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.

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.

'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.

Caregiver experiences of hospice dementia care: a systematic review and meta-ethnography.

OBJECTIVES: Hospices are regarded as gold standard providers of end-of-life care. The term hospice, however, is broadly used, and can describe a type of care offered in a variety of health care services (e.g. nursing homes). It thus becomes complex for families to decide between services. We aimed to review the evidence around the experience of family carers of people with dementia accessing in-patient hospice settings for end-of-life care. METHOD: We registered the review protocol on PROSPERO. We used PerSPE(C)TiF to systematically organise our search strategy. The evidence was reviewed across six databases: PubMed, EMBASE, PsycINFO, ASSIA, ISI Web, and CINAHL. We used meta-ethnography as per the eMERGe guidance for data interpretation. RESULTS: Four studies were included. Two third-order constructs were generated through meta-ethnography: expectations of care and barriers to quality of care. We found that carers had expectations of care, and these could change over time. If discussion was not held with hospice staff early on, the carers could experience reduced care quality due to unmatched expectations. Unmatched expectations acted as barriers to care and these were found in terms of carers not feeling adequately supported, and/or having the person discharged from hospice, which would entail increased care responsibility for carers. CONCLUSION: In view of an increase in new dementia cases over time and with hospice services being under pressure, integrating palliative care services within community-based models of care is key to reducing the risk of having inadequate and under resourced services for people with dementia.

Caregiver experience of the Norwegian manual for individual cognitive stimulation therapy (iCST): a qualitative study.

OBJECTIVES: This research project investigated how family carers in Norway experienced delivering iCST, their need for supervision and the potential for co-occupation. METHODS: Reflexive thematic analysis was used to understand the experiences of 11 carers using iCST for 8 wk. Three semi-structured interviews were conducted with each participant, including a pre-assessment of caregiver burden and a rating of dementia severity. RESULTS: Most carers described the manual as self-instructive. Some felt overwhelmed when starting iCST. It was important to plan and individualise the sessions to the specific needs of the person with dementia. After delivering iCST the carers described new insights into the person with dementia's resources and challenges. Obstacles to doing iCST were related to the context, the manual or to specific challenges linked to the person with dementia or to the carer. Most participants described positive experiences, in which shared interaction, engagement and mastery were common. CONCLUSION: When the carer understands the iCST programme as a tool and adapts it to the specific needs of the person with dementia then co-occupation and positive interactions happen. However, some carers would benefit from supervision and the iCST programme did not address all persons with dementia.

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.

Coping and anxiety symptoms in family carers of dependent older people: Mediation and moderation effects of subjective caregiver burden.

INTRODUCTION: Coping responses influence anxiety symptoms experienced by informal carers. However, only a few studies have investigated the longitudinal association between coping responses and anxiety symptoms in family carers. We also currently have limited knowledge on the mediating or moderating influence of subjective caregiver burden on this relationship over time. The aim of the present study was to investigate the longitudinal relationship between coping and anxiety symptoms in family carers of dependent older people, and examine the mediating or moderating role of subjective caregiver burden over time. DESIGN: Prospective longitudinal study. METHODS: We recruited and enrolled participants from a probability sample of 132 family carers of older dependent relatives. We measured coping strategies, anxiety symptoms, subjective caregiver burden, and several covariates (sex and intensity of care) at baseline and at 1-year follow-up. We used generalized estimating equations with multiple imputations to examine associations over time. RESULTS: Considering both direct and indirect effects through subjective burden, anxiety symptoms were positively associated with proactive coping (B = 0.13), planning (B = 0.15), self-distraction (B = 0.24), denial (B = 1.15), venting (B = 0.94) and self-blame (B = 0.90), and negatively associated with positive reframing (B = -0.83) and acceptance (B = -0.75). Subjective caregiver burden moderated the relationship between anxiety symptoms and planning, and the use of denial as a form of coping. CONCLUSIONS: Our results show that subjective caregiver burden is an important moderator and mediator of the longitudinal association between coping responses and anxiety symptoms in carers. CLINICAL RELEVANCE: Proactive coping and planning when subjective burden is low, self-distraction, denial, venting, and self-blame significantly increase levels of anxiety and caregiver burden in carers over time. Acceptance and positive reframing however as coping responses are associated with lower levels of anxiety and caregiver burden long-term. Our findings highlight the need for a multi-dimensional approach in future caregiving interventions.

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.

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.

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.

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.

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.

Tailoring STrAtegies for RelaTives for Black and South Asian dementia family carers in the United Kingdom: A mixed methods study.

OBJECTIVES: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost-effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia. METHODS: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies. RESULTS: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post-intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention. CONCLUSIONS: Culturally adapted START was acceptable and feasible in South Asian and Black UK-based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity.

Support from healthcare professionals in empowering family carers to discuss advance care planning: A population-based survey.

BACKGROUND: Family carers have a prominent role in end-of-life care for seriously ill persons. However, most of the advance care planning literature is focused on the role of healthcare professionals. AIMS: To investigate (1) what proportion of family carers discussed advance care planning with their relative and associated socio-demographic and clinical characteristics (2) what proportion received support from healthcare professionals for these conversations, (3) what type of support they received and (4) to what extent the type of support received was considered sufficient. DESIGN/PARTICIPANTS: Population-based cross-sectional survey in Belgium of bereaved family carers of persons with a serious chronic illness (N = 3000) who died 2-6 months before the sample was drawn, identified through three sickness funds. The survey explored support from healthcare professionals for family carers during the last 3 months of the patient's life. RESULTS: Response rate was 55%. The proportion of family carers that engaged in an advance care planning conversation with their relative was 46.9%. Of these family carers, 78.1% received support from a healthcare professional, mostly by doing the advance care planning conversation together (53.8%). Of family carers receiving support from a healthcare professional, 57.4% deemed the support sufficient. CONCLUSION: Many family carers engage in advance care planning conversations with their dying relative. Healthcare professionals often support them by performing the advance care planning conversations together. More insight into how family carers can be supported to conduct these advance care planning conversations, both with and without involvement of healthcare professionals, is necessary.

A scoping review of intensive longitudinal methods in informal caregivers of people with dementia.

BACKGROUND: The daily life of informal caregivers assisting individuals with dementia widely varies throughout the day and week. As an answer, an increasing number of researchers have used intensive longitudinal methods (ILMs) such as diary studies, experience sampling methods, or ecological momentary assessment. OBJECTIVES AND METHODS: The present scoping review aims at synthesizing the use of ILMs in informal dementia caregivers to clarify what is currently done and how, as well as what remains unaddressed. RESULTS: The screening process identified 48 studies from 22 different datasets. Synthesis of these studies showed the diversity of devices and uses of ILMs in informal care, including the exploration of associations between variables or accompanying an intervention. ILMs showed the important variability of caregiving phenomena, as well as the important association of momentary stress and well-being. Gaps were nevertheless identified, such as transparency in the construction of the tool or the absence of focus on emotions and dyads. CONCLUSIONS: For now, this field of research remains in its infancy and does not seem to have reached its full potential as it has in other fields. Nevertheless, it appears that ILMs are promising tools for informal dementia caregivers as they contribute to understanding the complexity of their daily life, with changing resources and challenges. Future directions include focusing more on (emotion) regulation, temporal lags, and the use of ILMs in interventional designs. TRIAL REGISTRATION: The present review was registered on OSF (osf.io/b2qr4).

Experiences of UK and Irish family carers of people with profound and multiple intellectual disabilities during the COVID-19 pandemic.

BACKGROUND: People with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to explore the experiences of family carers of people with PMID during the COVID-19 pandemic and understand what the longer-term impact might be on their lives. METHODS: Focus group interviews (n = 32) were conducted with family carers (n = 126) from the four countries of the UK and the Republic of Ireland. Participants were asked questions relating to their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. All focus groups were conducted using the online platform, Zoom. These were audio recorded, transcribed verbatim and analysed employing inductive thematic analysis. FINDINGS: Three main themes were generated from the data including (1.0) COVID-19 as a double-edged sword (2.0), The struggle for support (3.0), Constant nature of caring. These included 11 subthemes. (1.1) 'COVID-19 as a catalyst for change', (1.2) 'Challenges during COVID-19: dealing with change', (1.3) 'Challenges during COVID-19: fear of COVID-19', (1.4); 'The online environment: the new normal' (2.1) 'Invisibility of male carers', (2.2) 'Carers supporting carers', (2.3) 'The only service you get is lip service: non-existent services', (2.4); 'Knowing your rights' (3.1) 'Emotional response to the caring role: Feeling devalued', (3.2) 'Emotional response to the caring role: Desperation of caring', (3.3) 'Multiple demands of the caring role.' CONCLUSIONS: The COVID-19 pandemic presented immense challenges to family carers of people with PMID but also provided some opportunities. Families had already struggled to receive many of the supports and services to which they were entitled to only to have these removed at the onset of the pandemic. The experiences of male carers have been largely absent from the literature with this research showing they want to be included in decision making and require tailored support services. Service providers should see the end of the COVID-19 pandemic as providing opportunity to re-examine current provision and design services with family carers. As the direct threat from COVID-19 diminishes and the experiences of those who lived through this period come to the fore, there is a need to re-examine current models and provision of support to family carers to better meet their needs.

Telephone-based aftercare groups for family carers of people with dementia - results of a mixed-methods process evaluation of a randomized controlled trial.

BACKGROUND: Caring for a relative with dementia can be demanding and time-consuming. It is not uncommon for them to be overburdened and overworked, which can lead to symptoms of depression or anxiety disorders in 2/3 of cases. One possibility for treating family carers who have these issues is special medical rehabilitation (rehab). However, studies have shown that while such rehab is effective, it is not sustainable. To increase the sustainability of rehab for this target group, structured telephone-based aftercare groups were implemented in the present study. A process evaluation was conducted focusing on the acceptability of the aftercare programme and its perceived benefits by the participating family carers and group moderators. METHODS: The process evaluation was embedded in a longitudinal randomized controlled trial and followed a mixed methods approach. Quantitative process data were collected using protocols and structured brief evaluations regarding the telephone-based aftercare groups. To assess the acceptability of the aftercare groups as well as their subjective evaluation by the participants, qualitative process data were collected through two longitudinal telephone-based interviews with a subsample of family carers as well as a focus group interview with the group moderators. RESULTS: Telephone-based aftercare groups provide acceptable and supportive experiences, and they are shown to be practicable. The content structure and the procedure of the group sessions could be easily implemented in everyday life after inpatient rehab. The topics addressed with each patient were met with a consistently positive response. Learning from the other group members and sharing a bond based on the experience of caring for a relative with dementia were evaluated as positive outcomes in the group. The universality of suffering as a central effective factor of group psychotherapy also played a decisive role in this telephone-based support group format for a shared bonding and strengthening experience in the groups and thus for their effectiveness. CONCLUSION: Telephone-based aftercare groups for family carers of people with dementia are a useful and acceptable tool in the context of rehab aftercare. This location-independent aftercare programme could be adapted for other indications, focuses or topics in everyday care. TRIAL REGISTRATION: German Clinical Trials Register: DRKS00013736, 14/05/2018.

Tackling the escalating burden of care in Uganda: a qualitative exploration of the challenges experienced by family carers of patients with chronic non-communicable diseases.

BACKGROUND: Family carers face challenges that could significantly affect their health and the health of those they care for. However, these challenges are not well documented in low-income settings, including Uganda. We explored the challenges of caring for someone with chronic non-communicable disease (NCD) in Uganda. METHODS: We conducted a qualitative exploratory study at Hospice Africa, Uganda (an urban setting) and Hampton Health Center (a rural setting) in Uganda in February and March 2021. Family carers (n = 44) were recruited using snowball and purposive sampling techniques. Data were collected using focus group discussions and in-depth interviews, gathering family carer perspectives of (a) their caring role (b) their support needs, and (c) attitudes of the wider community. In total, four focus group discussions and 10 individual interviews were completed. RESULTS: The average age of carers was 46 years old. The majority of family care was provided by female relatives, who also experienced intersectional disadvantages relating to economic opportunities and employment. Family carers carried a huge burden of care, experiencing significant challenges that affected their physical health, and material and emotional well-being. These challenges also affected the quality of care of the patients for whom they cared. Carers struggled to provide for the basic needs of the patient including the provision of medication and transport to health facilities. Carers received no formal training and limited support to carry out the caring role. They reported that they had little understanding of the patient's illness, or how best to provide care. CONCLUSIONS: As NCDs continue to rise globally, the role of family caregivers is becoming more prominent. The need to support carers is an urgent concern. Family carer needs should be prioritised in policy and resource allocation. The need for a carer's toolkit of resources, and the enhancement of community support, have been identified.

The impact of caring for family members with mental illnesses on the caregiver: a scoping review.

A large number of multidisciplinary, qualitative and quantitative research suggests that providing care for family members with mental health illnesses can have both positive and negative effects on the carers' wellbeing. However, to date a comprehensive overview and synthesis of literature that compares and contrasts positive and negative effects of family-caregiving on the carer is missing. To address this gap, this scoping review examines the effects of family-caregiving on carers' wellbeing. A Boolean search generated a total of 92 relevant articles that were included in the analysis. The results suggest that, to understand the effects of family-caregiving on the carer's mental and physical wellbeing, it is necessary to take a combination of situational and sociodemographic characteristics into consideration. Elderly, female, spousal-carers and primary-carers may be a group that is at risk of suffering from a lack of positive mental and physical wellbeing as a result of caring. However, the negative effects of caregiving can be balanced by extraversion, social support and religious or spiritual beliefs. Therefore, future interventions that aim to promote family caregivers' wellbeing may need to take personality, particular circumstances as well as cultural and personal beliefs into consideration.

Exploring the Efficacy of an Online Training Programme to Introduce Mental Health Recovery to Carers.

Family carers often support people with mental ill-health, however, there is a dearth of research on the importance of recovery to mental health carers. This article describes the delivery and qualitative evaluation of an online training programme on recovery to a group of eleven carers. The participants considered their understanding of the meaning of recovery, differentiating between its personal and clinical nature. They highlighted the importance of carer involvement in the service users' professional support, alongside the need for carers to participate more widely in service development. Finally, the participants found the training useful in enabling them to recognise their own needs in a caring journey, particularly valuing its delivery by a service user and carer trainer. This study is limited by the small number of participants in this programme; however, this series of connected studies suggests its potential to be rolled out more widely, possibly embedded in Recovery Colleges.