References
A qualitative study of research participation for parents from minority ethnic groups in the UK
Abstract
Background/Aims
Under-representation of pregnant women, their partners and parents from minority ethnic backgrounds has been reported in research involving the perinatal period. This study's aim was to explore the experiences of parents from minority ethnic groups who participated in research during the perinatal period, focusing on barriers and facilitators to participation.
Methods
In-depth qualitative interviews were conducted via Microsoft Teams by all three researchers with a purposive sample of 16 parents. Data were analysed using thematic analysis.
Results
Seven overarching themes were identified: motivating factors; unique contributions; language, understanding and access; cultural values, beliefs and practices; lack of time and other commitments; facilitators for participation; and experience of the current study.
Conclusions
Understanding motivation for participation is essential to developing recruitment strategies that promote involvement of parents from minority ethnic backgrounds. A clear understanding of research goals and perceived benefits, and maximising access to studies, is likely to result in improved recruitment.
Implications for practice
Ways to encourage research participation from parents in minority ethnic groups include using a range of advertising techniques and venues, offering a choice of time and place for activities and alternative methods of data collection, and disseminating information on available studies in early pregnancy.
Involving patients and the public in health research can help ensure the relevance and suitability of research and improve the quality of the research outcomes (Staniszewska et al, 2011). While ensuring that public contributors are embedded in a meaningful way throughout the research cycle is an expectation for UK health and social care research, it can be challenging to involve patients and the public in ways that are meaningful and have impact. In the UK, ethnic minority groups are especially under-represented in medical research (Smart and Harrison, 2017).
A survey conducted by the National Institute for Health Research (2019) on public involvement suggested that young people and minority ethnic communities remained under-represented in public involvement; only 16% of public contributors surveyed were under 50 years old, while Asian ethnic groups represented only 3% of respondents and Black ethnic groups only 2%. For maternity and postnatal research, this disparity was even more concerning. UK reports on maternal and perinatal mortality suggest that women from minority ethnic backgrounds are significantly more likely to lose their babies or die during or after their pregnancy compared to their White British counterparts (Draper et al, 2019; Knight et al, 2020). Therefore, increased involvement in research from diverse communities needs to be part of addressing this issue.
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