Meet Patience Kunonga – Research Assistant and PhD Student (Evidence Synthesis)
After completing a Master’s program in Public Health at Newcastle University in 2016, I was inspired to join the Evidence Synthesis Group (ESG) in the Population Health Sciences Institute in March 2017. I have gained significant knowledge, experience and skills in evidence synthesis methodologies, and have become one of the core team delivering outputs for the National Institute for Health Research (NIHR) Older People and Frailty Policy Research Unit (PRU).
Prior to my PRU role, I also supported the delivery of the NIHR Innovation Observatory. My research interests include social care, public health and evidence synthesis and I am currently working towards a PhD to develop a bespoke framework for the incorporation of assessments of health inequalities and/or inequities within evidence synthesis. Since joining ESG, I have co-authored peer-reviewed articles in top medical journals such as the British Medical Journal, Journal of the American Medical Directors Association, Journal of Medical Internet Research and Cochrane Database of Systematic Reviews.
COVID-19 – Palliative and End of life care experiences of people of African and Caribbean dEscent (PEACE) Project
As you may gather, previously, my skills mainly involved gathering empirical evidence from a range of sources to inform decision makers or policy changes to promote healthy ageing. However, I am currently working on a project that has taken me out of my comfort zone in terms of research methodology, but I am very excited to be part of it. The project is a qualitative piece of work, seeking to explore the end-of-life-care experiences of people of African and Caribbean descent during the COVID-19 pandemic. It is a collaboration between Newcastle University and University of Manchester, is funded by the NIHR Policy Research Programme led by Dr Felicity Dewhurst, an NIHR Academic Clinical Lecturer in the Population Health Sciences Institute and an Honorary Consultant at St Oswald’s Hospice in Newcastle. For the project, I am the Patient and Public Involvement (PPI) lead, which means I have to engage with the public to ensure their experiences and views are heard. As we celebrate Black History Month, an annual event to honour the history and celebrate the achievements of Black people in the UK, it is fitting that I reflect on how research plays an important role in trying to understand and tackle existing health inequalities, with a focus on how this affects people of African and Caribbean descent.
What is end-of-life care?
End-of-Life-Care (EOLC) refers to the treatment, care and support for people who are nearing the end of their life. It helps people live as comfortably as possible, thereby improving their health-related quality of life in the time they have left. Despite these benefits, it is surprising that one in four UK families miss out on such crucial support, particularly those from African or Caribbean descent. Research into EOLC for this particular group is scarce, probably because they represent only 3.3% of the UK population. However a recent article on the disparities of access to EOLC services among Black, Asian and Minority Ethnic (BAME) groups, suggest that ethnic minorities, as a whole, are less likely to engage in end-of-life care planning activities. I find this quite disheartening as this means that we do not know why engagement is low, despite national research calls for such information. A recent study shows that Black people are 4 times more likely to die of COVID-19 than white people, making it imperative that we understand and redress these disparities. As a Zimbabwean based in the UK, my roots play an important role in some of the decisions I make and I am interested to know whether some of the reasons why Black people do not engage with EOLC services are comparable across cultures.
So, what are we doing?
We have been actively recruiting participants through emails, posters, flyers, social media and a radio appearance. However, the uptake of recruitments is low, and I am going to take this opportunity to make an appeal for your help with recruitment. We are in desperate need and would really appreciate your help to share this opportunity with your wider network.
We are seeking bereaved relatives, health and social care professionals and community workers to take part in the study. We feel that professional carers, regardless of their ethnicity, could offer a different perspective on the subject since they offer a broad range of services and can be diverse in their provision, e.g. who they support and how.
If you are over 18 and you cared or provided support for someone of African and Caribbean descent who died (of any cause) during the pandemic, we want to hear from you. We want to know your views on how EOLC can be improved, particularly how barriers to good care and the inequity of care provision can be reduced.
How to get involved
If you are interested in taking part and would like more information, please email PEACE@newcastle.ac.uk, call 07708 649459 or follow the link below: https://www.opfpru.nihr.ac.uk/get-involved/#PEACE
In summary, my experience with the PEACE project so far has made me realise that Black people are less willing or reluctant to take part in health research. So, as we celebrate Black History Month and honour the historical contributions made by people of African and Caribbean descent, as academic researchers, we need to reflect on effective ways we can engage and attract people of African and Caribbean descent to take part in health research.