Understanding lived experiences through social theories

It is important to recognise these sociocultural differences and lived experiences that shape the disease progression and access to health services for addressing health disparities. Understanding lived experiences requires a holistic person-centric approach that considers the broader context of their social, economic and environmental realities^{(Reference Richards, Bowden and Gee45)}. Such an approach is essential to uncover the complex interplay of factors such as race, gender, ethnicity, socio-economic status and political context that shape human experiences and outcomes. In this section, we aim to explore how various social theories can inform a deeper understanding of lived experiences and support the application of a person-centric lens within the research process. Interventions for migrant women are often initiated for reasons other than the voiced needs of the populations themselves. It may have started with an organisational strategic direction, a grant opportunity or other reasons external to the group^{(Reference Olcoń, Rambaldini-Gooding and Degeling46)}. This often results in a top-down approach with tools and perspectives describing the problem from the organisation’s or programme’s perspective. Many frameworks and toolkits on programme development, implementation and evaluation are of this nature^{(Reference Glasgow, Vogt and Boles47,Reference Damschroder, Aron and Keith48)} . Whilst these have pragmatic value in programme development, it is important to be aware of the limitations of such approaches in understanding the needs of end-users as individuals^{(Reference Sturmberg and Njoroge49)}. Premature application of these approaches without fully understanding the lived experiences could widen the health gap, given that any health interventions are likely to benefit those who need it least in any group, according to Hart’s Inverse Care Law^{(Reference Tudor Hart50)}. The journey should only be embarked upon with a clear intent and ongoing commitment to community partnership to understand the complex and evolving problem of culturally-driven disparities through a person-centred lens^{(Reference Asnaani and Hofmann51)}.

Social theories can help us understand the lived experiences of individuals. Compared with implementation theories, which take programme-centred perspectives, these social theories guide us to empathise with individuals through person-centred perspectives. For example, Maslow’s hierarchy of needs outlines the order of needs within a person, ranging from basic needs of shelter to higher-order needs of self-actualisation^{(Reference Maslow52)}. The imagination of a healthier self, such as that advocated by lifestyle interventions, belongs to a higher-order need. Interventions with this goal will only be effective if the target population’s needs are met for all other categories, such as food, shelter, employment, sense of belonging, respect and freedom. This may have important implications when working with refugees or migrants, in which issues such as trauma, legal status, access to services, separation from family members or discrimination are the individual’s priority^{(Reference Bempong, Sheath and Seybold53)}. Social services and community support in meeting these needs are essential for the success of lifestyle intervention in these contexts. Critical race theory posits that the experience of race and racism is socially constructed^{(Reference Rollock and Dixson54)}. The theory describes progress as naming and challenging systems that subjugate populations from non-Western backgrounds. This has important implications given that much of the knowledge base in health, including in nutrition, particularly in regions with Western influences, is still in the process of moving on from the legacy of White supremacy and colonialism^{(Reference Cohen-Fournier, Brass and Kirmayer55,Reference Alang, Hardeman and Karbeah56)} . Addressing the cultural exclusivity of health services and resources for certain population groups is needed where such gaps are identified. Feminist theory provides the framework to understand women as a population group experiencing ongoing social disadvantage^{(Reference Durville57)}. While this applies to all women, this is particularly pertinent in cultural groups where religious or cultural norms may affect women’s engagement with health services^{(Reference Mochache, Wanje and Nyagah58)}. Women of migrant backgrounds also experience intersectionality, defined as the effect of multiple social dimensions working in synergy to undermine their rights and standing in society^{(Reference Crenshaw59)}. Intersectionality could improve the understanding of the patterns and causes of inequality by acknowledging that more than one axis of discrimination may be at play^{(Reference Holman, Salway and Bell60)}. Although none of these theories on their own may fully represent the lived experiences, judicious use of these theories could provide the vocabulary and framework towards a deeper understanding of the complex issues faced by migrant women experiencing social disadvantage and thus guide the development of appropriate approaches to reduce cardiometabolic risks for these groups.

An equity-centric research approach is essential for addressing inequity in T2DM^{(Reference Walker, Graham and Maple-Brown62)}. Such equity-focused research enables meaningful community engagement, fosters trust and support in the co-designing of solutions aimed at improving the identified barriers and thus, improving uptake of both preventive and disease-management health services^{(Reference Walker, Graham and Maple-Brown62)}. However, designing equity-centric research requires specific skills and methodology to ensure that the research is well-informed, inclusive and co-developed with the underserved communities. In this section, we present a toolkit from our CHIRP research programme to highlight the process and methods for co-designing lifestyle behaviour change interventions among postpartum women^{(Reference Lim61)} (Fig. 1). In this toolkit, we present lessons learnt, along with curated steps and methodologies across the research continuum, to support systematic development and implementation of lifestyle interventions for the prevention and management of T2DM.

Step 1: Uncover underserved populations. In women with a history of GDM, lifestyle interventions on average result in 24% to 43% T2DM risk reduction if started within three years postpartum^{(Reference Retnakaran, Viana and Kramer63,Reference Li, Yang and Cui64)} . However, social determinants of health have been observed to influence the success of lifestyle programmes, including diabetes prevention programmes^{(Reference Devaraj, Napoleone and Miller65,Reference Rautio, Jokelainen and Saaristo66)} . For example, the achievement of weight or physical activity goals in a diabetes prevention programme varied significantly by ethnicity and income^{(Reference Devaraj, Napoleone and Miller67)}. If these socially driven health inequities remain unaddressed in prevention programmes, these interventions could contribute to the increasing disparities in GDM and T2DM between population groups and reinforce the pattern of diabetes prevalence along the social gradient^{(Reference Agarwal, Wade and Mbanya8)}. An equity audit is important to identify the underserved populations in a lifestyle intervention^{(Reference van Daalen, Davey and Norman68)}. Social determinants frameworks, such as the PROGRESS-Plus, can be used to comprehensively outline the various dimensions of social disadvantages to be investigated^{(Reference Karran, Cashin and Barker69)}. PROGRESS-Plus includes Place of residence (P), Race (R), Occupation (O), Gender (G), Religion (R), Education (E), Socio-economic status (S), Social Capital (S) and Others (Plus) that are relevant to the context such as age and disability^{(Reference Karran, Cashin and Barker69)}. Programme outcomes that can be audited for inequities include process outcomes (e.g. enrolment, attendance, completion), health outcomes (e.g., lipids, blood glucose, diabetes incidence, body weight, BMI, waist circumference), behavioural outcomes (e.g. physical activity, fat intake, fibre intake) or other patient-reported outcomes (e.g. anxiety, depression, quality of life)^{(Reference Glasgow, Vogt and Boles47,Reference van Daalen, Davey and Norman68)} . Differences between subgroups could be determined through appropriate statistical tests, such as multivariable logistic regression models, to identify key characteristics of underserved populations and potential interactions between social dimensions^{(Reference Lavikainen, Mattila and Absetz70)}.

Step 2: Identifying and forming partnerships and trust. Addressing health inequity solutions requires partnership between key actors, including researchers, service providers, community leaders and end-users^{(Reference Eslava-Schmalbach, Garzón-Orjuela and Elias71)}. To ensure solutions are built upon lived experiences, consumer representatives from each priority group are needed to steer programme development^{(Reference Ng, Reeder and Jones72)}. The advisory group could guide the selection of the questionnaire or data collection tools, the intervention design, recruitment pathways, implementation strategies and dissemination pathways. In addition to the consumers, the voices and perspectives of relevant health professionals or organisations that may advocate for the population group are also important to consider as key stakeholders^{(Reference Lim, Makama and Ioannou73)}. A stakeholder and health service mapping activity might be necessary to identify these key actors if working in an unfamiliar context^{(Reference Pirsch, Denise and Mabel74)}. This process typically identifies research team members of the same cultural background as the priority population, consumer advocates or local champions, health professionals that serve the population, relevant community services, social media or other communication channels for the group. Where possible, researchers and service providers from the community should be given leadership roles in the programme^{(Reference Lim, Makama and Ioannou73)}. Voices of the community could be elevated and amplified through consultation and partnership^{(Reference Bergmeier, Vandall-Walker and Skrybant75)}. In consumer and community involvement, value conflicts may arise between the researchers and community^{(Reference Tallon, Chard and Dieppe76,Reference Ryan, Wenke and Carlini77)} . Processes and outputs that are valuable to the community may not always produce innovative, scientifically rigorous outputs. However, these seemingly ‘wasteful’ partnership efforts would, in time, prove to be useful in developing interventions that would address inequities while preventing truly wasteful research investment that does not benefit the socially disadvantaged groups, thereby not addressing the main cause of the rise in cardiometabolic diseases^{(Reference Chalmers and Glasziou78)}.

Step 3: Understanding risk factors, enablers and barriers. The causes for social disparities in diabetes are multidimensional^{(Reference Agarwal, Wade and Mbanya8,Reference Walker, Graham and Maple-Brown62)} . Data can be drawn from multidisciplinary sources, including epidemiological studies, health service audits or mixed methods studies^{(Reference Takele, Dalli and Lim34,Reference Chen, Makama and Skouteris79)} . These existing studies may help unpack the role of social determinants on diabetes in the underserved population identified in Step 2.

Further community engagement activities may be needed to fill any knowledge gaps specific to the target population^{(Reference Chen, Makama and Skouteris79)}. Qualitative and ethnographic approaches such as interviews, focus groups and community observations are useful in understanding the contextual social factors contributing to the inequities^{(Reference Chen, Makama and Skouteris79,Reference Neven, Lake and Williams80)} . A variety of frameworks could be used as a basis of inquiry, depending on the key research question (Table 1). For example, in translating an evidence-based lifestyle intervention from one population to another, the acceptability framework is one example that may provide insights into the potential factors influencing the uptake of the intervention in the population^{(Reference Sekhon, Cartwright and Francis81)}. This framework includes questions on burden (Is the programme too burdensome?), ethical consequences (Is the programme not aligned with personal or community values and beliefs?), experience (Were there past experiences that prevented engagement with the programme?), affective attitude (What emotions do they feel about the programme?), opportunity costs (What does it cost them to be part of the programme?) and intention (Do they wish to be part of the programme if all things are possible?). Additional questions could also be added to any chosen framework to assist with the practical aspects of cultural adaptations of lifestyle interventions. This step may produce several hypotheses on social processes that explain lifestyle behaviour in the group. These underlying assumptions frame the solutions in the next phase.

Table 1.

Examples of tools, theories and frameworks for consumer engagement activities

Fig. 1.

The CHIRP toolkit: enabling individual behaviour change through restructuring of social environment. (a) Equity audit to uncover underserved groups. (b) Forming partnerships with consumers and stakeholders. (c) Understand risk factors, enablers and barriers. (d) Co-development of strategies, implementation and evaluation plans to restructure the social environment.

Step 4: Co-develop the solution. Once the problem is fully described in Step 3, the stakeholder and consumer group could co-develop the solutions^{(Reference Foundation86)}. The challenge at this stage is to remain faithful to the consumer voices while generating scientifically rigorous and efficacious solutions based on evidence within the financial constraints of the programme budget. To assist with the brainstorming process, the intervention mapping approach could be used to generate solutions (Table 1)^{(Reference Eldredge, Markham and Ruiter82)}. The solutions could be further guided and underpinned by implementation or behaviour change frameworks. For example, the Behaviour Change Wheel is an example of an implementation framework that was developed based on a summary of 33 behaviour change theories with 128 theoretical constructs^{(Reference Michie, Atkins and West83)}. This framework posits that behaviour ensues if capability, opportunity and motivation are present. Once the identified problems are mapped onto the Behaviour Change Wheel, corresponding types of behaviour change strategies in each domain and subdomains can be selected^{(Reference Michie, Van Stralen and West87)}. These can guide further implementation planning^{(Reference Lim, Lang and Savaglio88)}. To ensure sustained impact for the community, this stage should not involve only the consumers but also implementation partners that will likely adopt this intervention at scale. This may be government departments, non-government organisations, health services or others. Integrating the intervention into routine services by the major health services that provide universal access is key to addressing inequities^{(Reference Lim, Makama and Ioannou73)}.

Given the central role of social determinants in diabetes^{(Reference Agarwal, Wade and Mbanya8)}, the solutions generated will likely span health and social sectors. Social prescribing could be one of the mechanisms to integrate medical and social services, as it involves the prescription of clinical and non-clinical services to meet the social, emotional and practical needs of individuals^{(Reference Thomson, Camic and Chatterjee89)}. The focus of social and emotional needs in social prescribing also aligns with the consumers’ top-ranked priority in T2DM prevention after GDM, which is stress and mental well-being^{(Reference Lim, Makama and Ioannou73)}. Social prescribing involves identifying and recommending community services that enable a healthy lifestyle, such as walking groups or cooking classes^{(Reference Organisation90)}. It is one of the health system strategies to promote the engagement of these community resources to support healthy lifestyle behaviours that are aligned with the goals of a diabetes prevention programme.

Step 5: Implementing and evaluating the solutions. The stakeholder group should also co-develop the implementation and evaluation plans^{(Reference Glasgow, Vogt and Boles47,Reference Damschroder, Aron and Keith48,Reference Foundation86)} . This step aims to answer the following questions: (a) How are we going to reach the target audience? (b) What resources are required, and who is going to fund them? (c) Does the identified strategy address the barriers identified in Step 3? (d) How and who will monitor the outcome?^{(Reference Damschroder, Aron and Keith48)}

In addition to the detailed logistical planning for the delivery of the strategy, it is also useful for the group to discuss and envision, from their respective perspectives, the key metrics of success, scale and sustainability. The definition and measurement of each metric should be determined by the various stakeholders, as it is likely that the different values and performance metrics held by different individuals and organisations may influence the nature and description of these milestones. The implementation and evaluation plan is to be revisited iteratively with the stakeholder group to incorporate lessons learnt^{(Reference Oldenburg, Absetz and Dunbar91)}.

The implementation and evaluation plan should align with the hypotheses generated in Step 1 on the social processes that lead to lifestyle behaviours. It should involve restructuring the social environment for the individual, thereby increasing the plausibility of the lifestyle behaviours. Social influences could shape lifestyle behaviours through a vast range of behaviour change strategies, such as social support, demonstration of behaviour, feedback on behaviour, social comparison, social consequences, framing/reframing, social reward, information about others’ approval, identification as a role model and many others^{(Reference Carey, Connell and Johnston92)}. This involves processes that connect the individual with others in the community. Such initiatives increase the success of individual behaviour change by promoting social cohesion and decreasing marginalisation^{(Reference Organisation93)}. The evaluation plan may also include a cost-effectiveness analysis. Studies have shown that lifestyle interventions for diabetes prevention are cost-effective and cost-saving in at-risk populations^{(Reference Zhou, Siegel and Ng94,Reference Kuo, Ye and Wang95)} .