Social capital in accessing ncd prevention and management
Structural, economic and sociocultural forces were integral in influencing migrants’ and refugees’ NCD prevention and management. Social capital in the forms of emotional, informational, logistic and linguistic supports thus became essential in subverting structural deterrents to seeking healthcare services. Interactions between social and individual roles were mediated by social capital, described under eight themes related to postmigration adjustment, family, transnational ties, friends, community, bridging capital and linking capital. Figure 2 presents the thematic scheme.
Contextual factors, conversion of social capital and its’ interacting factors. NCDs, non-communicable diseases.
Postmigration: adjustment to a new system with diminished social networks
Migrants and refugees had difficulty adapting to host countries. Their full participation in society was obstructed by legal status, stigmatisation and language barriers. This lack of civic engagement further marginalised them, limiting health choices.
My elderly mother used to walk to the mosque in the early morning… a car chased her and her friend as they walked… It was a man in a pick-up truck who was insulting them as they walked home. They refused to walk there again after that incident. (Somali refugee in the US, article #15)
The complex and prolonged process of adjustments to survive in host countries caused overwhelming stress, and was perceived as a root cause of physical and mental illnesses.
[I]t’s a stressful, stressful life and you forget about many things. You forget to live you’re working so hard. You forget about social life, forget about yourself. (Mexican immigrant in the US, Article #24)
Social insecurity and economic instability further hindered NCD prevention and management. Livelihood stressors, combined with shrinking social networks postmigration, positioned work and health as competing priorities. Working multiple jobs or long hours was common for household survival, subsequently undermining NCD prevention and care.
We all know that exercise leads to good health. Then again, people cannot keep it up. We won’t have time, looking for food, jobs and paychecks. (Somali refugee in the US, article #15)
Family: core of social capital and double-edged sword
Family members appeared to be the primary source of social capital in NCD prevention and treatment. Those living alone in host countries lacked the protection extended by families. They often felt isolated and did not receive adequate support for disease management. Those living with families in host countries, received emotional support and bridging to healthcare systems. For example, educated family members read and translated health information, provided transportation, assisted with system navigation, and communicated with health workers for those not fluent in host country languages.
Changes in household compositions and community dynamics postmigration required shifting strategies. When community networks for health were limited, NCD management depended on negotiations within households. These included tasks distribution to maximise financial and human capital with factors such as family tradition, cultural values, meal habits and gender roles highlighted in negotiations. Some families were receptive to required dietary changes. For others, family traditions, cultural values, and habits contravened lifestyle recommendations and reduced adherence.
[W]hen I meet relatives, they invite me [to eat] all the time, and I cannot say no…; this is considered impolite not to eat the food when offered; It is hard to say no to good food that you get served; My family thinks I’m too small, but I’m overweight! They offer me different dishes and meals the whole time. (Arab migrant in Sweden, Article #20)
Differences were also observed between genders. Men tended to obtain more spousal support for healthy eating, while women’s dietary behaviours were reliant on family’s acceptance.
A challenge for me has been to convince my husband to use less oil and convince my children to eat less fried foods and sweets. (Latino migrant in the US, Article #10)
Migrant women who worked were exhausted by household chores and described physical exhaustion as compromising their abilities to adopt preventive health practices.
Transnational ties: costs of tie maintenance
How kinship was managed postmigration affected NCD prevention and management. Financial remittances were usually necessary in exchange for social capital extended by families in countries of origin. The emotional comfort received from their family affirmed their identities as responsible children, spouses and parents. To fulfil familial responsibilities, migrants focused on converting limited available resources (ie, time, mental space, physical capacities) into financial capital, deprioritising NCD preventive practices.
Taking care of the children in Haiti, I think it does not make hypertension well. Because most of the times, you do not have the economy even for your own self if you were to get sick while you do not have insurance. (Haitian migrant in the US, Article #23)
For migrants with NCDs, the struggle to provide for their families became a motivation to manage their diseases as health was prerequisite to maximising income through labour.
If I were to tell you the amount of money I send to Haiti, I could not talk about that, girl. I can tell you everything I make where it goes is Haiti because all my soul is in Haiti. [I have] six children in Haiti. If I were to let hypertension kill me, who would take care of them? So I am obligated to take my medications. (Haitian migrant in the US, Article #23)
Similarly, refugees who were uprooted from their home countries were apprehensive about relatives’ health and safety across borders. These worries overwhelmed their daily life and intensified their need to maintain transnational ties for emotional comfort and bonding. Consequentially, NCD preventive practices and management were minimised.
For diabetes patients, diet and food is not important. The mood and mentality play [a] big role. For instance, [if] I receive a call from Damascus, I feel sad for one month. I am the only one who left the prison. […] Diabetes cannot be stable as long as my family is living like that. (Syrian refugee in Jordan, Article #14).
Friends: sources of informational, emotional and logistical support
Together with family, close friends within the same social group were significant in extending emotional, informational and sometimes logistical support to migrants and refugees. Friend ties were especially crucial for those separated from family. However, migrants and refugees were cautious about friends’ support in illness management. Disclosure of illness, especially those perceived as stigmatised (eg, cervical cancer), could negatively affect friendships.
Illness should be confidential; you are not supposed to talk about your illness to just anybody. Once you talk about your illness, you get a bad feeling because the person you are telling pulls away from you. (Haitian migrant in the US, article #11)
On acceptance of disclosure, participants often benefitted from friends’ emotional and practical support. However, disclosure was still perceived as risk-taking.
Communities: distributed health literacy versus perceived social control
Community networks, including religious, cultural and grassroots support groups, provided a sense of security and enabled reciprocal exchanges of information and other practical support that enhanced NCD management. Community attachment fostered social cohesion and facilitated diffusion of health information. Network participants shared various health literacy skills to enable health promotion, while providing a platform for collective efficacy and role modelling.
The second camel follows the steps of the first camel, you are what your friend is, and if you want to know somebody, look at his friends. (Somali refugees in the U.S., Article #06)
However, potential harms of communal bonds were noted such as facilitating risk behaviours.
What? Are you too proud to drink with us? […] It is hard to avoid them, I must pass through the living room to go to my room, and they are there, playing music and drinking (Guatemalan migrant in the US, article #26)
Transnationalism played an instrumental role in the search for recognition of a shared identity, defined as a set of culturally mandated norms and expectations of group members. The perceived need to observe intersubjective community norms in the host countries exerted ongoing social control.
There is no place just for women, and that is the only barrier I can see. (Somali refugee in the US, article #5)
Cultural dissonance was apparent in some communities in which, for example, joining western facilities such as gyms and following modern norms such as wearing sports attire were regarded as inappropriate.
If you give an old (Somali man) a pair of shorts and Somali women see him running, Somali women will say he is crazy. (Somali refugee in the US, article #16)
Observing community norms in host countries often conflicted with effective NCD preventive practices and management, inhibiting lifestyle modification. Some health behaviours such as losing weight through exercising were seen as ‘an act of vanity’44 or betrayal of cherished beliefs.
Bridging capital: getting ahead with brokers of healthcare access
The structural, financial and language barriers to healthcare access could be narrowed by ‘bridges’ within communities. Difficulties in healthcare navigation were alleviated through community health workers, peer advocates or settlement workers. These agents provided emotional, informational, linguistic and logistical support bridging communities with healthcare systems. They were often well equipped with necessary skills and information to assist migrants and refugees beyond what closer networks could provide. These broker networks increased health literacy and facilitated adaptation in host countries.
If we didn’t have someone who spoke our language, I can’t imagine how difficult life would have been. (Somali refugee in the US, article #22)
Linking capital: parallel health services in contexts of social exclusion
Humanitarian organisations were important resources in linking migrants and refugees to adequate NCD care. They filled the access gap by providing primary healthcare and referral services, delivering services tailored to participants’ needs which effectively reduced physical barriers and opportunistic costs of visiting a clinic.
At first, they gave us instructions for using the device [blood pressure monitor]. […] They come here every time. Things are good. (Syrian refugee in Jordan, Article #14)
These parallel services were especially crucial in countries with exclusionary national health policy against non-citizens. However, such services were often limited due to lack of funding and infrastructure.
Linking capital: patient-centred care for underserved populations
Relationships with healthcare providers determined the quality of care received and ultimately NCD prevention and management. Healthcare providers, especially physicians, were sources of health information. This was especially essential as mainstream health information often lacked cultural competency for migrants’ and refugees’ specific health and language needs. Trust and respect for physicians became the guide and initiator for NCD management, such as screening, lifestyle modification and treatment adherence.
Whenever my doctor schedules an appointment for me, I am always obligated to go and there is never any problem or difficulties with that. I respect doctors and their opinion. First there is a God, and then there is a doctor. (Bosnian refugee in the US, Article #22)
General practitioners often served as gateways to comprehensive care. Given migrants’ and refugees’ social position, more efforts were required to access this first point of contact, and failure hindered their access to adequate health services.
However, relationships with healthcare providers were highly contextual and inconsistent across studies, and shaped by provider virtues. High trust was placed on providers who exhibited professional conduct such as empathy, compassion and confidentiality. Other providers’ nonchalant approach left migrants and refugees feeling unsupported. Those who experienced traumatising encounters in their countries of origin experienced intensified fear and mistrust in establishments, including healthcare providers. Scepticism about prescriptions and physician recommendations was common among those who believed in divine will, which affected their healthcare usage.
Some people do everything right, they eat right, they exercise, and cancer still comes on them, so you cannot tell me you have control. Even when you take care of the first cancer, it can go back. So, the control is God. (Haitian migrant in the US, Article #11)
Discordance between migrants’ and refugees’ needs and provider expectations also caused distress in NCD management. For example, lifestyle prescriptions that lacked cultural sensitivity and considerations of individual circumstances often failed to ensure patient engagement.
Language differences in healthcare settings needed to be managed adequately to avoid eroding trust. Interpretation services could empower participants to exercise patient rights and improve health literacy, but experiences with interpreters were not always positive. This sometimes led to more frustration when expectations were mismatched.
When we go to the hospital, we are not able to tell our problems openly or clearly. They will give us an interpreter by phone because we are not in a condition to speak. But the interpreter tells us to speak louder… Sometimes the interpreter themselves won’t understand what we are saying because we are not in the condition to speak due to pain and keeps asking. (Bhutanese refugee in the US, article #12)
Although interpretation services were negatively perceived in some settings, they often enabled more effective communication among migrants and refugees with healthcare providers. Conversing in native languages through interpreters empowered them to discuss NCD treatment plans with providers, which ultimately improved treatment outcomes.
If GPs give the information, it would be good. They will listen, but if there is no interpreter, they cannot get a complete picture of any health problem and motivate them [women] to do these screening tests. (Bhutanese refugee in Australia, article #21).