government and increased welfare payments. We used a microsimulation model based on the Australian Bureau of Statistics' Surveys of Disability, Ageing and Carers (population surveys of people aged 15-64), and projected costs of caring from 2015 in 5-year intervals to 2030. The model estimated that informal carers of people with intellectual disability and/or ASD in Australia had aggregated lost income of AU$310 million, lost taxation of AU$100 million and increased welfare payments of AU$204 million in 2015. These are projected to increase to AU$432 million, AU$129 million and AU$254 million for income, taxation, and welfare respectively by 2030. The income gap of carers for people with intellectual disability and/or ASD is estimated to increase by 2030, meaning more financial stress for carers. Informal carers of people with intellectual disability and/or ASD experience significant loss of income, leading to increased welfare payments and reduced taxation revenue for governments; these are all projected to increase. Strategic policies supporting informal carers wishing to return to work could improve the financial and psychological impact of having a family member with intellectual disability and/or ASD. None.

Anxiety in Informal Dementia Carers: A Meta-Analysis of Prevalence.

Much of the carer literature has focused on depression and burden as primary outcomes and anxiety appear somewhat neglected. Providing evidence on the prevalence of carer anxiety is critical as it can enhance awareness among professionals, which in turn can lead to improved access to efficacious treatments. This meta-analysis updated the previous review conducted in 2007 to estimate the up-to-date prevalence of anxiety in informal carers for people with dementia. Literature searches were conducted in databases of published and unpublished literature. Events and sample size data were pooled using a random effects model to obtain an overall prevalence percentage. A total of 10 studies were included, resulting in a pooled estimate of anxiety prevalence at 32.1% (95% confidence interval: 20.6%-46.2%, P = .01). Significant heterogeneity was found, which was not reduced following sensitivity analysis. This study suggests anxiety is a prevalent difficulty experienced by dementia carers. Additional research recommendations and clinical implications are discussed.

Carers of People with Mental Illness from Culturally and Linguistically Diverse Communities

ABSTRACTAustralia is a multicultural country and it is common for families from culturally and linguistically diverse (CALD) communities to care for their relatives with mental illness. However, there are limited Australian studies examining the experiences of informal carers of people with mental illness from CALD communities. A scoping review was conducted to search for peer-reviewed articles reporting the perception of carers regarding their caregiving experiences, wellbeing, and needs. Using cultural responsiveness as a conceptual framework, this study analysed the findings of the identified studies to generate themes. Findings show that carers experience severe caregiving challenges and face considerably poor culturally oriented services in mental health. Social work implications concerning the need to provide culturally responsive practice in mental health services are discussed.

Investment in Australian mental health carer services: how much and does it reflect evidence of effectiveness?

Objective The aims of this study were to quantify Australian federal and state government expenditure on mental health carer services for 2014-15, map the types of services being provided and explore how funded service types compare with the evidence base for the outcomes of these carer services. Methods Web searches were conducted to identify in-scope mental health carer services in Australia funded by federal and state and territory governments. Funding estimates were confirmed where possible with available government and carer organisation contacts. A literature search was conducted for reviews of studies investigating mental health carer service outcomes. Results In 2014-15, the estimated Australian national, state and territory government expenditure on mental health carer services was approximately A$90.6million. This comprised A$65.6million in federal expenditure and A$25.0million in state and territory expenditure. Most funding streams provided respite and psychoeducation. The literature showed positive carer outcomes for psychoeducation and intensive family interventions. Evidence was lacking for the effectiveness of respite services. Conclusions These findings suggest a mismatch between what is known about the extent to which different service types deliver positive carer outcomes and the current allocation of funds across Australia's mental health system. This study also highlights the fragmentation of the mental health carer services system, supporting the need to streamline access. What is known about this topic? Informal carers of people with mental disorders provide a critical role to the significant number of individuals with mental illness in Australia, and provide an unpaid workforce to the Australian mental health system. This role comes with significant physical, emotional and financial burden, which government-funded services can assist with to allow mental health carers to continue to serve in their caring role while improving their quality of life. What does this paper add? Using both published data and communication with health and non-government officials, we have estimated federal and state expenditure on mental health carer services at A$90.6million in 2014-15 fiscal year and have provided a mapping of the services this expenditure funds. In addition, through analysis of the literature on outcomes of carer services provided, we have seen a mismatch of expenditure and the evidence base. What are the implications for practitioners? There is a necessity for both more research into service outcomes aimed particularly at mental health carers and thinking critically about whether the current prioritisation of funds can be increased and/or reallocated to create better outcomes for mental health carers.

Psychological outcomes of eCare technologies on informal carers of older people

An introduction : With increasing age and longevity, the needs for long-term care and thus informal care, will increase significantly in the coming decades. The use of eCare technologies has a huge potential in solving challenges related to demographic changes and decreased care potential. However little is known about the potential of eCare technologies in relation to psychological outcomes on informal carers. Theory/Methods : The scoping review based on Arksey & O'Malley framework, includes 17 studies published since 2013. Peer reviewed papers, written in English, investigating the use of eCare technologies in informal care and their psychological outcomes on informal carers, were included. Non-scientific studies, and studies which focused on psychological counselling or training through internet or phone, were excluded. The search was conducted in Academic search complete, Scopus, ProQuest and Science Direct in October 2017. We explored the psychological outcomes of eCare technologies on informal carers of older people. Results : We identified three wider themes: a peace of mind and reassurance of informal carers, b positive psychological outcomes, burden and quality of life of informal carers while using eCare technologies, c negative outcomes of technology on informal carers. The review also showed that monitoring devices were most reported eCare technologies in relation to positive psychological outcomes. Discussions : Our study revealed a dearth of research on psychological outcomes of eCare technologies on informal carers. Informal carers of people with dementia were most frequently mentioned in selected studies, which can be due to the nature of the disease and its caring demands. Another open issue is whether positive psychological outcomes could be increased if informal carers’ needs, perspectives and issues would be more considered by ICT developers and designers. Nowadays, ICT designers concentrate their work mostly on the services’ functionalities and applications. Conclusions : The results show a strong connection between older peoples' safety and carers' peace of mind, which can be reached through eCare technology. Although there were some contradictions of outcomes across the studies, there is at least some evidence to support the use of eCare technologies in an effective approach in alleviating negative psychological outcomes e.g. burden reduction, increased peace of mind of informal carers. Lessons learned : Availability, accessibility, appropriateness, acceptability and affordability of eCare technologies are future challenges that still need to be considered more systematically. Limitations : The review contained a small number of selected studies, and even though there were other technological solutions identified during the search, we did not include internet-based interventions. Despite, the search key words used in the review were broadly inclusive in order to capture all studies, the search was limited to four databases and our scoping review search was limited to English studies only. Suggestions for future research : Further investigation is needed on psychological outcomes of eCare technologies on different groups of carers and on key technological features that have a psychological impact on informal carers. There is a need for more scientific evidence whether the eCare technologies actually fulfil older people and informal carers' needs and that were cost efficient.

Zakres badań naukowych w pielęgniarstwie rodzinnym. Przegląd piśmiennictwa z lat 1995–2015

ABSTRAKTWstęp: Pielęgniarstwo rodzinne jest rozwijającą się specjalizacją pielęgniarską podlegającą szybkim przemianom związanym z zapoczątkowaną w 1995 r. reformą podstawowej opieki zdrowotnej w Polsce. Szeroki zakres samodzielności pielęgniarek rodzinnych w realizacji świadczeń zdrowotnych wymaga od nich ustawicznego kształcenia oraz konieczności wykorzystania w codziennej praktyce wyników badań naukowych.Celem pracy jest określenie rodzaju i zakresu badań empirycznych w obszarze pielęgniarstwa rodzinnego prowadzonych w Polsce w latach 1995–2015.Materiały i metody: Zastosowano metodę analizy i krytyki piśmiennictwa. Bazę do wyszukiwania danych stanowiła Polska Bibliografia Lekarska, baza PubMed oraz wyszukiwarka Google Scholar. Poszukiwanie prac było ograniczone do artykułów opublikowanych w latach 1995–2015 i dotyczących świadczeń realizowanych przez pielęgniarki rodzinne w Polsce.Wyniki: Ustalono, że w analizowanych pracach przewagę stanowiły badania ilościowe z wykorzystaniem techniki ankiety. Opublikowane prace mieściły się w następujących grupach badawczych: 1) pacjenci – odbiorcy świadczeń; 2) realizatorzy świadczeń, tj. pielęgniarki rodzinne; 3) lekarze rodzinni oraz opiekunowie nieformalni osób objętych opieką pielęgniarki rodzinnej z uwzględnieniem relacji pielęgniarka–pacjent.Wnioski: 1. Widoczny jest brak różnorodności metodologicznej w badaniu roli pielęgniarki rodzinnej. 2. W pracach zmarginalizowana jest rola pielęgniarki rodzinnej w opiece nad osobami w wieku rozwojowym i produkcyjnym. 3. Pielęgniarki rodzinne wykonują niewiele zadań samodzielnych wynikających z posiadanych kompetencji.

How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures.

BackgroundIn the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this.MethodsA systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties.ResultsTen instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer’s Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population.ConclusionThe CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties.

Informal carers\u2019 perspectives on the delivery of acute hospital care for patients with dementia: a systematic review

BackgroundProviding high quality acute hospital care for patients with dementia is an increasing challenge as the prevalence of the disease rises. Informal carers of people with dementia are a critical resource for improving inpatient care, due to their insights into patients’ needs and preferences. We summarise informal carers’ perspectives of acute hospital care to inform best practice service delivery.MethodsWe conducted a systematic search of bibliographic databases and sought relevant grey literature. We used thematic synthesis analysis to assimilate results of the studies and describe components of care that influence perceived quality.ResultsTwenty papers met the inclusion criteria. Findings identified four overarching components of care that influenced carer experience and their perceptions of care quality: ‘Patient care’, ‘Staff interactions’, ‘Carer’s situation’ and ‘Hospital environment’. Need for improvement was identified in staff training, provision of help with personal care needs, and dignified treatment of patients. Carers need to be informed, involved and supported during hospital admission in order to promote the most positive experience.ConclusionThis review identifies common perspectives of informal carers of people with dementia in the acute hospital setting and highlights important areas to address to improve the experience of an admission for both carer and patient.

Informal care and diversity explored in interdisciplinary research

Introduction: Collaboration between professionals and caregivers is not always effective1,2,3. This can be explained by the fact that caregivers and professionals have different backgrounds and frames of reference4. The Diversity and Informal Care-project of the AUAS elaborates on the differences between various groups when it comes to giving and receiving informal care and its impact on the needs and expectations of caregivers. Two PhD-studies are conducted, in which researchers from the Faculty of Health and of Applied Social Sciences collaborate. Methods: Both researchers conducted a review as a start of their PhD-studies. A systematic review was conducted to examine how professionals experience collaboration with caregivers. The other review, which is a scoping review, focusses on the caregivers’ opinion on the division of care and on the question whether professionals take this opinion into account. During the conference, we will present the findings of the systematic review (submitted) and some preliminary findings of the scoping review (currently being finalized). We will focus on interconnections and striking features. Results: Working in collaboration with caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the caregiver, where the focus is now mainly on the care recipient. This is difficult to attain due to different restrictions. Professionals express that they are not confident or qualified to support caregivers4. Responsibilities between professionals and caregivers are sometimes unclear. It is important to assess the cultural context in understanding caregivers. Cultural assumptions cause different experiences, but individual and cultural needs are not always taken into account by professionals5. Discussion: The systematic review revealed different reflections by professionals illustrating the complexity, multifaceted and dynamic interface of formal and informal care. Working in partnership with shared decision-making has not yet been reached4. Conclusion: The urgency to meet the needs of caregivers is high and knowledge about how professionals can support these needs is necessary. The perspectives of professionals and caregivers on collaboration differ and professionals who are not confident limit themselves to only giving basic advise. This makes the collaboration a complex endeavor, which is in need of specific guidelines and training for professionals4. The scoping review revealed that the importance of clear responsibilities is mentioned as facilitator for good collaboration between formal and informal care5. Lessons learned: There should be a dialogue in the interface between professionals and caregivers to eliminate the discrepancies in experiences between them. Support for caregivers should be included more in the curricula of allied health, nursing and social work education. This is in line with the emphasis that policies are placing on informal care structures6. Limitations: The findings might be less applicable to professionals working with care triads with a different cultural background; the included studies mostly did not take this aspect into account4. Suggestions for future research: Diversity of caregivers and professionals should be taken into account, as little knowledge about the diversity component emerged in the research included in the systematic review4. This will be taken into account in the further execution of both PhD-studies.

113Analysing the Burden of Care of Informal Carers of People with Moderate or Severe Dementia

113Analysing the Burden of Care of Informal Carers of People with Moderate or Severe Dementia

Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

ObjectivesTo explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. DesignCross-sectional study. SettingPeople with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). ParticipantsA total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. MeasurementsVariables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. ResultsCarer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. ConclusionA range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer.

Telephone interventions, delivered by healthcare professionals, for educating and psychosocially supporting informal caregivers of adults with diagnosed illnesses

This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: To evaluate the effectiveness of telephone interventions, delivered by healthcare professionals, when compared to usual care or non-telephone-based support interventions for educating and psychosocially supporting informal carers of people with acute and chronic diagnosed illnesses, on these carers' quality of life, psychosocial and physical well-being. We aim, additionally, to evaluate the cost-effectiveness of telephone interventions.

The development of evidence-based recommendations for supporting informal carers of people living with Motor Neurone Disease

The development of evidence-based recommendations for supporting informal carers of people living with Motor Neurone Disease

Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N=260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio-demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care-giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar-sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well-being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population-representative data. Poverty and long care-giving hours may make caregivers more susceptible to negative well-being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.

RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study.

Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group. The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support, and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer's disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes, caregivers' stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors, and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.

Informal care for people with chronic psychotic symptoms: four case studies in a San community in South Africa.

Despite the internationally recognised importance of informal care, especially in settings with limited services, few studies focus on the informal care for people with mental health problems in low- and middle-income countries. Making informal care visible is important for understanding the challenges and identifying the needs to be addressed. This ethnographic case study explored the dynamics of informal care for people with chronic psychotic symptoms in a group of San living in poor socioeconomic circumstances in a township near Kimberley, Northern Cape, South Africa. Data were collected in 2013 and 2014 and included semi-structured interviews, informal conversations and observations. Using local terminology, four individuals with chronic psychotic symptoms were identified and selected during the research process. A total of 33 semi-structured interviews took place with their caregivers. Data were analysed using descriptive, interpretive and pattern coding to identify core themes and interrelations across the four cases. Results indicate that informal care is characterised by shared and fragmented care structures. Care was shared among family members from various households and unrelated community members. This allowed for an adaptive process that responded to local dynamics and the care recipients' needs. However, informal care was fragmented as it was generally uncoordinated, which increased the recipients' vulnerability as caregivers could redirect care-giving responsibility and withdraw care. Specific challenges for providing care were related to poverty and care resistance. To improve the living conditions of people suffering from psychosis-related mental health problems, community-based mental healthcare should broaden its scope and incorporate local strengths and challenges.

Adults with Autism Spectrum Disorder (ASD): Service User Perspective on Ageing Transition(S)

The health, social, educational aspects as well as the research in treatment and diagnosis of Autistic Spectrum Disorder (ASD) have largely focused on the younger population. In contrast, very little is known about ageing with ASD. In order to address both the current knowledge about the ageing in ASD and the real needs of the ageing ASD subjects, we conducted a survey of 45 individuals who were either formal or informal carers of people with ASD or themselves had the diagnosis. Participants identified long-term management, diagnosis and awareness regarding ageing in ASD to be major topics for further work and investment rather than aetiology and treatment. They also identified two major themes for action: person-centred care (to include accurate diagnosis of ASD irrespective of age) and long-term support and care in community.