The Experiences of Black Families amidst a Double Pandemic
I am a research worker on the BeFINE research study, and I feel very privileged to be part of a team that seeks to empower and hold space for underrepresented voices. Our study aims to understand and provide new ways regarding how best to support the well-being of Black families in the UK. The originality of this research excites us as it consists of active steps that seek to amplify opinions and experiences that are often overlooked. From reading this short piece, we hope readers will gauge how important this area of research is and share our excitement in supporting communities that have for so long struggled with access due to major barriers and social inequalities.
The devastating impact of the COVID-19 pandemic on Black minority ethnic communities has been widely acknowledged and has led to a greater spotlight on groups exposed to pre-existing health and social inequalities. There is a growing literature documenting the adverse impact of COVID-19 on families, and the health and wellbeing of children and young people specifically from racial minority groups. Throughout the COVID-19 pandemic, Black minority communities have and are experiencing higher levels of mortality, hospitalisation, food insecurity, grief, and loss. Furthermore, declines in mental health have also been reported by Black ethnic minorities in a UK report as a consequence of financial fears and issues with housing and employment ignited by the pandemic.
However, in the context of data indicating that non-White racial minority groups constitute 14% of the population across England and Wales, very little is known about the impact of the pandemic on families from racial minority backgrounds.
As a means to improve health research, there has been an ongoing call for greater involvement of patients and the public within research from prioritising ideas for investigation to sharing and implementing findings. This form of involvement offers both a community perspective and lived experience that will allow health research to better meet the needs of diverse populations.
However, despite an increase in patient and public involvement, participation from minority communities, including Black ethnic groups remains limited. The absent narratives from these communities and the lack of opportunities to offer input into health research has major consequences on healthcare and outcomes.
The Be FINE project
Despite growing awareness and documentation of the health and social disparities faced by Black communities in the context of COVID-19, there is a lack of understanding of how families from Black racial communities have been specifically impacted and what could be done to best meet their mental health and wellbeing.
Thus, to address some of these issues, the UK Research and Innovation (UKRI) COVID-19 rapid response has funded the Black Families Involvement in New E-learning (Be FINE) project. The study is led by Dr Valentina Cardi (Principal Investigator) and colleague, Dr Juliana Onwumere from King’s College London.
The project has two main aims: firstly, to understand the experiences and impact of the COVID-19 pandemic on the parents and carers of children and young people (6–24 years) from UK Black minority ethnic communities; secondly, to explore with parents and carers the type of online information they would find helpful to develop skills to support the mental health and wellbeing of their children.
Advisory group involvement
To meet the needs of this target group and ensure their lived experiences and perspectives remain at the centre of the project, we established and are working in partnership with a key stakeholder and lived experience advisory group, comprised of members from Black racial minority communities. Members within the group are from all walks of life and their knowledge, insights, and lived experiences are invaluable in informing and guiding decisions throughout the research process.
The group has provided the space, structure, and safety for dialogues on relevant issues impacting the community and the research. The discussions and individual narratives are reflective of the wide range of perspectives within the same racial communities, which is too often overlooked within research.
For all advisory group members, the experience of being involved in research decision-making was a new experience. To reflect on this, we have co-produced with the group a written piece of work (yet to be published) about their experiences and recommendations on how to support greater inclusion from other community members in health-related research.
Over the next few months, we will be asking adult members of Black families to complete online surveys and participate in focus groups to get their unique perspectives of the challenges experienced and possible solutions. We hope the findings will advance our understanding of the unmet needs of a neglected and under-researched group. We also hope this project will develop into a wider programme aimed at developing online tools which are easy to access, acceptable, and feasible to use for Black families. These resources will be co-developed with members of Black ethnic groups and will overcome the limitations of treatments developed for, or adapted from, other ethnic groups rather than being specifically designed for the target population.
We encourage readers from Black ethnic groups who care for children or young adults to participate in our study and complete the online survey to get their views represented in the next stages of research. The link to the survey is: https://bit.ly/3KIiO13