Development and preliminary validation of a questionnaire on the care needs of family carers of older individuals with disabilities in China: a mixed methods study.

BACKGROUND: Ensuring the wellness of older individuals with disabilities requires prioritising the care needs of their carers. However, current practice lacks validated tools to measure the needs of carers in home environments. Thus, this study aimed to create and test a questionnaire on the care needs of family carers of older people with disabilities in China. METHODS: We used a standard development process to generate the questionnaire. The pilot testing included cognitive interviews to ensure interpretation as intended. Furthermore, we used a cross-sectional study method to conveniently select 640 Chinese family carers of older people with disabilities from August 1, 2022, to June 11, 2023, for face-to-face investigation. Exploratory factor analysis (EFA) aided in project reduction and factor estimation, with 30 participants undergoing retest evaluations every two weeks. Confirmatory factor analysis (CFA) assessed the model's structural validity, while internal consistency and retest reliability validated its accuracy. RESULTS: These tests established the model: content validity, item analysis and EFA. Six factors extracted from the initial analysis explained 62.891% of the observation variance. CFA showed good model fit, and the questionnaire had good reliability and validity. The final questionnaire included 21 items focusing on six dimensions: care assistance (three items), care environment (three items), care information (three items), formal support (four items), care ability (six items) and self-development (two items). CONCLUSION: The care needs questionnaire effectively evaluates the needs of family carers in their caring activities.

Experiences of family carers supporting older people within the last year of life in rural and remote areas in the UK.

BACKGROUND: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life. AIM: To explore the experiences of current and bereaved family carers who support/ed an older person in a rural area in the UK towards the end-of-life. DESIGN: Qualitative methodology using semi-structured interviews and reflexive thematic analysis methods. METHOD: Interviews were conducted with family carers of rural/remote-dwelling older people in the last year of life. Participants were recruited through national support services, third sector organisations and social media. RESULTS: Interviews were conducted with 20 family carers. Most were female (n = 17) and aged 52-80 years. Family carers experienced difficulties in accessing health and social care in rural/remote areas due to workforce and skills shortages within their regions. The wider community helped with practical tasks and made carers feel less alone. Community-based services, such as day care, helped to provide respite for carers and promoted meaningful activity and social inclusion for older people. Although internet access was problematic, family carers gained support remotely via social media and telehealth services. CONCLUSION: Family carers of older people in the last year of life in rural/remote areas value support from the wider community. Further work is required to understand how Public Health approaches to palliative care and workforce distribution can support rural/remote carers and older people.

Carer Perspectives About the Acceptability and Usability of the TRANSITION Tool to Support Preparation for Older Adult Care Transitions: A Qualitative Study.

INTRODUCTION: Transitional care of older adults can be highly stressful for informal carers (carers) particularly when they are not involved in preparation and planning with health practitioners. This study aimed to ascertain carer perspectives about the potential acceptability and usability of a tool entitled the TRANSITION tool to support preparation and planning for the transition of an older adult from hospital to home. DESIGN: Exploratory qualitative. METHODS: Semi-structured interviews were undertaken between March 2020 and October 2021. A focus group was conducted in July 2022 to seek additional information and support data saturation. A total of 23 participants took part. Data were thematically analysed. FINDINGS: Participants explained their perspectives about the tool in four themes: (1) the TRANSITION tool has value, but health practitioners ask the questions; (2) the TRANSITION tool would be useful and acceptable, but not for all carers; (3) interacting with health practitioners is a barrier to using the tool and to communication; and (4) recognising us as part of the care team. CONCLUSIONS: While the tool was found to have potential value and utility, it would only be expected to support carers when they are valued and respected by health practitioners. Leadership is required in healthcare organisations to support genuine care for older adults and their carers, and to enable health practitioners to have time for transitional care communication. IMPLICATIONS FOR PRACTICE: The findings from the study suggest that the TRANSITION tool could support carers by prompting them about important areas of care to include in communication with health practitioners during discharge preparation.

Mind-body practices for people living with dementia and their family carers: a systematic review.

INTRODUCTION: People with dementia and their family carers may benefit from non-pharmacological interventions, including mind-body (MB-) practices, which can improve physical and mental health by inducing relaxation. This systematic review provides an overview of availability and effects of MB-practices. CONTENT: The authors performed a systematic search in PubMed, Embase, Emcare, Web of Science, Cochrane Library, PsycINFO, China National Knowledge Infrastructure and Academic Search Premier on February 1, 2024. Research papers on MB-practices for people with dementia and/or their family carers in English, Chinese, Japanese, German, French and Dutch were included if a full text was available. Selection of included articles, data extraction and methodological quality assessments were conducted by two researchers. SUMMARY: Of the 130 included studies, 100 (77 %) were of high quality. Traditional Chinese Medicine (TCM) and touch interventions for people with dementia, and meditations for family carers resulted in improvements in respectively cognition and neuropsychiatric symptoms, and mental health. Lack of evidence for other MB-practices is related to small numbers of studies, fragmented use of outcome measures and mixed findings. OUTLOOK: MB-practices showed promising results. We recommend implementation and further research of TCM- and touch interventions for people with dementia as well as meditations for family carers. We suggest a cross-over of the promising results of one group to be studied in the other group.

Effectiveness of Online Programmes for Family Carers of People with Intellectual Disabilities: Systematic Review of the International Evidence Base.

This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.

Experiences of family carers in providing care to children with intellectual disabilities in India: A qualitative evidence synthesis.

BACKGROUND: India has a significant prevalence of people with intellectual disabilities. Despite their higher prevalence, they receive poor support. Therefore, this review aims to explore the experiences of family carers in providing care for children with intellectual disabilities in India. METHODS: A qualitative evidence synthesis was undertaken, searching databases such as MEDLINE, CINAHL, Web of Science, and PsycInfo up to October 2023. Grey literature was also searched for unpublished studies, with two reviewers assessing methodological quality. Eleven eligible studies, mostly qualitative in design, were included in the review. The data synthesis followed a thematic approach. RESULTS: The synthesis found five themes representing family carers' experiences and perspectives. These were 'resilience and acceptance', 'parental response', 'care dynamic', 'preparing for transition to adulthood' and 'parental advocacy'. CONCLUSION: Family carers hold diverse views, while almost all consider providing care complex and challenging, with few positive experiences.

'Talking lines': the stories of diagnosis and support as told by those with lived experience of rare forms of dementia.

BACKGROUND: People living with, or caring for someone with, rare forms of dementia can encounter issues while obtaining a diagnosis and trying to access appropriate support. This can affect their wellbeing, quality of life, social relationships and employment status. This study makes use of an arts-based narrative approach to explore individual accounts of these experiences whilst also exploring how, in telling their stories, those affected by rare forms of dementia might invoke, and situate their stories in relation to, broader cultural narratives around dementia and illness. METHODS: Semi-structured interviews were conducted via video-conferencing software with participants (N = 27), living with, or caring for someone with, a rare forms of dementia. Participants used line drawings to depict their journey from initial symptoms to the present day, followed by prompts to verbally narrate their experiences. All interview transcripts and line drawings were subjected to narrative analysis. Four sets of transcripts and drawings were then subjected to more in-depth analysis. RESULTS: Analysis shed light on the struggles encountered by both care-partners and people with a diagnosis, while navigating a health and social care system that does not always understand their needs. This often led to individuals feeling isolated and unsupported. Accounts also depicted challenges to identity brought on by the process. The moment of diagnosis was also drawn in a complicated light. Individuals found comfort in gaining understanding, but felt fear at recognising upcoming challenges. Participants situated their own accounts against mainstream cultural narratives around what good support for cognitive impairment and dementia might look like, whilst also demonstrating the influential role they took on in pursuing the right care. CONCLUSIONS: The use of line drawing, alongside narrative interviews, allowed participants to tell complicated, sometimes anachronistic, stories about difficult experiences, whilst also reflecting on, and attaching meaning to, them. These stories highlighted pressing gaps in healthcare services and shone a light on the various pieces of collective action individuals were engaged in in order to improve them. Finally, in modelling some elements of the participants' service provision which were working, the narratives pointed to future directions services might move in.

Chatting: Family Carers' Perspectives on Receiving Support from Dementia Crisis Teams.

Family caregivers are vital to enabling people with dementia to live longer in their own homes. For these caregivers, chatting with clinicians-being listened to empathetically and receiving reassurance-can be seen as not incidental but important to supporting them. This paper considers and identifies the significance of this relational work for family carers by re-examining data originally collected to document caregivers' perspectives on quality in crisis response teams. This reveals that chatting, for family caregivers, comprises three related features: (i) that family caregivers by responding to a person's changing and sometimes challenging needs and behaviors inhabit a precarious equilibrium; (ii) that caregivers greatly appreciate 'chatting' with visiting clinicians; and (iii) that while caregivers appreciate these chats, they can be highly critical of the institutionalized character of a crisis response team's involvement with them.

Community support for families affected by dementia.

This paper provides and overview of the community support services that may be available for people with dementia and their family carers. The authors introduce dementia, including the impact of the diagnosis on both the person with dementia and the wider family. Using a case study approach, the authors describe the support available, spanning health and social care and third sector organisations. They discuss how this support can enable people with dementia and their carers to maintain wellbeing and cope with the impact of dementia. This article will be of interest to community nurses, and health and social care professionals more generally, who may encounter families affected by dementia in community settings. Having a good knowledge of the support available and how to access it will allow community nurses to capitalise on the health promotion opportunities presented to them, when they come into contact with families affected by dementia in the course of their day-to-day practice.

Risk and dementia.

People with dementia and their family carers may be subject to a number of different risks; these risks may overlap with, and impact on one another. Due to changes in capacity that come with dementia, people with the diagnosis may be overly cautious about decisions made relating to risk made on their behalf, and this may have a negative impact on their wellbeing and quality of life. This article aims to educate community nurses on the risks they need to be aware of when working with families affected by dementia, and presents a risk enablement framework as a way of assessing and managing risk in a person-centred way.

Tailored videoconferencing counselling program to support family carers of people living with dementia during the transition to permanent residential care: a pilot and feasibility randomised trial.

BACKGROUND: Decisions surrounding the permanent residential care placement of people living with dementia can be stressful and distressing; however, providing access to targeted information and support prior to placement may help carers better cope. This mixed methods study aimed to test the feasibility, acceptability, and potential benefits of providing a tailored, individual counselling program (the Residential Care Transition Module), delivered via videoconferencing, to Australian family carers of a relative with dementia during the transition to permanent residential care. METHODS: A total of 18 family carers were randomly allocated to receive either the counselling intervention (six sessions delivered over 12 weeks) or a check-in call, delivered by a trained Transition Counsellor. Both groups received help-sheets about residential care, coping with placement, and managing feelings. Carers completed online surveys about stress, guilt, anxiety, depression, grief, and support for caring at baseline and four months post-baseline. Carers were also invited to participate in semi-structured exit interviews, conducted after follow-up surveys were completed. Process data relating to recruitment, retention, intervention dose and delivery were collected via logs. Quantitative data were analysed using descriptive statistics and repeated measures ANOVA. Qualitative data, relating to feasibility, acceptability, and perceived benefits of the program, were analysed using the 'framework' approach developed by the Medical Research Council to inform the process evaluation of complex interventions. RESULTS: Qualitative findings indicated that delivery of the counselling program during the transition period was deemed by participants to be feasible and acceptable. Delivery via videoconferencing was deemed convenient and acceptable, with few technical issues. The skills and knowledge of the Transition Counsellor were perceived to be important mechanisms of impact. Though not statistically significant, promising quantitative findings were identified in terms of reduced carer stress and guilt and improved support for caring. CONCLUSIONS: Delivery of a tailored counselling program via videoconferencing to family carers of people living with dementia during the transition to residential care was feasible and acceptable. The program has the potential to improve transitional support to family carers. TRIAL REGISTRATION: This study was registered in the Australian New Zealand Clinical Trials Registry: ACTRN12621001462875.

Language Learning for People Living with Dementia and Their Caregivers: Feasibility and the Quality of Experience.

BACKGROUND: A body of research from around the world has reported positive effects of bilingualism on cognitive ageing and dementia. However, little is known about whether foreign language learning could be applied as an intervention for people already living with dementia. Yet, before it is possible to determine the efficacy of language courses as an intervention for people living with dementia (PLWD), it is necessary to establish whether such an intervention is feasible. Our study explored this possibility. METHODS: We conducted an exploratory study to examine the feasibility and tolerability of 2-week Italian beginner courses for PLWD in early stages and their family carers in two Scottish Dementia Resource Centres (DRCs). The courses were delivered by trained tutors from Lingo Flamingo, a social enterprise specialising in language teaching for older learners and learners with dementia. Twelve PLWD and seven carers participated in the study. Focus groups preceded and followed the courses. Additional post-course open interviews with the DRC managers were conducted, with a follow-up via telephone approximately one year later. RESULTS: Qualitative content analysis resulted in 12 themes, 5 reflected in the interview schedule and 7 arising from the focus groups and interviews. Overall, the courses were perceived positively by PLWD, carers, and DRC managers, although a few logistically and linguistically challenging aspects were also mentioned. The courses were found to positively impact both the individual by increasing self-esteem and producing a sense of accomplishment as well as the group by creating a sense of community. Notably, no adverse effects (in particular no confusion or frustration) were reported. CONCLUSION: The positive outcomes of our study open a novel avenue for future research to explore foreign language training in dementia as an intervention and its implications.

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers.

BACKGROUND: It is unclear when people with amyotrophic lateral sclerosis and their family carers think about their future, what they would prefer in terms of care, and how their ideas change over time. AIM: Understanding experiences with advance care planning of persons with amyotrophic lateral sclerosis and their family carers-and if, when, how, and why these experiences change over time. DESIGN: A qualitative longitudinal interview study. Analysis involved content analysis, followed by a two-step timeline method to describe changes in advance care planning experiences within and across participants. SETTING/PARTICIPANTS: Nine persons with amyotrophic lateral sclerosis and nine family carers who were interviewed three times over a 9-month period. RESULTS: All participants thought about future care, but few talked about it. Over time, advance care planning experiences were influenced by intertwined elements: (1) experienced physical decline and related future care needs; (2) how persons with amyotrophic lateral sclerosis identify themselves as patients; (3) obtaining information about diagnosis and prognosis; (4) professionals initiating conversations about medical aspects of end-of-life decisions; (5) balancing between hope to remain stable and worry about the future; and (6) protecting themselves and each other from worries about the future. CONCLUSION: This study emphasizes how factors such as coping with the disease and relational dynamics shape individuals' thoughts about future care over time and how psychological, social, and medical factors are interwoven in advance care planning. The findings advocate for a process-oriented perspective, portraying advance care planning as an ongoing dialog, encompassing the needs, concerns, and emotions of both people with amyotrophic lateral sclerosis and their family carers.

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

An online intervention to improve oncology health professional self-efficacy in communicating with carers: Hybrid effectiveness-implementation evaluation of the eTRIO program.

OBJECTIVES: Many oncology health professionals (HPs) report communicating with carers as complex; and receive limited carer-relevant training. We developed an online HP education program for supporting and managing carer involvement (eTRIO). We aimed to assess whether HPs' self-efficacy in carer communication, knowledge, and decision-making preferences improve following eTRIO. Satisfaction and implementation potential were assessed. METHODS: This type 1 hybrid effectiveness-implementation study used a pre-post single arm intervention design. HPs completed baseline measures, the eTRIO online module, and measures at 1- and 12-weeks post-intervention. Measures included: self-efficacy in carer communication (13-items), applied knowledge (7-items), preference for carer involvement in decisions (1-item). Fifteen of participants completed feedback interviews which underwent thematic analysis. User analytics were collected and analysed. RESULTS: Fifty-six HPs completed baseline measures, 42 completed post- and follow-up measures. At baseline mean self-efficacy score was 88. HPs showed a statistically significant increase in self-efficacy post-intervention (mean = 105.8, CI [12.99, 20.47]), maintained at 12-weeks (mean = 101.1, CI [8.00, 15.72]). There were no changes in knowledge or decision-making preferences. Program engagement and satisfaction were high, 86.7% participants rated eTRIO as very/extremely helpful. CONCLUSIONS AND PRACTICE IMPLICATIONS: eTRIO provided HPs with confidence to effectively engage with carers and manage complex situations such as family dominance. These gains are noteworthy, as conflict with families/carers contributes to HP burnout.

Dying at home: What is needed? Findings from a nationwide retrospective cross-sectional online survey of bereaved people in Germany.

OBJECTIVES: According to the "Last Year of Life in Cologne" study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to support families to enable people to die at home - if this is their preferred place of death. Our aim was to identify the factors that make it possible for people to die at home and to analyze factors of dying at home. METHODS: Germany-wide quantitative cross-sectional online survey of bereaved adult relatives. RESULTS: The needs of 320 relatives of patients who wished to die at home were explored. Of these, 198 patients died at home and 122 did not. In the last 3 months of life, caregivers needed support in managing out-of-hours care (p < 0.001), financing (p = 0.012), preparing and organizing home care (both p < 0.001), communicating with the patient and medical staff (p = 0.012 and p = 0.009, respectively), and pain management (p < 0.001). Relatives whose next of kin did not die at home had higher needs, suggesting that these factors are key to home care of the dying. SIGNIFICANCE OF RESULTS: The process of dying at home begins long before the actual dying phase. To minimize caregiver burden and improve symptom management, advanced home care plans are needed, with ongoing reassessment of family preferences and abilities.

Strategies for engaging older adults and informal caregivers in health policy development: A scoping review.

BACKGROUND: Care for older adults is high on the global policy agenda. Active involvement of older adults and their informal caregivers in policy-making can lead to cost-effective health and long-term care interventions. Yet, approaches for their involvement in health policy development have yet to be extensively explored. This review maps the literature on strategies for older adults (65+ years) and informal caregivers' involvement in health policy development. METHOD: As part of the European Union TRANS-SENIOR program, a scoping review was conducted using the Joanna Briggs Institute's methodology. Published and grey literature was searched, and eligible studies were screened. Data were extracted from included studies and analysed using the Multidimensional Framework for Patient and Family Engagement in Health and Healthcare. RESULTS: A total of 13 engagement strategies were identified from 11 publications meeting the inclusion criteria. They were categorized as "traditional", "deliberative" and "others", adopting the World Bank's categorization of engagement methods. Older adults and informal caregivers are often consulted to elicit opinions and identify priorities. However, their involvement in policy formulation, implementation and evaluation is unclear from the available literature. Findings indicate that older adults and their informal caregivers do not often have equal influence and shared leadership in policy-making. CONCLUSION: Although approaches for involving older adults and their informal caregivers' involvement were synthesized from literature, we found next to no information about their involvement in policy formulation, implementation and evaluation. Findings will guide future research in addressing identified gaps and guide policy-makers in identifying and incorporating engagement strategies to support evidence-informed policy-making processes that can improve health outcomes for older adults/informal caregivers.

Remote visits to address loneliness for people living with dementia in care homes: A descriptive qualitative study of visitors' perceptions.

AIMS: To assess visitors' perceptions of the benefits and challenges related to engaging in a remote visit intervention, which was designed to address the loneliness of people living with moderate to severe dementia in care homes. DESIGN: A qualitative descriptive study. METHODS: Twenty-four people living with dementia in care homes in Canada and their family and friends (i.e., remote visitors) took part in facilitated remote visits in 2021. Each person living with dementia received scheduled visits for 30-60 min per week for 6 weeks. Participants chose to complete one longer visit, or multiple shorter visits, per week. Twenty remote visitors participated in semi-structured interviews after six weeks to discuss their perspectives on the effectiveness, benefits and challenges of the program in relation to addressing experiences of loneliness of the person living with dementia. Conventional content analysis was used to analyze the data. RESULTS: We describe three themes and several sub-themes. Themes support the use of remote visits to enhance, rather than replace, in-person visits; the benefits of remote visits for the person living with dementia and their remote visitors; and the conditions that lead to a successful remote visit. CONCLUSION: Remote visitors reported that facilitated visits had positive effects for both visitors and people living with dementia with respect to loneliness, communication, relationships, and social connection. IMPLICATIONS FOR PATIENT CARE: Clinicians can consider the factors that contributed to positive experiences of remote visits. The factors include individualized, facilitated visits that were flexible, and the use of reliable technology in a supportive, distraction-free environment. IMPACT: Loneliness and social isolation are growing health concerns. When experienced by people living with dementia residing in long-term care homes, loneliness and social isolation can result in lower levels of quality of life and well-being, and higher levels of anxiety and responsive behaviours. Remote visitors perceived that facilitated remote visits have the potential to address loneliness and improve quality of life for people living with dementia and also offer social support to remote visitors. The findings can impact clinician practice by guiding the use of remote visits in care homes, and inform future intervention research to evaluate the effectiveness of remote visits for people living with dementia and their remote visitors. REPORTING METHOD: This manuscript adheres to the relevant EQUATOR guidelines (the Consolidated criteria for reporting qualitative research or COREQ). PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township.

This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation to dementia-specific services, psychoeducation on dementia as a disease and its behavioural manifestations, as well as practical skills to manage the disease process. Caregivers expressed the need for in-depth, accessible education to boost their confidence and resilience in handling the challenges of dementia caregiving. They also proposed community initiatives to raise awareness, promote knowledge, and facilitate early detection and diagnosis of dementia. Additional needs included informational and educational workshops, resources like transportation services and helplines, day care facilities, media campaigns, and collaboration with the government for funding and policy change. New caregivers were advised to seek comprehensive education, support, and services while preserving the dignity of their family members with dementia. Remarkably, the identified needs and community initiatives aligned with the priority areas outlined by ADI for a National Dementia Plan, which South Africa currently lacks. The study highlights the importance of developing a National Dementia Plan in South Africa through collaboration among stakeholders, including communities, policy-makers, and multidisciplinary healthcare teams, while ensuring that individuals and families affected by dementia have a voice.

Randomised controlled feasibility study protocol of the Carers-ID online intervention to support the mental health of family carers of people with intellectual disabilities.

BACKGROUND: Family carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities. METHODS: Family carers (n = 120) will be randomised to receive the intervention (n = 60) or assigned to a wait-list control (n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick-Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants (n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. DISCUSSION: The Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention's effectiveness is warranted. TRIAL REGISTRATION: ClinicalTrials.gov : NCT05737823.