PERCEPTIONS AND EXPERIENCES OF PROSTATE CANCER AMONG AFRICAN MEN LIVING IN LONDON
ABDULFATAH ABDULWARITH BAMIDELE ID Number: 201215760
Dissertation submitted in partial fulfilment of the requirements for the degree of Master of Public Health, The university of Liverpool
AUGUST 2017
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Declaration No portion of this work has been submitted in support of an application for degree or qualification of this or any other university or institute of learning.
Signature:
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ABSTRACT
Background: In the United Kingdom, African men are disproportionately affected by prostate cancer with higher incidence rates reported. They are a group that face health inequalities due to poorer wider determinants of health. However, there are limited studies exploring their experiences and perceptions of prostate cancer. This study seeks to answer the question: ‘what are the experiences and perceptions of prostate cancer amongst African men in London?’
Aim: To explore the perception and experiences of prostate cancer among African men living in London.
Methods: A qualitative methodology using a social constructionist approach was adopted. Ten men were purposively selected and took part individually in audio-recorded semistructured interviews. There were three men with a previous diagnosis of prostate cancer and the seven of them had no previous diagnosis. The interviews were transcribed and subjected to thematic analysis.
Results: There was limited knowledge of symptoms of prostate cancer, risk factors and screening tests amongst the participants. Men diagnosed with the condition became aware of prostate cancer after the diagnosis. Although a prostate cancer diagnosis ‘shattered’ ideals of being a man in particular their sexual lives, wives played an important caring role.
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Conclusions: Insights suggest that women, religious institutions, and men’s networks should be engaged in promoting men’s health.
Abstract word count: 213 words Dissertation word count: 9897 words (excluding abstract, references, appendices, figures, tables and standalone text-boxes.)
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ACKNOWLEDGEMENT The last few months has been an intense period of learning for me both on a personal and academic level. For that reason, I will like to reflect on the people who have helped and supported me throughout this period. I would like to express my profound appreciation to my supervisor, Dr Martha Chinouya for her guidance and supervision throughout the study. The men who shared their personal experiences with me. Member of staff of African Health Policy Network for their support. Coordinators of London-based organisations working with African men living in London for their help in recruiting participants. The university of Liverpool MPH core team for their guidance during the initial development and proposal stage of the dissertation. And finally, I would like to thank my family and friends for their support and understanding particularly in the last twelve months.
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LIST OF ABBREVIATIONS BME
Black and Minority Ethnic
CRUK
Cancer Research United Kingdom
DCLG
Department for Communities and Local Government
DH
Department of Health
DRE
Digital rectal examination
GLA
Greater London Authority
GP
General Practitioner
IMD
Index of Multiple Deprivation
IPHS
Institute of Psychology, Health and Society
MEDLINE
Medical Literature Analysis and Retrieval System Online
MPH
Master of Public Health
NAEDI
National Awareness and Early Diagnosis Initiative
NCPES
National Cancer Patient Experience Survey
NHS
National Health Service
NSP
National Screening Programme
ONS
Office for National Statistics
PC
prostate cancer
PSA
Prostate surface antigen
UK
United Kingdom
USA
Unites State of America
WBE
White British Ethnic
WHO
World Health Organisation
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TABLE OF CONTENTS ABSTRACT .................................................................................................................................... iii ACKNOWLEDGEMENT ................................................................................................................... v LIST OF ABBREVIATIONS .............................................................................................................. vi TABLE OF CONTENTS ................................................................................................................... vii LIST OF FIGURES ......................................................................................................................... viii LIST OF TABLES........................................................................................................................... viii LIST OF TEXTBOXES .................................................................................................................... viii
1.0
INTRODUCTION AND BACKGROUND ........................................................................ 9
2.0
LITERATURE REVIEW .................................................... Error! Bookmark not defined.
3. 0
METHODS ..................................................................... Error! Bookmark not defined.
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RESULT .......................................................................... Error! Bookmark not defined.
2.1 SEARCH STRATEGY ............................................................... Error! Bookmark not defined. 2.2 LITERATURE REVIEW ............................................................ Error! Bookmark not defined. 2.2.1 AFRICAN MEN AND HEALTH IN THE UK ............................ Error! Bookmark not defined. 2.2.2 PERCEPTIONS ABOUT PC .................................................. Error! Bookmark not defined. 2.2.3 EXPERIENCE OF PC ........................................................... Error! Bookmark not defined. 2.2.4 IMPACT OF CULTURE AND ETHNICITY .............................. Error! Bookmark not defined. 2.3 RESEARCH QUESTIONS ........................................................ Error! Bookmark not defined. 2.4 AIMS .................................................................................... Error! Bookmark not defined. 2.5 OBJECTIVES.......................................................................... Error! Bookmark not defined. 3.1 3.2 3.3 3.4 3.5 3.6 3.7
WHY A QUALITATIVE STUDY................................................ Error! Bookmark not defined. THEORETICAL APPROACH AND EPISTEMIOLOGY ................. Error! Bookmark not defined. POSITIONALITY .................................................................... Error! Bookmark not defined. ETHICS ................................................................................. Error! Bookmark not defined. PARTICIPANTS ..................................................................... Error! Bookmark not defined. DATA COLLECTION ............................................................... Error! Bookmark not defined. DATA ANALYSIS ................................................................... Error! Bookmark not defined.
4.1 PARTICIPANTS ..................................................................... Error! Bookmark not defined. 4.2 THEMES ............................................................................... Error! Bookmark not defined. 4.2.1 BEING AN AFRICAN MAN ................................................. Error! Bookmark not defined. 4.2.2 UNDERSTANDING OF HEALTH AND PROSTATE CANCER.... Error! Bookmark not defined. 4.2.3 EXPERIENCES OF PROSTATE CANCER................................ Error! Bookmark not defined. 4.2.4 CULTURE AND UNDERSTANDING OF HEALING ................. Error! Bookmark not defined.
5.0 DISCUSSION ........................................................................ Error! Bookmark not defined.
5.1 CONSIDERATION OF RESULTS IN WIDER CONTEXT OF THEORY AND RESEARCH .......Error! Bookmark not defined. 5.2 STRENGTHS AND LIMITATION ............................................. Error! Bookmark not defined. 5.2.1 Research design ............................................................... Error! Bookmark not defined. 5.2.2 Reflexivity ........................................................................ Error! Bookmark not defined. 5.3 POLICY IMPLICATIONS ......................................................... Error! Bookmark not defined.
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CONCLUSION AND RECOMMENDATION ....................... Error! Bookmark not defined.
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REFERENCES .................................................................. Error! Bookmark not defined.
APPENDICES ...................................................................................... Error! Bookmark not defined.
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LIST OF FIGURES Figure 1: Economic activity of people aged 16-64, by ethnic group in England and Wales, 2011 ............................................................................................................................ 11 Figure 2: Social Determinants of Health.............................................................................. 12 Figure 3: Map of Index of Multiple Deprivation 2015, London............................................. 15 Figure 4: Flowchart of data retrieval and review ...................... Error! Bookmark not defined.
LIST OF TABLES Table 1: List of organisations where grey literature, reports and relevant publications were sourced via hand searches ................................................ Error! Bookmark not defined. Table 2: Inclusion/ Exclusion criteria for men with previous diagnosis of PC Error! Bookmark not defined. Table 3: Inclusion/ Exclusion criteria for men with no previous diagnosis of PC ............ Error! Bookmark not defined. Table 4: Details of Participants ................................................. Error! Bookmark not defined. Table 5: Emerged themes from the data analysed from 10 participants regarding their perception and experience of Prostate cancer.................... Error! Bookmark not defined.
LIST OF TEXTBOXES Text-box 1. Other participants response to why they think they are Africans………………28 Text-box 2. Other participants’ response to what it means to be a man…………………….29 Text-box 3: Disease prompted awareness…………………………………………………...32 Text-box 4. Experience of how they found out about their diagnosis……………………….34
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1.0 INTRODUCTION AND BACKGROUND 1.1 INTRODUCTION
This study is about the perceptions and experiences of prostate cancer (PC) among African men living in London. The study is important because PC remains the second most common cause of deaths in males from cancer after lung cancer as reported by Cancer Research UK in 2014 (1,2). Sadly, PC is also estimated to be the most commonly diagnosed cancer in the United Kingdom (UK) amongst men in 2030 (3). More importantly, there is significant ethnical/racial variation in the mortality and morbidity of the disease (4,5). Several studies have reported PC to be more common in black men compared to their Caucasian male counterparts and least common among the Asian males (1). Studies have also reported that PC is more aggressive among black men (6-8) than in white men. The high burden of the disease among African men thus makes it an important public health issue in England and the UK as a whole. It is therefore important to explore the understanding and experiences of PC among this high-risk population to inform public health practice.
1.2 BACKGROUND Prostate cancer is the cancer of the prostate gland. The prostate is a walnut-sized gland which is part of the male reproductive system. It wraps around the male urethra as it exits from the bladder (9). It is located between the bladder and the penis and lies in front of the rectum. It is responsible for ejaculation and fertility in men (10). Procreation is an essential mark of manhood and family life amongst many communities. Therefore, if the prostate becomes
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diseased, it becomes a problem to him and also to his family. This is because of the huge emphasis fertility plays in most African families (11). For example, in Ghana, it is believed that no one is as unfortunate as a man without a child (11). Hence, the prostate defines a man. Common diseases affecting the prostate are Prostatitis, Enlarged prostate and prostate cancer (10).
The term ‘black African’ was used in the 2011 census to classify the foreign-born population of the UK that was born in Africa (12,13). This suggests country of birth is a strong reference to the classification of ethnicity in the census. While some have opined the term is condescending and racist (14), some members of the ethnic group have identified with the term, saying it reflects their ancestral origins (13). However, the term ‘African’ will be used in the study rather than black African to refer to this population. The African community remains one of the largest group of the Black and Minority Ethnic (BME) group living in the UK (15,16) constituting about 2% of the UK resident population and 17% of the non-UK born population.
Evidence has also suggested a pathway between socioeconomic status and poor health outcomes (17,18). Again, we look at the social determinants of health and how this affects the health status of African men. Studies have shown that African men are characterised with poor socioeconomic indices. The 2011 census data demonstrated black Africans had one of the highest unemployment rate (13%), 8-percent higher than the ‘white British’ ethnic (WBE) group and relatively low employment rate (59%), significantly below the white group (Figure 2).
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Figure 1: Economic activity of people aged 16-64, by ethnic group in England and Wales, 2011
Source: Office for National Statistics. (13)
The black African group also had one of the highest proportion (54%) of men in low-skilled occupation (13,19). The low-skilled jobs often prompted them to take long hours to meet their financial needs thus leaving no time for health visits (20). Furthermore, data from ONS suggest that the Africans have lowest rates (24%) of house ownership and a significant proportion (42%) living in social care housing (21). The low ownership rate reflects their disadvantage in the labour market and subsequent difficulties in securing a mortgage. They often live in housing that lacked central heating and overcrowded, particularly in London (13). Harries and Finney reported about thirty-five percent of black African accommodation was overcrowded, the highest proportion of any ethnic group (22).
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Figure 2: Social Determinants of Health
Figure 2 sourced from Dahlgren-Whitehead 1991(23)
Studies have shown that African men who live in the most deprived areas in the UK that are characterised by overcrowding, high crime rates, noise pollution (24) and experience poorer health outcomes (13). A critical analysis of the English index of multiple deprivations (IMD) by Jivraj and Khan established deprivation is widely varied with ethnicity. In 2011, about 23% of the African community lived in the most deprived neighbourhood (10-percentile) with just 5% living in the least deprived areas compared with 22% of the white British group (13,25,26). Jivraj and Khan further suggested that the effects of living in the poor neighbourhood include stigma, negative socialisation, institutional underinvestment, over-demand for public service
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and lack of network to better opportunities (13,26) They often engage in less healthy lifestyles such as smoking, drinking, drug abuse and eating unhealthy foods as a coping mechanism for dealing with their difficult social circumstances. Additionally, evidence have shown the poor socioeconomic status faced by these men create psychosocial stress which make them vulnerable to unhealthy lifestyles therefore increasing their risk of diseases, injury or premature deaths (24).
The current surge in the academic interest in nature and function of the embodiment has provided another dimension to understanding health and illness (27,28). Masculinity has typically been associated with toughness in the face of adversaries including health problems (29). Robertson highlighted the ‘don’t care/should care’ dichotomy found amongst young men when it comes to their health issues (27). They are less likely to seek health advice than women despite being at higher risk (30). Men also perceive screening tests such as Digital Rectal Examination (DRE) as a threat to their masculine identity (31,32). Others see their health problem as a test of their masculinity and therefore must show perseverance on such occasions (33,34).
Masculinity is not a universal concept; rather it is socially constructed (35). This brings us to investigating the concept of masculinity among African men. There are various misrepresentations of African men by early writers. Earlier studies described the African man as being a problematic, troublesome or deviant individual (36,37). However, what many of these studies fail to account for is explore African man’s experiences from their standpoint. Staples and Cazenave were among the first researchers to provide an alternative view of masculinity among African men (38,39). They described them as provider and family-oriented in contrast to the paternal absenteeism reported by Moynihan (37). They also provided answers
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to questions raised in early studies about African men relating the ‘disturbed’ character of the African man to be a product of institutionalised racism, unemployment, incarceration and living in deprived areas.
The Setting The 2001 census data showed that London contained 79% of the total black Africans living in England and Wales such that every four out of five Africans in England and Wales live in London (13). However, recently, there have been significant residential changes as evident in the 2011 census. It demonstrated a dramatic spread out of London (13,16). Nonetheless, 58% of this population still reside in London according to the census data. The above statistics is significant to the study as it demonstrates reasons why London is ideal for exploring the perception and experience of PC among African community in the UK.
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Figure 3: Map of Index of Multiple Deprivation 2015, London
Source: Indices of Deprivation, 2015, DCLG GLA Intelligence
To understand and reduce the burden of PC among African men, it goes beyond screening. There should be a comprehensive approach to addressing the social determinants of health and identifying the reasons for the high prevalence of PC among African men. Outside screening and health behaviours such as health visits, diet and exercise, it is important to recognise that the socioeconomic positions of some of the African men (e.g. poor housing, educational level, income) makes them vulnerable to ill-health (13,24). Besides, it is important to consider how masculinity influences men’s understanding and experiences of PC.
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