Determinants of uptake of hepatitis B testing and healthcare access by migrant Chinese in the England: a qualitative study

The overall study aim was to identify barriers and enablers of hepatitis B testing and healthcare access by migrants of Chinese ethnicity living in England. These processes were explored sequentially through a series of qualitative investigations with community members and patients self-identifying as ‘Chinese’, healthcare practitioners, as well as managers and clinicians responsible for the planning and strategic purchasing of health services (referred to as ‘commissioners’). This approach was adopted as the uptake of HBV testing and healthcare access was thought likely to be influenced by complex interactions between various stakeholders, the health system and the wider health policy arena [21]. This multi-perspective approach, a unique strength of this study, sought to integrate and contextualise the knowledge and behaviours of migrant Chinese individuals, clinicians and commissioners within the backdrop of current health policy, organisation and delivery.

This study was conducted between September 2013 and September 2015 in South Yorkshire, England. We defined our study population broadly to include any individual who self-identified as Chinese. This includes not only migrants born in China, but also those originating from other parts of East and Southeast Asia, such as Malaysia, Taiwan, and Vietnam, where there are established Chinese communities. They include different migration waves (including place of origin, time of migration) as well as different generations of migrants (e.g. children of first generation migrants). In addition, the Chinese communities in South Yorkshire are also geographically dispersed in the region. As such, the label ‘Chinese’ covers a heterogeneous group of individuals with diverse linguistic and cultural heritage and varied socioeconomic profiles.

Six focus group discussions were conducted involving 31 Chinese adults resident in South Yorkshire recruited through community groups, local venues and via snowballing. The focus groups were organised around natural groupings to facilitate participation. They included mothers with young children, elderly residents, university students, parents of children attending a Chinese school, and a Chinese community centre group. We used a case vignette developed from initial ethnographic field work and a topic guide to facilitate discussions (see Additional file 1). A multi-lingual researcher facilitated three focus group discussions in Mandarin and three in Cantonese.

Subsequently, 20 in-depth face-to-face individual interviews were conducted with new participants recruited using the same recruitment channels as for the focus groups. Interviewees included 13 who reported having HBV infection, three relatives of individuals who had HBV infection, and four community workers. Interviews explored individual narratives and patient journeys. Preliminary findings from the focus group discussions informed the interviews and enabled some issues to be explored in greater depth, such as stigma and knowledge sources. Written informed consent was sought from all participants, and participants received reimbursements of their travel expenses for their involvement in the study where required. The interview guide used for the community interviews are provided in Additional file 2.

Individual, semi-structured interviews with clinicians were conducted to explore behaviour and attitudes towards hepatitis B testing and referral, as well as their personal experiences of dealing with hepatitis B and patients identified as ‘Chinese’. We recruited clinicians who were involved in hepatitis B care or provided healthcare to Chinese patients through purposive, convenience and snowballing sampling in order to obtain a range of views. We interviewed 21 clinicians drawn from five localities from different settings (hospitals, primary care and the community) and from different specialities (primary care, infectious diseases, sexual health, nephrology, rheumatology and midwifery services). Interviews were guided by an interview schedule (see Additional file 3) which drew on our initial literature review [22] and early findings from the community study.

We also purposively sought and interviewed clinicians and managers involved in commissioning or managing hepatitis B services or health services for ethnic minority groups. Potential participants were identified with the help of our expert advisory group, and existing links with various commissioning organisations. Snowballing was used to identify other key individuals who held relevant roles. Nine participants were recruited that included directors of public health, consultants in public health and communicable disease control, and senior commissioning managers working across a range of different commissioning organisations at local, regional and national levels. Individual interviews were conducted face-to-face using an interview schedule of open-ended questions (see Additional file 4) to explore participants’ awareness and knowledge of the disease, attitudes, perception of risk in the Chinese population, as well as perceived individual and system obstacles to the commissioning and delivery of relevant services.

Following written informed consent, focus group discussions and individual interviews were conducted in mutually convenient venues either in community venues, workplace or university setting, and lasted between 40 min and two hours. The interviews and discussions were audio recorded with the participants’ consent and carried out on the condition of participant anonymity.

Audio recordings were transcribed verbatim and subsequently translated where necessary for further analysis. For the community study, a set of thematic codes was developed drawing on our literature review [22] and initial ethnographic fieldwork. The coding scheme was iteratively developed by reading and re-reading the transcripts and through research team discussions. Once agreed, the thematic codes were applied systematically across the group discussion and individual interview transcripts. For the subsequent studies of clinicians and commissioners, deductive and inductive interpretive approaches were used to identify key themes. Descriptive coding and process coding were used to summarize passages of data and thematic content analysis was applied to organise and consolidate relevant themes [23].

Emergent themes from the different studies were integrated through a series of team workshops to identify key factors operating at individual, family, community and health service level that shape access, experience and outcomes of healthcare. We looked for matching themes and links between emergent themes, explored discordant themes and sought to understand reasons that could explain the discordance. Disagreements were discussed until consensus was reached. Complementary themes were grouped and re-grouped into higher themes and are presented in the following section.

Two validation workshops were conducted in Sheffield and London with stakeholders from across the country. There was representation from Public Health England, local authorities, clinical networks, primary care and Chinese community organisations. Participants included hospital physicians, general practitioners, commissioners, consultants in public health and communicable disease control, nurses, immunisation leads and community representatives. Stakeholders were identified with the help of our Expert Advisory Group, and purposively selected in order to have a breadth of perspectives. The workshops were used to assess the generalisability of the findings to other parts of the country.

There was poor knowledge of the disease amongst the Chinese participants interviewed, as well as among the clinicians and commissioners (Table 3). All three groups had knowledge gaps related to transmission routes, disease prevalence within the Chinese populations, and associated health complications. There was a lack of awareness of the asymptomatic nature of the infection among Chinese participants which contributed to delayed health-seeking and an erroneous underestimation of their personal risk of infection. Many were unaware of services available in the UK, and did not appreciate the need for long-term disease monitoring in those with chronic infections.

Poor understanding was evident among in-depth interview respondents who reported having the infection as well as those who participated in the focus group discussions. For example, some Chinese patients could not understand why tests were carried out on them but no treatment was provided (these patients presumably did not have active disease that required treatment and were probably being managed conservatively). This led to follow-up consultations being perceived to be “a waste of time”. Some Chinese participants expressed a mistrust of western medicine. Self-medication was commonly reported in the focus groups, including the use of traditional Chinese medicine and “food therapy” where certain herbal stews and drinks were consumed on health grounds “to detoxify the liver”. Importantly also, focus group discussions indicated that the belief that HBV is transmissible through shared food utensils was widespread. Community respondents reported difficulties in accessing reliable information in England and relied on Chinese language websites that were found to be inaccurate when examined by our clinical researchers and multi-lingual researcher.

Experience of stigma associated with the disease was evident among some, but not all, the community respondents, illustrating important heterogeneity within the group of people identifying as ‘Chinese’. Some participants voiced concerns of the repercussions of a HBV diagnosis such as the potential loss of employment and social exclusion. Some of this stemmed from their past experience of the disease’s stigma in their home countries – some focus group respondents and interview participants recounted how in their home countries infected persons were seen as a “public nuisance”. The Taiwanese group of Chinese associated the disease with “moral deficit”, caught by “sleeping around” or “using needles”. Some participants believed, perhaps erroneously, that they were not at risk as they led a “stable life”, did not use illicit drugs, and knew of no family members with the disease. Although individuals could freely access hepatitis B testing at genito-urinary medicine clinics, we found that these services also carried stigma and some Chinese participants worried about being seen at these clinics because of their association with sexually transmitted disease. Similarly, some respondents with the infection feared that attending hepatitis clinics could inadvertently result in the disclosure of their infection status if they were seen there. Due to the fears and shame of disclosure, patients also found it difficult to inform family members who were at risk. This situation was worsened by the fact that their families could be geographically dispersed.

Clinicians and commissioners interviewed also had poor awareness of the disease prevalence in this community. Many were unfamiliar with current testing protocols and national guidance (i.e. NICE guidance CG 165 and PH43) [24, 25]. This meant they did not always accurately perceive the risk of this disease in their Chinese patients and missed opportunities to offer testing.

Another significant thematic group was the relatively low visibility of hepatitis B and, more generally, the health needs of the Chinese population in the UK (Table 4). In the focus group discussions participants noted that it was unusual to be discussing hepatitis B and that there was little social discourse about hepatitis B in the UK, both in the general public as well as within Chinese communities. Some clinicians also expressed the opinion that the Chinese used health services sparingly and tended not to prioritise their own health. Our community-level data supported this - new immigrants reported giving low priority to their own health (especially for asymptomatic conditions) in the first few years after arrival. Moreover, as they tended to be “undemanding”, busy clinicians were unlikely to delve into their health concerns fully or to proffer hepatitis B testing.

The lack of visibility also meant that both clinicians and commissioners were unaware of the high disease prevalence and attendant health needs in the Chinese. Our commissioner respondents described the Chinese as not being “needy” or a “problem group” and were perceived to have relatively good health compared to other ethnic groups. However, when pressed they admitted not having any evidence to support this view. Language barriers and the lack of strong advocates meant the needs of the Chinese were not articulated to commissioners. This situation was compared to that of some Eastern European groups who, it was observed, were the focus of considerably more vocal advocacy, such as from local politicians. As the Chinese were fairly dispersed nationally and present in small numbers in each locality, as one commissioner described, they were “hidden in the statistics”. In addition, other competing demands on limited commissioning resources meant their health needs were not seen as a commissioning priority. Consequently, respondents identified a need for greater advocacy for this population group in general, and this health issue in particular.

Barriers also exist and operate at different levels within the health system from the micro-level of the patient-provider interaction through to the macro-level of health service commissioning and policy making. At the patient-provider level, the health professionals identified issues such as the lack of language support and variable health literacy of interpreters (Table 5). At the service level, there was uncertainty as to whether HBV testing was funded within existing contractual arrangements. This meant clinicians were at times unsure whether they could offer it free of charge to patients. Similarly, at the policy level, commissioners reported there was a lack of clarity as to who was responsible for commissioning and providing HBV testing for this population. The provision of HBV-related care to this population came at a cost to healthcare providers and commissioners, both in terms of time and resources, and there were perverse disincentives within the system that deterred the provision of HBV testing. One clinician explained how they were not remunerated for carrying out routine HBV testing in primary care, and the identification of infected individuals implied added healthcare costs, as they were likely to be “over-followed up” (i.e. needed to be seen several times in hospital), at a time when cost-containment was a priority.

The needs of Chinese patients were also not always articulated and addressed due to language barriers. One prominent theme that emerged from all of the focus group discussions and many of the individual interviews with Chinese participants, across all age groups and educational status, was of their struggle to explain themselves to the health professionals. Similarly, the health professionals interviewed reported that consultations were more time consuming and that it was more difficult to check the Chinese patient’s understanding or concerns. Furthermore, the health professionals interviewed of Chinese ethnicity and those familiar with transcultural consultations observed that Chinese patients were unlikely to challenge their doctors’ decisions or to voice their concerns.