Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study

Abstract

Patient and public involvement is imperative to ensure relevance of research. There is a growing literature on the theoretical underpinning on patient and public involvement including level and processes of involvement. The aim of this paper is to describe a person-centred and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study; and the influence of the approach on the study’s research processes and outcomes. Patient and public involvement members were considered experts by experience and involved with study conception, design, conduct and dissemination. The perspective of the experts by experience is also presented in this article. The level and nature of involvement was influenced by each individual’s needs and desires which changed over the course of the study. The approach had a significant impact on study outcomes as evidenced by successful recruitment and engagement at a national level, but was not without challenges with greater flexibility required and fuller consideration of financial and time costs required. Benefits of the approach included strong engagement, improved outcomes (successful recruitment of seldom heard groups) and meaningful relationships between researchers and experts by experience. A person-centred and culturally sensitive approach is required with patient and public involvement to ensure involvement is not detrimental to those involved, is meaningful and enjoyable and has a positive impact on the research.

Partnering with frail or seriously ill patients in research: a systematic review

“…Positive Impacts Negative Impacts 17 (57%) Sensitizes researchers to experiential knowledge not gained at the bench or the bedside. Recognizing human experience [7, 45, 47, 50-52, 54, 55, 57, 59, 62, 63, 66, 67, 69, 70, 72] 7 (23%) Challenges negative/ambiguous beliefs and perceptions of utility of patient partnerships [52,59,62,63,65,71,72] 4 (13%) Increase interpersonal skills and highlighted significance of partnerships in research [51,59,62,63] 15(50%) Investment and expenditure of time and resources [7, 24, 45-47, 54, 56, 59, 60, 62-64, 69-71] 2 (7%) Complexity/intensity of the process may serve as an impediment to meeting project timeline [7,64] Research Level -Perceived Impacts…”

“…Positive Impacts Negative Impacts 13 (43%) Improves/informs research design, execution, and translation [7, 51, 54-56, 59, 62-64, 69-72] 13 (43%) Research tools (e.g., consent and data collection form), processes (e.g., recruitment and retention), and methods are more relevant [7, 45-47, 51, 56, 57, 59, 62-64, 70, 71] 11 (37%) Outcomes are identified as being more relevant to patients [46,50,51,54,63,64,66,[69][70][71][72] 11 (33%) Patients' input offers directions for researchers and research funding agenciesgeneration of new ideas [24,45,48,49,51,52,57,61,65,67,68] 9 (30%) Research outputs are more accessible to the public [24,45,47,51,52,56,57,64,69] 6 (20%) Research priorities ranked by patients reflect applicability to the lived experience of illness, frailty, and/or treatment [24,48,49,52,58,61] 2 (7%) Democratization of allocation of research resources [49,52] 1 (3%) Increased transparency and accountability for publicly-funded research [55] wellbeing, but it should not serve to prevent initial or ongoing engagement…”

“…Evaluating the impact of partnering with frail and/or seriously ill patients is essential; limited evidence suggests that patients experienced several positive impacts, particularly when more intensive levels of engagement occurred. The potential emotional benefits described by patient partners (e.g., a renewed sense of purpose whilst coping with a disease over which they have little control, and/or the emotional support from peers on the research team) may in fact serve as a protective factor against emotional distress and vulnerability, and may also serve to quell researchers' hesitation in partnering with them [7,45,47,51,64].…”

“…Studies originated from: United Kingdom (n = 18 studies), Canada (n = 5), Denmark (n = 3), United States (n = 2), the Netherlands (n = 1), and Malawi (n = 1). The number of patients in the studies ranged from one [64] to 168 [68] with a median of 16 patients. There were 11 (37%) studies where patients were engaged as a group with caregivers and/or other stakeholders (e.g., ex-patients, survivors, patient representatives/ advocates, or members of the public) [7,24,46,52,53,[57][58][59][60][61]72].…”

Including ‘seldom heard’ views in research: opportunities, challenges and recommendations from focus groups with British South Asian people with type 2 diabetes

“…Although patient and public involvement (PPI) in research has developed considerably over the last 20 years, little is known about Black, Asian and Minority Ethnic (BAME) involvement or about the factors that influence this [15,16]. With the growing requirement of patient involvement in research and the inclusion of diverse populations, [17] practical guidance on how to include, engage and conduct research with UK South Asian populations is essential if services are to be useful, relevant, ethical and impactful [18].…”