African and African-Caribbean Londoners' experiences of cancer services: a narrative approach

Cancer is a major illness in the United Kingdom with differences in prevalence, morbidity and mortality, across the population. The focus of this study is two-fold: firstly, to explore African and African-Caribbean Londoners' experience of cancer services and secondly to use a narrative approach, focused on cancer, specifically related to African and African-Caribbean Londoners, an approach that has not been undertaken previously. Therefore, I also aim to explore whether such a research approach has value as a reseearch tool for these communities. Five research questions frame the focus of the study, namely: What factors affected their experiences of cancer services? How did culture, ethnicity and societal factors influence their experiences? How do those factors influence the stories they tell and the way they tell them? What were good and bad practices which affected their experiences? What is the value of the narrative approach in research related to cancer focused on African and African-Caribbeans? It is intended that this thesis will have a wider methodological relevance for BME health research, as well as relevance for BME cancer service research and provide suggestions on practical application of actions to address some challenges. The African and African-Caribbean communities together form the second largest minority ethnic group in the UK, but health research foucusing specifically on cancer related to these two communities is limited. The incidence of cancer is expected to increase amongst minority ethnic communities for a number of reasons: an aging minority ethnic population and changes in lifestyle and environment. It is therefore essential to gain a greater understanding of issues for African and African-Caribbean communities which either hinders or aids in providing an enhanced positive experience of cancer services in London. London was chosen because it is the most diverse, multicultural, multiracial city in the UK and hence the assumption that it has well-developed health structures and systems in relation to cancer, which meet the diversity of its population. Narrative research using dialogic analysis is the methodology used. In-depth interviews were conducted with twelve participants who were recruited through convenience and snowballing. The nine women and three men in the study originated from Nigeria, Ghana, Kenya, Trinidad and Jamaica. The findings demonstrate that ethnicity, religion and community play a significant part in impacting on their experience with cancer services. The narratives identify factors which reflect positive and negative experiences of the engagement of Africans and African-Caribbeans with cance services. Positive experiences of cancer services were articulated from the narratives, which included clinicians apologising for mistakes and clinicians creating an environment which encouraged a positive relationship between themselves and the patient. Some of the challenges patients articulated have been addressed in previous research. These include: cultural sensitivity, lack of access to information on cancer services, lack of respect, feelings of powerlessness and vulnerability. However, areas this research unearthed from the narratives that are not addressed elsewhere are: the power of church leaders, breast self-examination (BSE) and cultural issues associated with self-examination, acknowledgement of the heterogeneity of African and African-Caribbean communities and how that is played out in health seeking behaviour and beliefs surrounding cancer. Courage and resilience are concepts which are rarely explicitly mentioned or recognised in earlier UK research, including the role black men play as carers, a subject virtually non-existent in health research. As a qualitative research method, narrative research proved valuable in enablinig an understanding of issues that affect African and African-Caribbean communities in relation to cancer and receiving cancer services. Dialogic analysis provides a basis to reveal the depth of the participants lived experience and how those experiences shape their behaviour in relation to cancer care. This thesis illustrates that like all patients with cancer, the cancer experience is an individual phenomenon. However, narratives demonstrate that those experiences are bound up in historical, cultural, social, religious and spiritual perspectives.