How to improve uptake and adherence to dietary trials in gestational diabetes amongst South Asian women: insights from patient and public involvement and engagement

Priority 1: Vulnerability

Contributors described a sense of vulnerability which could be exacerbated by the pregnant state, which was felt to contribute to a potential fear and reluctance to take part in the research. This included both systemic vulnerability as a minoritised group and a personal loss of control throughout pregnancy, particularly when complicated by health complexities such as GDM.

Focus area 1.1: Trust

Contributors described an underlying mistrust of both healthcare professionals and researchers based in historical abuse and discrimination of minoritised groups. One contributor described hearing about illegal activities in research in the news and recognised that many women may be put off taking part in research because of a fear of how personal information or blood samples may be used. Many of these stories were said to be passed down from previous generations who had either faced discriminatory practices or knew of someone who had been affected by unethical research activity. There was a general sense of unease about trusting those who promoted research and anxiety amongst some about how taking part may be perceived within their community. It was suggested that leaflets which explained the importance of taking part in research to the wider family could be helpful in promoting uptake.

Clear and concise information was suggested to encourage women to take part, particularly that which explained clearly how personal information would be used. It was noted that there must be a balance between adequate and transparent information provision and simplicity, as too much information can be overwhelming. Contributors suggested flexibility in information provision, with in-person explanations viewed positively.

It was suggested that word of mouth amongst the South Asian community would make women feel safer about taking part, particularly if the message was coming from a trusted voice within the community. There were varied opinions about who would be classed as a ‘trusted voice’; some viewed midwives as the best source of information and others suggested that the message would be better received from someone from the same ethnic background, language and culture. This was relevant as the main researcher approaching women in clinic for our diet study was White British, which could have reduced engagement. Seeing the same person throughout the pregnancy and/or research activity was deemed important to developing trusted relationships and maximise engagement.

Contributors suggested that women may not understand why research amongst those with gestational diabetes is important; without this understanding they may not believe that their participation is necessary or valued thereby further reducing engagement. A more overt message as to ‘why me, why now’ may increase uptake from marginalised groups, particularly as contributors suggested many women feel a sense of purpose and duty in helping their community.

Focus area 1.2: Loss of control

Pregnancy was viewed as a time during which women may feel a loss of control, with an often unexpected diagnosis of GDM intensifying this. It was suggested that the research could be viewed as adding extra rules and restrictions during a period of already heightened stress which could be off-putting.

Dietary advice in GDM was perceived as restrictive, and taking part in research was viewed as an extra burden that women may not want. Contributors talked about rules coming from both healthcare professionals and family members, with many women referring to intergenerational and cultural beliefs around diet and physical activity during pregnancy which are likely to impact pregnant women’s health behaviours. Many contributors did recognise that taking part in research may be supportive and helpful, with additional monitoring and appointments throughout pregnancy likely to be perceived positively.

Food cravings and reduced energy levels were reported frequently amongst the contributors as powerful factors likely to limit women’s ability to control their diet during pregnancy. Food cravings amongst South Asian women were said to be perceived as the body being deficient, thus creating a perceived need to be fulfilled even if the desired foods are unhealthy. Fatigue may also reduce motivation to adhere to healthier diet plans, with sugar viewed as a quick energy source. This sense of restriction coupled with the strong physical desire for particular foods may lead to denial and poor dietary adherence.

Contributors suggested that clear tables of healthier alternatives which could satisfy cravings would be very useful and likely to improve adherence to dietary interventions.

Priority 2: Accessibility

Accessibility to taking part was identified as a key opportunity for increasing uptake and engagement.

Childcare responsibilities were commonly cited as a barrier to taking part in the research, often reported as a barrier to being able to participate fully in routine healthcare and research appointments. It was recognised that in many South Asian households the burden of childcare falls on the woman and as such the timing and delivery of appointments is a critical factor in participation in, and adherence to, research activity, as is ensuring the proposed intervention is simple and easy to follow. Flexibility of provision of information was suggested, with written information available to supplement discussions where possible.

The study involved face-to-face clinic research appointments and remote phone/video phone dietary advice from an allocated research dietitian. This hybrid approach was viewed as beneficial, with face-to-face appointments viewed necessary to help build trusted relationships with the research team, and telephone or online appointments helpful where flexibility was required. Appointment timing during school hours was preferable and considering school holiday dates in research design was deemed likely to improve adherence and reduce attrition. Provision of childcare or reimbursement for childcare was viewed positively amongst the contributory group as a facilitator to engagement.

Information provision was raised by many contributors as a problem for three reasons:

Priority 3: Mental load

Contributors described that women feel an overriding responsibility to others, both to their unborn baby and the wider family, which often means that women’s personal needs are not prioritised. This was felt likely to have reduced willingness to take part in the research.

Focus area 3.1: Competing priorities

There was a general acceptance amongst all contributors that the South Asian woman’s role is childcare, household responsibilities, and looking after others. This was deemed a greater priority than women’s personal needs, including their own health needs. This was felt to leave little time for participation in additional research activity.

Contributors suggested that in South Asian culture there is often an expectation that meals are cooked from scratch, usually tailored to the wishes of other family members. Providing dietary alternatives which meant one meal could be cooked for the whole family with minimal adaptations to make them suitable for the woman with GDM was advised to increase adherence. Food-based healthy eating plans with self-selected food choices were viewed favourably. Calorie controlled ready meals or total diet replacement formula shakes were not deemed an acceptable alternative unless they were used as a last resort for women who were too exhausted to cook or unable to follow dietary plans. Daily or weekly meal plans which reduced the mental burden of meal preparation were suggested as a helpful means of improving uptake and adherence to the recommended diets.

Focus area 3.2: Emotional wellbeing

Contributors frequently raised the importance of emotional wellbeing amongst pregnant women. They noted that if women’s mental health is not supported their motivation for self-care is likely to be low, and consequently it is unlikely that they would take on the added burden of the research activity.

Women only support groups were viewed positively, as sharing experiences and meeting other women was viewed as emotionally empowering and motivating.

There was a strong recognition of the link between emotional state and food intake, and the need to support emotional wellbeing to reduce the likelihood of turning to food as comfort. Ensuring that wellbeing is supported was suggested as a key factor in improving adherence to dietary interventions.

Contributors also raised a sense of research fatigue amongst many South Asian people. They suggested that despite acknowledging the importance of participation in research, many were frustrated that research activities often did not translate to tangible changes in healthcare services for marginalised communities, and was likely to result in progressive disengagement from research activity.

Focus area 3.3: Family influence

The significance of how friends and family may perceive antenatal health behaviours was raised as a concern, with some contributors recognising that intergenerational pregnancy beliefs may be outdated yet may be difficult to challenge due to traditionally accepted familial hierarchical structures. Contributors described a cultural acceptance that pregnant women should ‘eat for two’, and that weight gain is viewed as a positive sign in pregnancy regardless of a woman’s preconception weight. Contributors noted that many older generations may view dieting and physical activity in pregnancy negatively, therefore leaving women in a predicament between satisfying sociocultural norms and family pressures with their own health beliefs and needs. This was felt likely to result in reduced uptake to, and withdrawal from, our dietary intervention. Contributors recognised that diabetes may be viewed as an accepted part of life amongst the South Asian community, with many viewing it as an inevitability rather than something which could be affected by health behaviour change.

A ‘whole family approach’ was seen as very attractive with contributors commenting on the potential intergenerational health benefits as a motivating factor for engagement. Many suggested that leaflets for friends and family could improve family support and understanding thereby increasing health behaviour motivation and improving adherence to the intervention.

Strengths and limitations

Limitations of this work include that the researcher was White British and therefore may have been seen as an ‘outsider’, limiting trust and potentially the contributors’ willingness to be completely open. The PPIE group was relatively small, meaning that other potentially relevant themes to the South Asian community may not have been identified.

Strengths included that the majority of the contributory group were South Asian women with experience of pregnancy, overweight, obesity, and/or gestational diabetes.

Recommendations for future research

Future research activities must focus on inclusivity, particularly in ensuring simplicity of language in patient materials, practical accessibility including childcare provision, and translation of materials and use of interpreters.

Pictorial representations of meals and snacks with listed benefits for mothers and babies are likely to improve adherence to dietary interventions, particularly those which offer alternatives to common cravings.

The mental health and emotional wellbeing of women must be prioritised. There is much published in the literature regarding higher rates of emotional distress and mental health problems in minoritised ethnic groups in the UK, particularly amongst the South Asian community.¹⁷ This must be considered carefully and better supported in both healthcare and research design and delivery, particularly given the strong interplay between emotional wellbeing and health behaviours.¹⁸

Research bodies as a whole need to work on building trusted relationships with minoritised communities to ensure voices from those with lived experience are amplified, for example through partnerships with representative third sector organisations. Research teams, ethics committees and study sponsors must work collaboratively to reduce the burden of overwhelming information for potential study participants.

Cultural differences between groups must be acknowledged and appreciated to ensure interventions are appropriate and acceptable. A ‘whole family’ approach to dietary and health behaviour interventions in the South Asian community is likely to be most successful, as are simple interventions which offer health and wellbeing benefits without increasing a woman’s mental load.

Research projects must focus on applied outcomes which deliver tangible benefits for the communities that need them most. They should also include robust dissemination strategies to ensure the resulting impact is clearly demonstrated, to avoid PPIE fatigue.