Many South Asian migrants who settled in the UK in the 1950 and 1960s are now entering later life. Problems encountered by older people can be magnified in the South Asian population, in which language barriers and difficulties accessing healthcare have been recognised (Rait and Burns, 1997). These factors can increase the risk of health inequalities in this population. All areas in the north of England are projected to witness an increase in the number of people aged 75 years and above, including those from black and minority ethnic (BME) backgrounds (Buckner et al, 2011).
The South Asian population has an increased risk of long-term conditions, including heart disease (Rankin and Bhopal, 2001), hypertension (Bhopal and Sengupta-Wiebe, 2000), asthma (Netuveli et al, 2005), stroke (Patel et al, 2002) and diabetes (Greenhalgh, 1997). However, older people, particularly those from the South Asian population, are under-represented in health research (Hussain-Gambles et al, 2004). Thus, increasing the participation of older people from the South Asian community in research is an important first step to investigating the health inequalities in this population.
CARE75+
The Community Ageing Research 75+ Study (CARE75+) (Heaven et al, 2019) is a national, longitudinal cohort study, collecting health and social data, with a focus on frailty, independence and quality of life in older age (≥75 years). CARE75+ uses the Trials within Cohorts (TwiCs) methodology (Clegg et al, 2015), aligning applied epidemiological research with clinical trial evaluation of interventions. When people consent to participate in CARE75+, they optionally consent to be approached about other studies, thus providing a research recruitment platform for older people.
CARE75+ recruits participants from across the UK. The population of Bradford, West Yorkshire, is particularly ethnically diverse: approximately 20% of the population is of Pakistani origin, and 6.5% of this sub-population is over 75 years (Department for Communities and Local Government, 2009).
To date, 233 people from the South Asian population have been invited to participate in CARE75+, of whom 78 have been recruited, yielding a recruitment rate of 33%. Of these, 62 people are of Pakistani origin. Thus, the observed recruitment rate for South Asian participants is comparable to that for the whole study population (36%). In total, the number of participants involved in CARE75+ from the Bradford district is 560.
This article describes the experiences of two bilingual researchers (FM and IJ) of South Asian heritage who have successfully recruited people from the South Asian population to CARE75+, with an examination of the potential barriers and facilitators to successful recruitment of members of this population in research studies.
Potential barriers
Language and literacy
The main barrier to recruiting older people from the South Asian community (predominantly Pakistani) is language. Recruitment to CARE75+ follows defined steps, each of which presented language and literacy challenges, as a large proportion of Pakistani elders in the Bradford community are not proficient in either written or spoken English. The first step is an invitation letter and brief information sheet sent from the GPs. The main community dialect (Potwari) is a spoken language with no written form. Therefore, moving forward in the recruitment process typically requires translation by a family member who is proficient in written English prior to the initial telephone call by a researcher.
Researchers then call potential participants to arrange home visits to provide comprehensive study information in person. If, at this stage, the brief information sheet has not been read to the potential participant, it would mean a lengthy phone conversation, including discussions with family members and follow-up phone calls.
Sometimes, the participant's contact number is that of a family member who can undertake all bilingual communication. These ‘gatekeepers’ could either facilitate or refuse a consent visit.
Consent and assessments
One of the most challenging tasks is acquiring participation consent. CARE75+ consent includes mandatory components and optional components (e.g. consent to be approached about other studies and consent to data linkage). When consent visits are arranged, family members usually attend. The consent process is often a shared decision with several family members, who provide considerable input into the process. There is a paucity of literature on this topic; however, there is some evidence for the concept of shared family decision-making behaviour in South Asian communities (Zubair et al, 2009).
Several family members may be present during the consent visit, and they express interest in the type of questions that will be asked. However, relying on family members to translate is problematic and labour intensive (Hilder et al, 2017), requiring adaptability and sensitivity to cultural norms. The extra time needed for the information to be delivered and scrutinised must be factored in for visits. In contrast, the experience of the CARE75+ researchers suggests that white, English-speaking participants often make the decision to participate, or not, prior to the initial visit, and their family members could be present, but are usually not.
The majority of participants are able to sign the consent form. However, some South Asian participants have reported that they do not know how to hold a pen due to lack of schooling. In these circumstances, a consultee assent form is completed by a family member.
At the baseline assessment, the case report form (CRF) is usually translated into Potwari, a dialect spoken at home by approximately 90% of Bradford's Pakistanis. The bilingual researchers translate questions and constructs into this community dialect. Thus, relatively simple tests, such as the Montreal Cognitive Assessment (MoCA), can take substantially longer to complete, especially the initial visuo-spatial tasks, for example, in explaining the alternating number and letter part of the MoCA. The naming part of the test is also complicated by the use of the rhino, which has no name in Potwari and is usually described as a ‘foreign’ animal, that is, not indigenous to the Indian subcontinent. When participants are able to name the rhino, it is often in Urdu or English. The subtraction task is also difficult and can be much slower to explain and receive a response to, as is the backwards number recall task, due to low levels of literacy and numeracy.
The MoCA often takes no more than 15 minutes for English-speaking participants but may take up to 25 minutes for any non-English speaking participants, not just those from Pakistani backgrounds. Sometimes, the assessment tools also become a topic for protracted discussions, for example, it leads the participants to consider the nature of ageing from a cultural perspective.
Ensuring confidentiality
Ensuring confidentiality within a close-knit community is paramount, but can be challenging. Most Pakistani participants in CARE75+ migrated from the Mirpur region (Clegg et al, 2015) and live in a small area within the Bradford district, where kinship networks remain strong. The researchers need to be mindful that neighbours tend to know when an unfamiliar individual appears on their street. This is especially relevant if the researcher, as someone who does not live in this area of Bradford, is an ‘apna’ (insider) with a shared language, as it can be difficult to disengage from social interactions on the street without appearing disrespectful.
Potential facilitators
Involvement of social care partners
The CARE75+ study has been guided by lay representative involvement from the Frailty Oversight Group (FOG) (Heaven et al, 2016). FOG members are instrumental in signposting to specific general practices with an interest in research and large South Asian populations. This provides the researchers with the best possible sampling frame for the cohort and ensures that the study is well supported by practice staff, most of whom are bilingual. Additionally, the FOG has representation from Meri Yaadain (My Memories), a social services (adult social care)-led partnership initiative that aims to improve dementia awareness among older South Asian people. The Meri Yaadain representative is able to provide advice on the engagement, consent and the assessment study protocol.
Accounting for language barriers and cultural differences
Language barriers and cultural differences have been identified as key factors that can result in under-recruitment to research studies (Rankin and Bhopal, 2001). One potential solution is to use bilingual researchers to recruit ethnic minorities to research (Greenhalgh, 1997). In the present case, with IJ and FM being ‘apnas’ brought a shared background and awareness of cultural norms, which help them build a relationship of trust with the participants and their families. For example, one is expected to know how to greet the participant; first names are rarely used, and instead, elders are addressed as ‘uncle’ or ‘auntie’. It is also important to be mindful of seating positions, for example, one should keep an appropriate distance from the opposite sex and never make physical contact except where necessary (e.g. while assessing blood pressure). As a man, IJ often sits in the more formal lounges of homes, whereas FM, being a woman, is usually invited to sit in the more private and informal areas, such as the kitchen or dining area. The timing of contact is also very important; for example, prayer times, the month of fasting and celebratory Eid days are best avoided.
‘Outsiders’ need to ensure that they understand the social nuances of South Asian culture. Face-to-face contact allows trust and a rapport to be built. Researchers should be prepared to answer personal questions, for example, about their marital status, children, parents and where their relatives are from originally. These topics may appear intrusive, but are part of trust-building, demonstrating the ‘emotional understanding’ of the researchers, which will facilitate the assessments.
Footprint in the community
Researchers also need to be mindful about the ‘footprint’ left in the community; the aim is to engage with and show empathy towards individuals who have historically been excluded from research. This is especially important for the CARE75+ study, which has been designed as a platform for future nested studies. Evidence suggests that participation is determined by the attitude of a potential participant towards the research and their perception of the benefits arising from participation (Frew et al, 2010). In CARE75+, the retention rates of South Asian participants are higher than those of the complete cohort, with a 99% retention rate to date. However, South Asian participants also have a significantly lower rate of consent when it comes to being approached about further research (25%), compared with their white counterparts, who have a consent rate of approximately 76%. What South Asian participants often ask for is assurance that if they agree to be contacted about further research, a researcher who is from a similar background and shares the same language would be involved. If this was to be guaranteed, it is assumed that a much higher number of South Asian people would agree to participate in further research.
It is also imperative to raise the profile of research through community engagement events. This is something that the CARE 75+ study has done on a regular basis but has had low attendance from the South Asian community. The study team has taken this into consideration, and an engagement event for older South Asian people has been planned, featuring speakers who speak Potwari and Urdu. It is hoped that such events will raise the profile of the study and improve the rates of consent to participate in further research.
Conclusion
There are a range of potential barriers and facilitators that should be considered when planning any research study that will potentially involve recruiting participants from the South Asian population. Key potential barriers include the language of participants, who may speak verbal dialects with no written form, literacy of participants, who may have had no formal schooling, and the consent process as a shared family decision. Family members often act as ‘gatekeepers’ and will play a major role in important decisions, such as consenting to participate and being approached about future research. They are an important facilitator as well as a barrier to recruitment and further work to increase awareness and engagement of the wider South Asian community will be important to maximise participation of South Asian elders in research studies.
Potential facilitators include researchers having a detailed understanding of cultural norms, which also recognise the residence of participants within close-knit communities. Recruitment should be undertaken by skilled bilingual researchers who have knowledge of, and are attuned to, cultural sensitivities of a particular community. Further, extra time should be allowed for visits, and researchers should be willing to share personal information in order to build trust.
It is recommended that researchers who are planning studies that may involve participants from the South Asian population should incorporate methods to facilitate participation as part of study set-up, with a particular focus on the initial approach, the consent process and relevant social considerations that may support ongoing study engagement.
The CARE75+ researchers have found that, with appropriate facilitation, older Pakistani adults are enthusiastic about participating in research, report enjoying study participation and maintain engagement across longer periods of study follow-up, with low drop-out rates.