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Title: From policy to practice : exploring the burden of hepatitis B & C in the UK Nepali community, and the barriers to community migrant testing
Author: Mathew, Sanju
ISNI:       0000 0004 7960 9416
Awarding Body: University of Surrey
Current Institution: University of Surrey
Date of Award: 2019
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Context: The UK Nepali community is a unique migrant population, with recent expansion and presence in the UK following the approval of settlement rights to Gurkha veterans and their dependents granted from 2004 to 2008. The community is heterogeneous in relation to caste and religion, with Ghurkha military ties the principal denominator to bind this newly arrived population. Many in the community have settled close to military institutions, with a new migrant population that has emerged as a result around the Aldershot area in Hampshire and Surrey. The health awareness and needs of the UK Nepali community is poorly understood, including in chronic viral hepatitis (CVH), with increased hepatitis B and C (HBV and HCV) risks that are well described in migrant groups from the neighbouring countries of India and China, but with no previous studies in the UK Nepali population. HBV and HCV is a global disease, and carries a higher death toll than that seen in comparison to HIV or tuberculosis. CVH disproportionately affects some migrant groups, with case-finding to test at-risk groups part of national guidance by the National Institute of Health and Care Excellence (NICE), as well as the World Health Organisation (WHO), with WHO goals that look to eradicate HBV and HCV by 2030. At the same time, migrant groups such as the recently arrived Nepali community face growing political and social pressures, with rising nationalism and anti-migrant sentiment seen across Europe, and with blood borne virus rates that have been specifically targeted by right-wing political groups in the UK. CVH is typically asymptomatic until advanced and severe complications develop; but with highly effective and well-tolerated treatments available if disease is identified at the right time. Effective case-finding to identify CVH in at-risk groups is therefore a priority, and a key aim of national (NICE) CVH testing guidance. The awareness and implementation of this policy is however largely unknown, with particular deficits in our understanding of testing activity in primary care, which remains crucial to delivering CVH testing in migrant communities nationally. The following study therefore presents a comprehensive exploration of the potential barriers and facilitators that exist towards CVH testing in migrant groups, taking the Nepali community as the focus of this thesis. It explores the factors that exist at the policy level towards effective testing delivery in migrant groups, and at the local (community) level towards CVH testing in primary care, and compares the understanding and perception of the newly arrived Nepali community towards liver disease, and the development of a community based study to identify the CVH risks in the local Nepali population. Intervention: At the macro-level a policy prioritisation framework was utilised to look at the factors that influence how CVH testing policy can achieve political attention and resources for its implementation. At the community (micro) level, focus group studies were undertaken with members of the Nepali population to explore the awareness, knowledge and perception of liver disease, as well as the potential risks and barriers that may exist towards health engagement strategies. Qualitative focus studies were also conducted with General Practitioners (GPs) from 3 local GP practices who serve the recently arrived Nepali community, to understand the awareness, knowledge and perception of CVH testing in migrant groups. A dedicated community-based testing intervention was then developed to directly assess HBV and HCV prevalence in the local Nepali community, building on the findings from local focus group studies. Outcome: At the policy level, the National Institute for Health and Care Excellence has produced CVH testing recommendations that are far-reaching, and would have a positive impact on CVH testing in migrant communities, including the UK Nepali population. However, policy has been developed in a top-down approach, without clear leadership to coordinate testing activity, and without community level cohesion that is evident at the Local Authority, local health service (currently Clinical Commissioning Groups (CCG)) or primary care level. At the micro-level, focus group studies in the Nepali community identified high-levels of awareness of liver disease, and although understood principally as "jaundice", liver disease is viewed as a disease to be feared. Whilst perceptions of stigma are evident, with associations to extrinsic agents such as Spirits and Witch Doctors in disease and cure, there is an overwhelming desire to engage with modern healthcare approaches in the UK, with primary care a trusted and well sought counsel to learn about liver disease. Focus group studies in primary care though suggest significant barriers to CVH testing in migrant groups, with low levels of awareness and knowledge towards existing policy, and with active perceptions of prejudice and harm if they were to engage in CVH testing activity in migrant communities. As part of a dedicated testing study, HBV and HCV testing was undertaken in 1005 participants (984 unique individuals) from the local Nepali population, with the close and integral involvement of a specially developed Nepali research committee. DBS (Dry-blood spot) testing was used to deliver testing at centrally located community sites. Significant anti-migrant sentiment was expressed during the study, limiting the ability for formal study advertising through written or visual media. Despite this, we were able to recruit close to 1000 members of the local community, with word-of-mouth a powerful route to disseminate testing information in the Nepali community. Absolute rates of active CVH were low, with HBsAg detected in just 3 (0.3%) of individuals and HCV Ab detected in 4 individuals(0.4%), although none of these participants had detectable RNA levels on subsequent testing. Evidence of previous HBV exposure was however raised, with 9.25% (91) of participants demonstrating HBcAb positivity. Associated risk factors for HBcAb positivity were lower educational status and male gender. Conclusion: Overall, the absolute rates of active CVH appear low in Nepali community, but with higher rates of previous hepatitis B exposure that warrant the need to understand disease risks in the wider Nepali community. At the policy level, there are gaps in the effectiveness of policy across the policy prioritisation framework, with a lack of leadership and direction to facilitate testing at the community level. Members of the Nepali community view CVH as a disease to be feared, and whilst stigma arises as a perception towards liver disease, the overwhelming emphasis is a wish to engage with health care professionals, with good levels of engagement demonstrated in our subsequent community-based testing studies. The perceptions raised in primary care though demonstrate a reluctance to engage in CVH testing activity in migrant groups, with the need for further interventions to modify testing behaviour if we are to reach global and national CVH eradication goals.
Supervisor: de Lusignan, Simon ; Whyte, Martin ; Ala, Aftab ; Hendy, Jane Sponsor: National Institute for Health Research (NIHR) ; National Gilead Fellowship Award
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral