Health and social care experience and research perception of different ethnic minority populations in the East Midlands, United Kingdom (REPRESENT study).

INTRODUCTION: Ethnic minority populations experience significant health and social care disparities; despite experiencing a greater burden of diseases, these groups are underrepresented in health and social care research. Consequently, related research can be less applicable to these population groups. The REPRESENT study aims to explore the health and social care experiences of ethnic minorities and other minoritised populations, their research interests and appropriate research practices. METHODS: Focus groups and semistructured interviews were conducted between May and September 2022 with members of a number of ethnic minority communities in England. Data were audio recorded, transcribed and thematically coded using NVivo 12. Rigour was determined through extensive sampling, iterative data collection and analysis. FINDINGS: Fifty-two ethnic minority members were engaged in group interviews and one-to-one interviews. Participants included representatives of the following groups: African Caribbean, Eastern European, Gypsy Travellers, Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual+, Refugee/Asylum Seekers, Somali and South Asian communities. Interviews were also conducted with ethnic minority healthcare providers and researchers. Three overarching categories were identified: health information, medical service experiences, health and social care concerns and health research. Health and social care services challenges were mostly attributed to discrimination, delayed services, poor cultural relevance and language and cultural barriers. The most influential information sources were local community organisations and word-of-mouth. The main health and social care concerns were chronic long-term health conditions, mental health, maternal health and child development. Recommendations for research involved understanding the motivations for participation, improving communication and empowering communities. Top research priorities were long-term health conditions, health promotion and education, early care interventions and understanding community needs. INTERPRETATION: Discrimination and bias in health and social care provision have severe implications for worsening ethnic health inequalities. Healthcare commissioning authorities and policymakers can leverage the preference of ethnic minority groups for pharmacy services and community organisations to improve access to care. Improving research interest and engagement requires understanding individual community needs, community sensitivity, research relevance and cultural appropriateness. PATIENT OR PUBLIC CONTRIBUTION: Members of ethnic minority Patient and Public Involvement and Engagement group and Community Advisory Board supported the REPRESENT study design, conceptualisation and report development.

Perinatal health outcomes of women from Gypsy, Roma and Traveller communities: A systematic review.

BACKGROUND: GRT communities are disadvantaged minority groups in Europe and experience some of the poorest health outcomes, including maternal and child health. This systematic review aimed to assess the maternal, perinatal and infant health outcomes of women from GRT communities and the factors associated with the reported outcomes. METHODS: Database searches were conducted from inception to June 2023 in 4 bibliographic databases supplemented with an additional Google Scholar search. Studies with quantitative data on maternal outcomes published in English were considered. A narrative synthesis was performed, and data were presented in text, figures and tables. FINDINGS: Forty-five studies from 13 European countries were included. Outcome factors related to mothers showing low healthcare engagement, high fertility rates and shorter gestation periods among GRT women. Child wantedness was also noted to influence pregnancy completeness, which included abortion and miscarriage. More negative infant outcomes were seen in GRT infants than non-GRT infants; this included higher preterm births, lower birth weight, higher rates of intrauterine growth restriction and infant mortality. Risk factors of poorer maternal outcomes were early reproduction, education, smoking, alcohol consumption, deprivation, poor nutrition and perinatal care. CONCLUSION: This review provides evidence that GRT women and children experience more negative outcomes than general populations. It also highlights the gaps in ethnicity and health inequalities more broadly. The significant importance of this research is the need for increased focus on reducing health inequalities, especially among the GRT community.

The clinical and cost effectiveness of internet-delivered self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS): Study protocol for a randomised controlled trial with ethnically diverse family carers.

BACKGROUND: Following the successful completion of feasibility and acceptability studies of internet-delivered self-help Acceptance and Commitment Therapy for family carers of people with dementia (iACT4CARERS), a full-scale randomised controlled trial (RCT) evaluating its clinical and cost effectiveness will be conducted. This paper describes the design and protocol for a multi-site, parallel, single-blind, 2-arm RCT evaluating the clinical and cost effectiveness of iACT4CARERS plus treatment-as-usual (TAU) in comparison to TAU alone for reducing anxiety in family carers of people with dementia. METHODS: 496 family carers aged ≥18 years, who are caring for a person with dementia, will be recruited from national healthcare services, general practices and community groups in England. Participants randomised to the intervention arm will receive iACT4CARERS over 12 weeks. Participants will complete outcome measures at baseline (0 weeks) and at 12-weeks and 24-weeks post-randomisation. The primary outcome and timepoint will be anxiety at 12 weeks. Secondary outcomes will include psychological flexibility, depression, and cost-effectiveness (cost per quality adjusted life years). Primary analyses will be by intention-to-treat and data will be analysed using linear mixed models. Fidelity and quality of implementation will be assessed and contextual factors associated with variation in outcomes identified in a process evaluation. CONCLUSION: If iACT4CARERS is found to be effective and affordable, this self-help intervention, including minimal contact with minimally trained therapists, has the potential to be rolled out widely within healthcare services in the UK, reducing inequality in access to psychological services among this population. CLINICAL TRIALS REGISTRATION: ISRCTN registry identifier ISRCTN45995725.

Incorporation of patient and public involvement in statistical methodology research: development of an animation.

BACKGROUND: Patient and Public Involvement and Engagement (PPIE) is important to all aspects of health research. However, there are few examples of successful PPIE in statistical methodology research. One of the reasons for this relates to challenges in the identification of individuals interested in statistical methodology research projects, and ambiguities over the importance of PPIE to these projects. METHODS: This project was conducted between August 2022 and August 2023. The aim is to report the process of the development of an accessible animation to describe what statistical methodology is and the importance of PPIE in statistical methodology research projects. For this, we combined storyboarding and scriptwriting with feedback from PPIE members and researchers. RESULTS: After three stages that incorporated feedback from the relevant stakeholders, we produced a final animation about PPIE in statistical methodology. The resulting animation used minimal text, simple animation techniques and was of short duration (< 3 min) to optimise the communication of the key messages clearly and effectively. CONCLUSIONS: The resulting animation provides a starting point for members of the public to learn about PPIE in statistical methodology research and for methodologists who wish to conduct PPIE. We recommend further work to explore ways in which members of the public can be more meaningfully involved in methodology research.

Patient and public involvement and engagement (PPIE) is when members of the public are directly involved in carrying out research projects. This is important because we as researchers want to make sure we are focusing on what matters most to patients, so that the research has as large an impact as possible. PPIE has typically been used in more applied research projects, such as clinical trials, but is equally as important in statistical methodology research, where we focus on making sure the statistical tools that we use in the applied projects are as good as possible. The aim of this project was to create a short animation that helps to explain the importance of PPIE in statistical methodology research projects. Researchers sometimes incorrectly assume that PPIE is less important in these projects as this type of research has a less obvious benefit to patients. The animation helps to further explain these concepts. It describes what statistical methodology research is and why involving members of the public is still important. This paper explains the process of developing the animation, including receiving feedback from members of the public to make sure the animation is accessible to as many people as possible. The result is a short, 3-min animation that is free to view on the NIHR website. This can be used by other researchers to help them when recruiting members of the public to their research projects.

Health Communication and Inequalities in Primary Care Access during the COVID-19 Pandemic among Ethnic Minorities in the United Kingdom: Lived Experiences and Recommendations.

Health Communication is critical in the context of public health and this was highlighted during the COVID-19 pandemic. Ethnic minority groups were significantly impacted during the pandemic; however, communication and information available to them were reported to be insufficient. This study explored the health information communication amongst ethnic communities in relation to their experiences with primary health care services during the COVID-19 pandemic. The research used qualitative methodology using focus groups and semi-structured interviews with community members and leaders from three ethnic minority communities (African-Caribbean, Somali and South Asian) in Leicester, United Kingdom. The interviews were audio recorded, transcribed, and open-coded. Rigour was determined through methodological coherence, appropriate and sufficient sampling, and iterative data collection and analysis. Six focus groups and interviews were conducted with 42 participants. Four overarching themes were identified related to health communication, experiences, services and community recommendations to improve primary care communication. To address primary care inequalities effectively and improve future health communication strategies, experiences from the pandemic should be reflected upon, and positive initiatives infused into the healthcare strategies, especially for ethnic minority communities.