Putting a Dollar Value on Informal Care Time Provided to People Living With Dementia: A Discrete Choice Experiment.

OBJECTIVES: Informal care represents a significant cost driver in dementia but monetizing informal care hours to inform cost-of-illness or economic evaluation studies remains a challenge. This study aimed to use a discrete choice experiment to estimate the value of informal care time provided to people with dementia in Australia accounting for positive and negative impacts of caregiving. METHODS: Attributes and levels were derived from a literature review, interviews with carers, and advice received from an advisory group. Attributes included 4 positive and negative caregiving experiences, in addition to "hours of care provided" and the "monetary compensation from the government." A D-efficient design was constructed with 2 generic alternatives that represented hypothetical informal caregiving situations. The discrete choice experiment survey was administered online to a representative sample of the Australian general population and a group of informal carers of people with dementia. The willingness to accept estimates were calculated for the 2 samples separately using the mixed logit model in the willingness to pay space. RESULTS: Based on 700 respondents included in the analysis (n = 488 general public, n = 212 informal carers), the mean willingness to accept for an additional hour of informal care, corrected for the positive and negative impacts of informal care, was $21 (95% CI 18-23) for the general public and $20 (95% CI 16-25) for the informal carers sample. CONCLUSION: The estimates generated in this study can be used to inform future cost-of-illness studies and economic evaluations, ensuring that informal care time is considered in future policy and funding decisions.

Informal carer support needs, facilitators and barriers in transitional care for older adults from hospital to home: A scoping review.

AIM: To synthesise evidence about informal carers' (carers) experience of their support needs, facilitators and barriers regarding transitional care of older adults with multimorbidity. BACKGROUND: Carers provide crucial support for older adults during care transitions. Although health practitioners are well positioned to support carers, system factors including limited healthcare resources can compromise the quality of care transitions. DESIGN: Scoping review. METHODS: Searches were undertaken of the published literature. Five databases were searched including MEDLINE, CINAHL, EMBASE, PsycINFO and the Cochrane Library. Two reviewers independently screened articles to identify relevant studies. Studies were retrieved from January 2000 to July 2022. Data were extracted and tabulated for study characteristics, support needs, facilitators and barriers. Key themes and patterns were synthesised across the studies. RESULTS: Eighteen studies including N = 3174 participants were retrieved. Most studies (n = 13) employed qualitative designs. Five studies used surveys. Carers reported their need to: be involved in coordinated discharge planning; advocate and be involved in decision-making; and receive community-based follow-up. Carers described facilitators and barriers in four themes: (1) relationships with the older adult and health practitioners, (2) being involved in coordinated discharge planning; (3) communication and information strategies; and (4) community-based follow-up. Synthesis of themes across all studies resulted in the identification of five areas of research: carers' health literacy; community-based care; carers' involvement in transitional care planning; inpatient and community health practitioners' communication skills; and culturally diverse carers' experiences. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: The review highlights the importance of quality communication and relationships between carers, older adults, health practitioners and health organisations. Although information and education are important there is a need for further research to examine systems that support communication between carers, older adults and health practitioners and health literacy for all carers including culturally diverse carers.

How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?

PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. RESULTS: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. CONCLUSION: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.

Providing informal care to a person living with dementia: the experiences of informal carers in Australia.

Most people with dementia live at home and rely on family and friends who provide unpaid care and support. Informal carers of people with dementia are often described as 'invisible second patients', reflecting the higher-than-normal rates of depression, stress and physical illness. To inform service delivery and the development of evidence-based interventions targeting informal carers of people with dementia, it is important to understand their experiences. The aim of this study was to examine the experiences of caregivers in providing informal care to a person living with dementia and to examine how providing this care impacts their own quality of life. Semi-structured interviews were conducted with 16 informal carers in Australia. Recordings of the interviews were transcribed verbatim and analysed using an inductive approach (thematic analysis) which revealed strong narratives from informal carers regarding (1) available support, (2) the health impacts of caring, (3) new roles and responsibilities, and (4) the motivations around caring. The findings of this study reinforce that a comprehensive approach is needed in supporting informal carers in their caring role, ensuring sustainability of the aged care system and quality of life for people living with dementia.

Understanding the Quality of Life Impacts of Providing Informal Care to People with Dementia: A Systematic Review of Qualitative Studies.

BACKGROUND: There is currently a lack of a comprehensive review identifying the broad scope of factors that impact quality of life (QoL) of informal carers of people with dementia in order to validate existing measures and inform the provision of support services for carers of people with dementia that impact QoL domains important to them. OBJECTIVE: To explore and identify QoL impacts on informal carers from providing care to people with dementia. METHODS: A systematic review was conducted across four databases: EMBASE, CINAHL, PsychINFO, and Medline. Eligible studies consisted of published, peer-reviewed, qualitative studies focusing on lived experiences of informal carers of people with dementia. Non-English studies and quantitative studies were excluded. Screening of included studies was conducted independently by three reviewers. A "best-fit" framework synthesis was used to combine the qualitative data, applying deductive and inductive analysis techniques. Quality assessment was conducted using the Critical Appraisal Skills Programme. RESULTS: Of the 4,251 articles identified, 59 articles were included. Five main themes pertaining to QoL aspects were identified that included coping (emotion-coping and problem-coping), relationship with the person with dementia (sense of loss and change in relationship), support (formal support and informal support), interference with life (control over caring situation, and freedom and independence), and health (physical health, emotional and mental health, and social health). CONCLUSION: This study identified domains of QoL that are impacted by providing informal care to people living with dementia, offering a conceptual framework for instrument validation and development as well as guidance for service provision.

Head-to-Head Comparison of the Psychometric Properties of 3 Carer-Related Preference-Based Instruments.

OBJECTIVES: To compare the psychometric properties of the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer), the Carer Experience Scale (CES), and the Care-related Quality of Life (CarerQol) to inform the choice of instrument in future studies. METHODS: Data were derived from a 2018 online survey of informal carers in Australia. Reliability was assessed via internal consistency (Cronbach alpha, α) and test-retest reliability (intraclass correlation coefficient, ICC) for respondents who self-reported no change in their quality of life as a carer over 2 weeks. Convergent validity was evaluated via predetermined hypotheses about associations (Spearman's rank correlation) with existing, validated measures. Discriminative validity was assessed based on the ability of the carer-related scores to distinguish between different informal care situations (Mann-Whitney U, Kruskal-Wallis one-way analysis of variance). RESULTS: Data from 500 carers were analyzed. The ASCOT-Carer demonstrated a higher degree of internal consistency, possibly due to a unidimensional structure, and test-retest reliability than the CarerQol and CES (α = 0.87, 0.65, 0.59; ICC, 0.87, 0.67, 0.81, respectively). All 3 instruments exhibited convergent validity and detected statistically significant associations between carer-related scores and different informal care situations, except for the CarerQol-7D and sole carer status. CONCLUSIONS: The ASCOT-Carer, CarerQol, and CES performed reasonably well psychometrically; the ASCOT-Carer exhibited the best psychometric properties overall in this sample of Australian informal carers. Findings should be used in conjunction with consideration of research goals, carer population, targeted carer-related constructs, and prevailing perspectives on the economic evaluation to inform choice of instrument in future studies.

Measuring Carer Outcomes in an Economic Evaluation: A Content Comparison of the Adult Social Care Outcomes Toolkit for Carers, Carer Experience Scale, and Care-Related Quality of Life Using Exploratory Factor Analysis.

Background. To incorporate the spillover effects experienced by carers providing informal care in health policy decisions, new carer-related preference-based measures have been developed for use in economic evaluation, which include the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Carer Experience Scale (CES), and Care-Related Quality of Life (CarerQoL). The aim of this study was to investigate the extent to which these 3 instruments measure complementary or overlapping constructs. Methods. Data were derived from an online survey undertaken with carers residing in Australia. An exploratory factor analysis was conducted to ascertain the underlying latent constructs of the 3 measures. Results. Data from 351 informal carers yielded a 5-factor model describing general quality of life outside caring, problems due to caring, fulfilment from caring, social support with caring, and relationship with the care recipient. Most of the ASCOT-Carer and the CarerQol items loaded onto the first and second factors, respectively. The greatest overlap was observed between CarerQol and CES items loading onto the other 3 shared common factors. Limitations. Online data collection resulted in inconsistent responses, which had to be removed to yield logical data. A convenience sampling approach may have compromised the generalizability of study findings. Conclusion. Although some overlap was observed, the 3 carer-related preference-based measures seem to tap into different constructs of carer-related quality of life and caring experiences and cannot be used interchangeably.

Impacts of regulatory processes on the experiences of carers of people in LGBTQ communities living with mental illness or experiencing a mental health crisis.

This article presents the findings of exploratory research on the mental health and community services experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis. The aim of the research is to explore the experiences of carers in relation to provisions for carers and people from LGBTIQ communities in the mental health legislation, policy and practice standards in the state of Victoria in Australia. Data were collected from online surveys and in-depth interviews and analysed according to the alignment of the stated intent of these documents and the actual experiences of carers.

Carers of people from LGBTQ communities interactions with mental health service providers: Conflict and safety.

This exploratory study examines the experiences of informal/family carers of people from LGBTQ communities living with mental illness, or experiencing a mental health crisis, in relation to conflict and safety in their interactions with mental health service providers. Carers were surveyed to gain an understanding of their experiences of services. The data were analysed according to the six main originating domains in the Safewards model where conflict may arise as well as the nature of the activity in the domain with the addition of new categories of 'carer characteristics' and 'carer modifiers'. The study findings identified the main domains where conflict occurred, as well as modifications to activities undertaken by staff, consumers, and carers that reduced tensions and misunderstandings. Carer responses revealed the interplay between the Safewards domains and activities and the location of much of what was considered conflict with staff reflecting the regulatory environment services were provided in. This study highlights distinctive carer characteristics and the important conflict modifying role of carers. The findings suggest that the expansion of the Safewards model to include carers may be beneficial.