Research ethics and collaborative research in health and social care: analysis of UK research ethics policies, scoping review of the literature, and focus group study

Current research ethics frameworks were developed on the footprint of biomedical, experimental research and present several pitfalls when applied to non-experimental social sciences. This work explores how the normative principles underpinning policy and regulatory frameworks of research ethics and the related operational processes work in practice in the context of collaborative health and social care research. The work was organised in three phases. First, UK research ethics policy documents were analysed thematically, with themes further organised under the categories of ‘Principles’ and ‘Processes’. Next, we conducted a scoping review of articles about research ethics in the context of collaborative health and social care research, published in English between 2010 and 2022. We then held an exploratory focus group with ten academic researchers with relevant experience to gather their views on how the research ethics system works in practice in England (UK). The thematic framework developed in the first phase supported the analysis of the articles included in the scoping review and of focus group data. The analysis of policy documents identified twelve themes. All were associated to both a principle and a related operational process. The scoping review identified 31 articles. Across these, some themes were barely acknowledged (e.g., Compliance with legislation). Other themes were extensively covered (e.g., The working of Research Ethics Committees), often to discuss issues and limitations in how, in practice, the research ethics system and its processes deal with collaborative research and to suggest options for improvement. Focus group data were largely consistent with the findings of the scoping review. This work provides evidence of the poor alignment between how the research ethics system is normatively expected to work and how it works in practice and offers options that could make research ethics more fit for purpose when addressing collaborative research in health and social care

Cognitive approaches to enabling people to live well with dementia

Ye

Choice and wellbeing in informal care

‘Choice’ is increasingly pursued as a goal of social policy. However the degree to which choice is exercised when entering an informal care role is open to debate. In this study of UK carers, we examined whether caring was perceived as a free choice, and what the consequence of choice was for carers’ wellbeing. Our data were derived from responses to a postal survey conducted in a large British city. One thousand one hundred respondents reported providing care to a close person and of these, 72% answered a further set of questions about caregiving and about their own well-being. We found that informal care was generally perceived to be a free choice, albeit in most cases, a choice that was constrained by duty, financial or social resources. Having a sense of free choice in entering care was strongly and positively associated with wellbeing. The positive impact on wellbeing persisted across different measures of wellbeing and when controlling for socio-demographic characteristics and the nature of the caring role. Further work is needed to better understand the modifiable aspects of choice for carers. Nonetheless, this study suggests that enabling individuals to have more choice in their caring roles may improve their lives

Relationship continuity and emotional well-being in spouses of people with dementia

YesObjectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia

Does size matter? The benefits and challenges of voluntary sector partnerships in dementia service provision for South Asian communities in England

YesIn response to the need for improved access to dementia services for minority ethnic communities, the Alzheimer’s Society piloted, in 2014, the Information Programme for South Asian Families (IPSAF), an adapted version of its existing course for carers. It delivered this in partnership with local black and minority ethnic community and faith organisations, a new approach for the Alzheimer’s Society. In most cases, the partnerships formed were strong and effective, and have given rise to ongoing plans for joint working that bring benefits to both the local organisations and the Alzheimer’s Society. However, the current realities of UK voluntary and community sector dynamics raise questions of ownership and issues around how to establish genuine partnerships. In this article, we reflect on what the IPSAF experience indicates about the potential for equitable partnerships between small and large organisations, and draw out lessons for building effective, mutually beneficial relationships

Consensus Views on Advance Care Planning for Dementia: A Delphi Study

yesThe uptake of advance care planning (ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three-round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty-two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of ‘certain possibilities’. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not

Dementia detectives: Busting the myths

yesDescribes the one-hour dementia awareness programme developed for secondary schools

The need to “carer proof” healthcare decisions

yesPopulation ageing and fiscal austerity are set to increase the reliance on family carers, who already provide much of the support for people with long term health conditions. Although most carers are willing, providing care can be hugely stressful, affecting mental and physical health1 and resulting in social isolation and financial hardship.2 When under strain, carers are less likely to be effective, increasing the risk that the care recipient is admitted to hospital or a care home.3 Health systems could reduce strain on family carers by routinely considering carers’ needs alongside patients’ needs in everyday healthcare decisions—a concept we term “carer proofing”.non