Physical and Mental Health of Informal Carers from Culturally and Linguistically Diverse (CALD) and Non-CALD Groups in Australia.

INTRODUCTION: Empirical evidence shows that many family carers, especially immigrants, experience considerable health disadvantages and poorer quality of life. Australia has a rapidly increasing multicultural population, officially referred to as Culturally and Linguistically Diverse (CALD) people. This paper explores similarities and differences in the carer profile and physical and mental health of CALD and non-CALD family carers. METHODS: A cross-sectional anonymous survey was conducted of self-reported family carers aged 18 years and older. Identical paper and online survey modes were provided to enable choice. Key variables included demographic and carer profile, diagnosed chronic physical health conditions, and validated scales such as CESD-12 and MOS-SF12, including derivative composite Physical and Mental Component Summary (PCS and MCS, respectively) scores. The sample comprised 649 participants (CALD = 347, non-CALD = 302). The analyses included univariate, bivariate, and multivariable linear regression analyses for three outcome variables: PCS, MCS, and CESD-12. RESULTS: CALD carers were comparatively younger and married, and 54% had university-level education (29% in the gfvnon-CALD group). Women were primary carers in both groups (67.4% versus 72.2%). The weekly care hours were higher for non-CALD carers. Both groups had below population-referenced scores for mean PCS and MCS values. For CESD-12, non-CALD respondents had higher scores (17.5 vs. 11.2, p < 0.022). Regression analyses showed significant differences for demographic, carer, and physical health variables across the three outcome variables. DISCUSSION AND CONCLUSION: Women have a higher domestic workload, which, when combined with high care hours, adversely impacts physical and mental health. The need for improved and culturally aligned care support systems is required.

Designing an mHealth application for informal carers concerning the management of behavioural and psychological symptoms of dementia: a need analysis survey.

BACKGROUND: Informal carers face difficulties and challenges when dealing with the behavioural and psychological symptoms of dementia (BPSD) of their family members or friends residing at home. Mobile health (mHealth) applications are promising for educating and supporting carers. However, needs analysis studies have not been conducted in Sri Lanka to develop mHealth applications for informal carers of people with dementia. AIMS: To explore the needs to design an mHealth application for informal carers of people with dementia concerning the management of BPSD. METHOD: An exploratory cross-sectional survey was conducted among a convenience sample (N = 203) of informal carers as a part of developing an mHealth application. Family members, relatives, or friends who lived with people with dementia and provided care on an unpaid basis for more than three months were included. The questionnaire included sociodemographic data, carer-rated prevalence and severity of BPSD, and informal carers' knowledge of dementia, carer burden, information-seeking sources, availability of smartphones, mHealth information seeking and perception of mHealth information seeking related to managing BPSD. Descriptive analysis and inferential tests were performed. RESULTS: Informal carers of people with dementia were predominantly female (70.4%), and 64% showed low knowledge of dementia. Of the participants, 35% reported a high carer burden, 53.7% reported a low burden, and only 11.3% reported no carer burden. Most of their care recipients (97%) had at least one BPSD. The prevalence and severity of BPSD were significantly and positively correlated with the carer burden. The participants' main source of information was health professionals. Most of them owned smartphones (63.5%), but none used mHealth applications for dementia-related information seeking. Approximately half of the respondents were ready to spend time (52.7%) and money (46.8%) on mHealth information seeking. Perceived mHealth usefulness was significantly associated with dementia knowledge, smartphone ownership, and readiness to spend time and money on mHealth information seeking. CONCLUSION: Informal carers of people with dementia were affected by BPSD in their care recipients. This study explored carers' educational needs concerning dementia, BPSD, and carer burden. Informal carers could adapt mHealth for dementia-related information seeking. Their unmet needs in managing BPSD should be explored.

The prevalence, characteristics, and psychological wellbeing of unpaid carers in the United Kingdom.

BACKGROUND: This study sought to describe the characteristics of unpaid carers in the UK and assess levels of depression, anxiety, and mental health treatment seeking behaviours in this population. METHODS: Data was derived from Wave 9 (n = 2790) of the COVID-19 Psychological Research Consortium (C19PRC) study, a longitudinal survey of adults in the UK. Logistic regression analyses were conducted to examine the characteristics of unpaid carers, association between caregiver status and psychological wellbeing, and caregiver-specific factors associated with risk of poor psychological wellbeing. RESULTS: Approximately 15% (n = 417) of the sample reported providing unpaid care. Younger age, having three or more children in the household, and lower income were identified as significant correlates of caregiver status. Unpaid caregivers were at increased risk of depression or anxiety and mental health help-seeking. Unpaid caregivers who were younger, lived in households with one or two children, and had a lower income were at greater risk of depression or anxiety and engaging in mental health help-seeking. Caring for an individual with a terminal illness, long-term illness, learning disability or difficulty, mental health problems, physical disability, and other were linked to increased risk of depression or anxiety, while caring for someone with a learning disability increased risk of mental health help-seeking. CONCLUSIONS: This study indicates that at least one in eight people in the UK provide unpaid care, and that those who provide unpaid care have a far higher risk of experiencing depression or anxiety and seeking mental health treatment. The identification of risk factors associated with these mental health outcomes will facilitate the identification of those in most need of support.

The evaluation of a decision support system integrating assistive technology for people with dementia at home.

Introduction: With a decreasing workforce of carers and a transition from care homes to home care, people with dementia (PwD) increasingly rely on informal caregivers (ICs) and assistive technologies (ATs). There is growing evidence that ATs in the home environment can reduce workload for formal carers (FCs) and ICs, reduce care costs, and can have a positive influence on quality of life (QoL) for PwD and their caregivers. In practice, using multiple ATs still often implies using different separate point solutions and applications. However, the integral, combined use of the data generated using various applications can potentially enhance the insight into the health and wellbeing status of PwD and can provide decision support for carers. The purpose of the current study was to evaluate the use of a DSS that integrated multiple ATs into one dashboard through a small-scale field study. Methods: The current study presents the formative evaluation of a Decision Support System (DSS) connected to multiple ATs. This DSS has been developed by means of co-creation during an international project. The DSS provides an insight into the physical and cognitive status of a PwD, as well as an insight into sleep activity and general wellbeing. Semi-structured interview sessions were held in three countries (Netherlands, Italy, and Taiwan) with 41 participants to gain insight into the experiences of formal and informal carers and PwD with both the ATs and the DSS Alpha prototype dashboard. Results: The results showed that participants using the DSS were satisfied and perceived added value and a fit with certain care demands from the PwD. In general, ICs and FCs have limited insight into the status of PwD living independently at home, and in these moments, the DSS dashboard and AT bundle can provide valuable insights. Participants experienced the DSS dashboard as well-organized and easy to navigate. The accuracy of the data displayed in the dashboard is important, the context, and (perceived) privacy issues should be tackled according to all users. Furthermore, based in the insight gained during the evaluation a set of design improvements was composed which can be used to further improve the DSS for the Beta evaluation. Discussion and conclusion: The current paper evaluates a possible solution for excess AT usage and how the use of a DSS which integrated multiple AT into one single technology could support caregivers in providing care for PwD. The formative evaluation scrutinized the integration of the developed DSS and the composed bundle of ATs across diverse cultural contexts. Insights from multi-center observations shed light on user experiences, encompassing overall usability, navigational efficacy, and attitudes toward the system. FCs and ICs expressed positivity toward the DSS dashboard's design and functionalities, highlighting its utility in remote monitoring, tracking changes in the person's abilities, and managing urgent situations. There is a need for personalized solutions and the findings contribute to a nuanced understanding of DSS and AT integration, providing insights for future developments and research in the field of DSS for the care of PwD.

Implementation of an Arts at Home program for people living with dementia: Learnings from key stakeholders.

ISSUE ADDRESSED: This study explores experiences of people with dementia and family carers who participated in an Arts on Prescription at Home (AoP@Home) program, artists who delivered the AoP@Home program and the managers who coordinated the AoP@Home programs. METHODS: Semi structured interviews were conducted with the three stakeholder groups to explore experiences around implementation of AoP@Home. Interview questions were specific to each stakeholder group, and designed to capture the varied experiences around coordinating, delivering and participating in AoP@Home programs when delivered as a standard service offering. Qualitative content analysis was applied to evaluate the transcripts. RESULTS: A total of 13 stakeholders participated in interviews: four people living with dementia and four family carers, three artists and two AoP program managers. Three overarching themes emerged across the stakeholder groups: 'what worked well', 'challenges' and 'moving forward'. CONCLUSIONS: AoP@Home has potential as an important offering for community-dwelling people with dementia who may no longer be able to access group-based community programs. As AoP@Home is expanded, ongoing implementation monitoring and quality improvement will be essential to ensure maximal applicability of the program across the community aged care sector. SO WHAT?: The implementation of a new AoP@home service has been examined, and finds consumer satisfaction (person with dementia and their carer), and support from staff (artists and program managers). The novel nature of the service, however, requires considerable work to educate service referrers about the service and its benefits.

The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

"I am the one taking care of her and donating blood": lived experiences of role-routines of hospital-based informal caregiving in Nigeria.

PURPOSE: Informal caregivers (ICs) in Africa perform a long list of tasks to support hospitalization care. However, available studies are weak in accounting for the experiences of everyday role-routines of hospital-based informal caregiving (HIC) in under-resourced settings. This article explored the experiences of role-routines among informal caregivers in a Nigerian tertiary health facility. METHODS: The ethnographic exploratory study relied on primary data collected from 75 participants, including 21 ICs, 15 inpatients, 36 hospital staff, and 3 ad-hoc/paid carers in a tertiary health facility in Southwestern Nigeria. RESULTS: ICs perform several essential roles for hospitalized relatives, with each role characterized by a range of tasks. An integrative narrative of everyday routines of HIC as experienced by ICs showed critical complexities and complications involved in seemingly simple tasks of assisting hospitalized relatives with hygiene maintenance, medical investigations, blood donation, resource mobilization, errand-running, patient- and self-care and others. The role-routines are burdensome and ICs' experiences of them revealed the undercurrents of how health systems dysfunctions condition family members to support hospitalization care in Nigeria. CONCLUSION: The intensity and repetitive nature of role-routines is suggestive of "routinization of suffering". We recommend the closing of gaps driving hospital-based informal caregiving in Africa's under-resourced settings.

Loneliness and social isolation among informal carers of individuals with dementia: A systematic review and meta-analysis.

OBJECTIVES: This systematic review and meta-analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing factors. METHODS: We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta-analysis. Subgroup analyses and meta-regression were employed to explore potential moderating variables and heterogeneity. RESULTS: The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%-59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%-47.6%). Subgroup analyses and meta-regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools. CONCLUSIONS: This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population.

Mental health and wellbeing in mesothelioma: A qualitative study exploring what helps the wellbeing of those living with this illness and their informal carers.

PURPOSE: Mesothelioma is an incurable, asbestos related cancer with a poor prognosis. Little is known about how patients and carers living with the condition manage their mental health and wellbeing needs. This paper reports findings on interventions being used by patients and informal carers living with mesothelioma and those which they find most helpful. METHODS: In-depth interviews with patients (n = 10) and (informal) carers (n = 11) living with mesothelioma in the UK. We analysed our data inductively using a reflexive thematic analysis approach. RESULTS: Participants described the importance of both smaller and larger actions and strategies which helped with their mental health. This included spending more time with family and friends and going on holidays. Professionals who participants said supported their mental health journey included not only specialist nurses and mental health professionals but also legal and Asbestos Support Group professionals. The latter demonstrates the unique needs and support required for this population. Exposure to asbestos as the cause of mesothelioma, has led to a social justice aspect of the experience of living with this cancer. Participants reported the importance of collective action to their mental health and wellbeing. The data indicate that patients and carers may have distinct mental health and wellbeing requirements and need to manage these in different ways at different times. CONCLUSIONS: Findings have implications for nurses and other key professionals working in healthcare, community and legal settings supporting this client group, and for those living with mesothelioma who want to understand ways to enhance their own wellbeing.

Patients with mesothelioma and their carer's experience of diet and appetite: A qualitative insight from the Help-Meso Study.

BACKGROUND: People living with mesothelioma have a high symptom burden that can affect dietary intake and the development of malnutrition, subsequently impacting on patient-related and treatment outcomes. The present study aimed to develop a better understanding of the experiences of diet and appetite in people living with mesothelioma and their informal carers. METHODS: Twenty-three participants took part in semistructured interviews including 12 people living with mesothelioma (10 pleural and 2 peritoneal) aged 56-83 years and 12 informal carers, predominantly their spouses. Open ended questions focussed on experiences of appetite and diet, as well as approaches to maintain adequate food intake. Thematic analysis was applied. RESULTS: Four themes were generated that included unintentional weight loss and poor appetite during diagnosis and when undergoing medical intervention. Participants managed their appetite and diet by taking each day at a time and this was influenced by the physical and emotional experiences of mesothelioma. The informal carer took on the lead role of managing their relatives' diet and implemented their own nutritional strategies and there were challenges with dietary advice. CONCLUSIONS: Appetite was viewed as a multidimensional experience and was grounded within the biopsychosocial model. The findings offer important insights into opportunities informing the development of effective interventions that provide meaningful benefits for individuals living with mesothelioma and their family.

Navigating complexity of the medication management system within the home setting-a functional resonance analysis method (FRAM) analysis of people with dementia and their carers' experiences.

BACKGROUND: There is a strong imperative to support people with dementia to live independently in their homes for as long as possible. A starting point is to understand how they manage medications on a daily basis. AIM: To understand how people with dementia and their informal carers manage medications within the home setting to inform the identification of opportunities to improve medication management. METHODS: A qualitative study using the Functional Resonance Analysis Method (FRAM). Interview data with people with dementia and informal carers were analysed to (i) Identify and describe key functions, (ii) identify and describe variability in performing key functions, and its potential consequences and (iii) map performance variability to Resilient Healthcare capacities. RESULTS AND DISCUSSION: A FRAM model was developed and consisted of 14 interdependent key functions. The interdependent nature of functions, and the different nature and sources of variability in how each key function was performed highlighted the level of complexity of the medication management system within the home setting. The medication system was managed almost entirely by the person with dementia and/or their informal carers. This shows the lack of system-level controls to support the safe functioning of the medication management system in the home setting. CONCLUSION: Future work will develop a comprehensive FRAM model that includes the perspectives of health and social care professionals and those from the third sectors to underpin the development of a range of system recommendations to strengthen resilience in the medication management system within the home setting.

Developing a best-practice agenda for music therapy research to support informal carers of terminally ill patients pre- and post-death bereavement: a world café approach.

BACKGROUND: Informal carers of terminally ill patients play a vital role in providing palliative care at home, which impacts on their pre- and post-death bereavement experience and presents an up to 50% greater risk for mental-health problems. However, developing and implementing effective bereavement support remains challenging. There is a need to build the evidence base for music therapy as a potentially promising bereavement support for this vulnerable population. This study aimed to co-design an international best practice agenda for research into music therapy for informal carers of patients pre- and post-death bereavement. METHODS: Online half day workshop using a World Café approach; an innovative method for harnessing group intelligence within a group of international expert stakeholders (music therapy clinicians and academics with experience of music therapy with informal carers at end-of-life). Demographics, experience, key priorities and methodological challenges were gathered during a pre-workshop survey to inform workshop discussions. The online workshop involved four rounds of rotating, 25-minute, small group parallel discussions using Padlet. One final large group discussion involved a consensus building activity. All data were analysed thematically to identify patterns to inform priorities and recommendations. RESULTS: Twenty-two consented and completed the pre-event survey (response rate 44%), from countries representing 10 different time zones. Sixteen participated in the workshop and developed the following best practice agenda. The effectiveness of music therapy in supporting informal carers across the bereavement continuum should be prioritised. This should be done using a mixed methods design to draw on the strengths of different methodological approaches to building the evidence base. It should involve service users throughout and should use a core outcome set to guide the choice of clinically important bereavement outcome measures in efficacy/effectiveness research. CONCLUSIONS: Findings should inform future pre- and post-death bereavement support research for informal caregivers of terminally ill patients. This is an important step in building the evidence base for commissioners and service providers on how to incorporate more innovative approaches in palliative care bereavement services.

Steps to implementation: Understanding barriers and enablers for implementing Arts on Prescription at Home for people impacted by dementia.

ISSUE ADDRESSED: Arts on Prescription at Home (AoP@Home) involves a professional artist visiting a person with dementia and their informal carer(s) in their own home to engage them in participatory art making. While there is evidence for the use of these programs, more work is needed to facilitate effective implementation. This study explored contextual barriers and enablers to implementation of AoP@Home within a real-world community aged care service. METHODS: Two remote focus groups were conducted at a community aged care provider in Sydney, Australia. Key stakeholders (n = 14) were recruited, representing: people with dementia, informal (family) carers, AoP artists, service referrers and community service managers. Focus group transcripts were analysed using qualitative content analysis and mapped onto the Consolidated Framework for Implementation Research (CFIR). Outcomes were reviewed against the Expert Recommendations for Implementing Change (ERIC) strategy compilation to inform development of a tailored implementation strategy. RESULTS: Four overarching themes described the range of barriers and enablers to AoP@Home implementation: (1) "I don't know enough about it" (awareness and engagement within the sector), (2) artists delivering programs, (3) awareness and engagement of people impacted by dementia, (4) practicalities of implementation. All five domains of the CFIR were represented across the four themes. The ERIC compilation provided a list of practical strategies for implementation of AoP@Home. CONCLUSIONS: The implementation of psychosocial interventions for people living with dementia within a community aged care service is complex and multifactorial. So what?: Organisations planning implementation should consider conducting their own pre-implementation analysis to identify context-specific strategies.

Navigating Community-Based Aged Care Services From the Consumer Perspective: A Scoping Review.

BACKGROUND AND OBJECTIVES: The shift to consumer-directed aged care means that older adults need to play a more active role in navigating the complex aged care system for adequate health and social services. Challenges in the navigation process result in unmet needs and difficulty accessing available resources. This scoping review investigates how aged care navigation is conceptualized in literature and interrogates research on the experiences of older adults navigating community-based aged care services with or without support from their informal carers. RESEARCH DESIGN AND METHODS: This review follows the Joanna Briggs Institute methodological guidelines. PubMed, Scopus, and ProQuest were searched for relevant literature published from 2008 to 2021, supplemented by grey literature and manual reference list searching. Data were extracted using a predefined data-extraction table and synthesized with an inductive thematic analysis. RESULTS: The current conceptualization of aged care navigation focuses on the support provided to older adults, rather than actions taken by older adults themselves. Thematic analysis from the included studies (n = 26) revealed shared themes (lack of knowledge, social networks as information providers, complex care systems) among older adults and informal carers; unique challenges faced by older adults (difficulties with technology, waiting game), and informal carers (structural burden) in aged care navigation. DISCUSSION AND IMPLICATIONS: Findings suggest the need to comprehensively assess individual circumstances including social networks and access to informal carers as predictors of successful navigation. Changes that reduce the complexity of the aged care system and improve coordination will relieve the structural burden experienced by consumers.

Being a Young Carer in Portugal: The Impact of Caring on Adolescents' Life Satisfaction.

Caring for an ill or disabled relative can present significant challenges that may exceed the personal resources of the caregiver. Young carers (YCs) often take on this role, providing support to family members or friends, which can have far-reaching effects on various aspects of their lives. This study involved 235 adolescents, 106 YCs, and 129 non-carers (NCs), who completed questionnaires assessing life satisfaction, satisfaction with social support, family functioning, academic functioning, and caregiving activities. Tests of group differences (MANOVA and MANCOVA controlling for age) showed YCs had more caregiving activities than NCs (as expected) and, critically, significantly lower life satisfaction. Hierarchical regressions with the YCS subsample showed academic functioning, social support, and the negative impact of caregiving were associated with life satisfaction, and that the negative influence of caregiving was linked to family functioning and the quantity of caregiving activities. For NCs, academic functioning, satisfaction with social support, and family functioning were associated with life satisfaction. In conclusion, caregiving in adolescents appears to be linked to lower life satisfaction, but this effect is determined by their social support, academic functioning, and negative impact of caring, which in turn depends on their family functioning and amount of caring activities.

Needs of multimorbid heart failure patients and their carers: a qualitative interview study and the creation of personas as a basis for a blended collaborative care intervention.

Introduction: Involving patients and carers in the development of blended collaborative care (BCC) interventions for multimorbid heart failure (HF) patients is recommended but rarely practised, and research on the patient perspective is scarce. The aim of this study is to investigate patients' and carers' care-related needs and preferences to better customize a novel international BCC intervention. Methods: A qualitative study design using framework analysis was employed. The study was performed in accordance with the EQUATOR standards for reporting qualitative research (SRQR). Patients aged at least 65 years with HF and at least two other physical diseases as well as their carers completed semistructured interviews in Germany, Italy, and Denmark. Based on these interviews, personas (prototype profiles of patients and carers) were created. Results: Data from interviews with 25 patients and 17 carers were analysed. Initially, seven country-specific personas were identified, which were iteratively narrowed down to a final set of 3 personas: (a) the one who needs and wants support, (b) the one who has accepted their situation with HF and reaches out when necessary, and (c) the one who feels neglected by the health care system. Carers identifying with the last persona showed high levels of psychological stress and a high need for support. Discussion: This is the first international qualitative study on patients' and carers' needs regarding a BCC intervention using the creation of personas. Across three European countries, data from interviews were used to develop three contrasting personas. Instead of providing "one size fits all" interventions, the results indicate that BCC interventions should offer different approaches based on the needs of individual patients and carers. The personas will serve as a basis for the development of a novel BCC intervention as part of the EU project ESCAPE (Evaluation of a patient-centred biopSychosocial blended collaborative CAre Pathway for the treatment of multimorbid Elderly patients).

Uptake and Use of Care Companion, a Web-Based Information Resource for Supporting Informal Carers of Older People: Mixed Methods Study.

BACKGROUND: Informal carers play a major role in supporting relatives and friends who are sick, disabled, or frail. Access to information, guidance, and support that are relevant to the lives and circumstances of carers is critical to carers feeling supported in their role. When unmet, this need is known to adversely affect carer resilience and well-being. To address this problem, Care Companion was co-designed with current and former carers and stakeholders as a free-to-use, web-based resource to provide access to a broad range of tailored information, including links to local and national resources. OBJECTIVE: This study aimed to investigate the real-world uptake and use of Care Companion in 1 region of England (with known carer population of approximately 100,000), with local health, community, and social care teams being asked to actively promote its use. METHODS: The study had a convergent parallel, mixed methods design and drew on the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework. Data included metrics from carers' use of Care Companion, surveys completed by users recruited through general practice, and interviews with carers and health and social care providers regarding their views about Care Companion and their response to it. Quantitative data were analyzed using descriptive statistics. Interview data were analyzed thematically and synthesized to create overarching themes. The qualitative findings were used for in-depth exploration and interpretation of quantitative results. RESULTS: Despite awareness-raising activities by relevant health, social care, and community organizations, there was limited uptake with only 556 carers (0.87% of the known carer population of 100,000) registering to use Care Companion in total, with median of 2 (mean 7.2; mode 2) visits per registered user. Interviews with carers (n=29) and stakeholders (n=12) identified 7 key themes that influenced registration, use, and perceived value: stakeholders' signposting of carers to Care Companion, expectations about Care Companion, activity levels and conflicting priorities, experience of using Care Companion, relevance to personal circumstances, social isolation and networks, and experience with digital technology. Although many interviewed carers felt that it was potentially useful, few considered it as being of direct relevance to their own circumstances. For some, concerns about social isolation and lack of hands-on support were more pressing issues than the need for information. CONCLUSIONS: The gap between the enthusiastic views expressed by carers during Care Companion's co-design and the subsequent low level of uptake and user experience observed in this evaluation suggests that the co-design process may have lacked a sufficiently diverse set of viewpoints. Numerous factors were identified as contributing to Care Companion's level of use, some of which might have been anticipated during its co-design. More emphasis on the development and implementation, including continuing co-design support after deployment, may have supported increased use.

Designing Inclusive Qualitative Research with Carers of People Living with Dementia: Methodological Insights.

The support provided by carers of people living with dementia results in savings for the UK economy; however, providing this care has a significant impact on carers. Supports are needed to ensure that carers can continue to provide care, and carers should be involved in the generation of the evidence necessary to develop such support. However, this relies on their ability to meaningfully engage with research, yet current data collection methods create obstacles to engagement. In this paper, we aim to provide a critical examination of approaches to qualitative data collection with carers and produce recommendations for the design of inclusive research. First, different approaches to qualitative data collection are discussed and appraised. Following this, a case study of inclusive research is presented, illustrating how carers can be facilitated to engage in research. Finally, recommendations for inclusive research are offered, including the collection of data without the cared-for person present, building additional care into a study design, providing 'incidental funds,' offering sustenance and remuneration, and undertaking research in a neutral space. These recommendations are designed to facilitate the involvement of carers in research and promote the use of more varied or multifaceted methods to develop the current evidence base.

An Exploratory Study of Nutrition Knowledge and Challenges Faced by Informal Carers of Community-Dwelling People with Dementia: Online Survey and Thematic Analysis.

Nutrition knowledge is a primary factor influencing food choices and the ability to identify nutritional risk for carers of people with dementia. Acquiring nutrition knowledge helps carers monitor changes in food intake and micronutrient intake, and whether a healthy and balanced diet is being consumed. This study aimed to assess the nutrition knowledge of carers in the Australian community and their experiences with nutrition education. Using a mixed-methods approach, the nutrition knowledge of informal carers was assessed using the revised General Nutrition Knowledge Questionnaire (AUS-R-NKQ), and interviews of informal carers were used to explore the perspectives in a sub-sample. A total of 57 carers (44 females; mean age of 63.0 ± 13.1) completed the survey, and 11 carers participated in follow-up interviews. The total sample scored 22.9 (±4.57) out of 38 on the AUS-R-NKQ, suggesting basic nutrition knowledge. The interviewed carers acknowledged the importance of healthy nutrition but viewed the provision of a healthy diet for a person with dementia as challenging. In both the survey and interviews, carers reported limited use and availability of dementia-specific nutrition resources. Carers were unsatisfied with the advice and number of referrals provided to improve the nutrition of the person with dementia and desired less confusing nutrition education materials adapted to their level of knowledge. The present study highlights the need for informal carers to be supported to acquire adequate nutrition knowledge.

Strategies for Alleviating the Burden Experienced by Informal Caregivers of Persons With Severe Mental Disorders in Transitional Countries: Protocol for a Scoping Review.

BACKGROUND: Caregiver burden is highly prevalent among the informal caregivers of persons with severe mental disorders (SMDs). As such, strategies to support informal caregivers are necessary to enable them to cope with their caregiving role. Currently, there is limited evidence on the extent of existing strategies for supporting informal caregivers of persons with SMDs in transitional countries. OBJECTIVE: This study presents a scoping review protocol to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. METHODS: This scoping review will be conducted using the Joanna Briggs Institute's methodology for scoping reviews. The participants, concept, and context framework will be used to select relevant studies. This review will include studies on strategies for addressing caregiver burden among informal caregivers, with a specific focus on studies outlining caregiver interventions, caregiver support, and policies with strategies for supporting informal caregivers of persons with SMDs. Relevant studies conducted in transitional countries will be considered for inclusion. There will be no restrictions on publication type or design. Published literature will be accessed by searching electronic databases, including PubMed, MEDLINE, CINAHL, and PsycINFO; ProQuest will be used to access gray literature. Additionally, the reference lists of key studies will be reviewed to identify studies for inclusion. The search will be restricted to articles published between 2011 and 2021. Two reviewers will work independently to screen all abstracts and full texts for inclusion in line with the set inclusion criteria. Extracted data will be categorized and described using descriptive qualitative content analysis. RESULTS: This protocol will guide a scoping review to identify and describe the extent and type of evidence on the existing strategies for alleviating caregiver burden among informal caregivers of persons with SMDs in transitional countries. The main results of this scoping review will synthesize evidence from peer-reviewed and gray literature sources outlining various services and interventions for supporting informal caregivers of people with SMDs in transitional countries. In addition, existing gaps in the literature will be identified to inform future studies. CONCLUSIONS: The increase in caregiver burden among informal caregivers in mental health warrants the development and implementation of strategies for alleviating the burden. This scoping review aims to increase awareness on the various services and intervention strategies for alleviating burden among informal caregivers in transitional countries. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/44268.