The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Davies, Nathan; Iliffe, Steve; Hopwood, Jenny; Walker, Nina; Ross, Jamie; Rait, Greta; Walters, Kate

doi:10.1080/13607863.2019.1642299

Cited by 16 publications

(17 citation statements)

References 45 publications

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“…However, those without the capacity to access digital services may end up further disadvantaged. Previous literature 28 29 has highlighted the importance of enabling older adults with dementia and carers to use technology to promote social interaction, and the unique circumstances of the COVID-19 pandemic may have hastened the need for widespread digital inclusion—both for social needs and wider functions, such as maintaining contact with those in hospitals and care homes, attending telehealth appointments and ordering groceries.…”

Section: Discussionmentioning

confidence: 99%

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

et al. 2021

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IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.

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Section: Discussionmentioning

confidence: 99%

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

et al. 2021

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“…However, there are few intervention studies which have focussed on supporting caregivers towards the end of life. This prototype not only helps to fill this gap of internet-based interventions, but also addresses concerns raised by caregivers about the lack of support reported in previous studies, including the qualitative data of this study [23,24,[40][41][42].…”

Section: Discussionmentioning

confidence: 86%

“…Interviews with participants in the UK was used to inform the development of the prototype [23,24], therefore reflecting the needs UK caregivers and services available to support them. However, many challenges within service and the needs of caregivers at the end of life are shared worldwide [13,44], and the prototype could be applicable internationally, with some cultural translation.…”

Section: Discussionmentioning

confidence: 99%

“…Following analysis of phase 1 and 2 data (reported elsewhere [23,24]) and tabulation, the research development group met to discuss the development of a prototype, using a modified nominal group process [28,[32][33][34]; a first step to co-production. Nominal group processes are structured meetings which have a specific problem to solve, facilitate group thinking and decision making.…”

Section: Stage 2identifying Intervention Targets and Componentsmentioning

confidence: 99%

“…These figures are likely to rise as younger age groups already familiar with technology age. Qualitative data suggests caregivers have positive views of receiving support online via a website, and help support them with when caring for someone with dementia approaching the end of life [23,24].…”

Section: Introductionmentioning

confidence: 99%

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Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

et al. 2019

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Background: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Methods: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: interviews with caregivers testing the prototype website. Results: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-today caring, care planning, and communication. Conclusions: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.

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Global Systems: Palliative Care and Hospices at the End of Life

Paal

2022

Challenges to the Global Issue of End of Life Care

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The key aspects of online support that older family carers of people with dementia want at the end of life: A qualitative study

Cited by 16 publications

References 45 publications

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups

Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life

Global Systems: Palliative Care and Hospices at the End of Life

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