The search identified 3165 unique articles, of which 21 were included for synthesis, depicted in a PRISMA diagram in Figure 1, (see Supplementary Table S3 for characteristics of included studies).
Study characteristics
Supplementary Table S3 provides the characteristics of the 21 included studies. Studies were from: India (n = 7),35–45 Nepal (n = 2),46,47 Pakistan (n = 2),48,49 Bangladesh (n = 1),50 UK (n = 4),51–54 Canada (n = 1),55 US (n = 1),56 Australia (n = 1),57 Norway (n = 1)58 and Qatar (n = 1).59 Eleven studies included people with diabetes,35–41,45,48–50,52,57,59 three with diabetes in pregnancy,45,51,58 one with diabetes and heart disease,43,44 and six studies were about people with coronary heart disease.42,47,53–56
Four of the articles from India with people with diabetes were based on the same initial cohort of patients and have been considered as one study.35–38 Two of the articles from India with people with diabetes and coronary heart disease were based on the same initial cohort of patients and have been considered as one study.43,44 One study included 30 participants of four ethnicities (including non-SA) and did not state how many participants were of each ethnicity,57 and one study had participants with four different diseases and did not state how many had diabetes and heart disease,43,44 leading to an approximation of 580–606 participants of South Asian origin included, 575–601 participants with diabetes, 93 participants with coronary heart disease and 2–39 participants with diabetes and heart disease.
Study methods used were semi-structured interviews (n = 6),46,48,52–54,56 in-depth interviews (n = 7),39,43–45,47,49,50,57 focus groups and in-depth interviews (n = 3),40,41,58 focus groups (n = 2),42,59 semi-structured interviews and case studies (n = 1),35–38 group story-sharing sessions and individual biographical life narrative interviews (n = 1),51 and narrative interviews (n = 1).55
Ages ranged from 24 to 88 years. Although some described ethnicity broadly as SA, for the majority of studies that gave more specific details, Indian participants were of the largest numbers, with participants from Bangladesh, Nepal, Pakistan, and Sri Lanka also included.
Understanding emotional distress
Two main themes emerged regarding understanding of emotional distress: using the terminology of tension to describe emotional distress, and causation and complexity with emotional and physical illness.
Using the terminology of tension to describe emotional distress (high confidence — 14 studies)
Terminology used regarding emotional distress was noticeable by a lack of use of medical terminology such as depression, anxiety, or distress. In one study the authors described:
‘People rarely described these emotional crises as “depression.” They did not necessarily associate their sadness, sense of hopelessness or despondency with depressive illness.’ 57
Not only were episodes of emotional distress not considered as mental health episodes, they were not associated with a mental health diagnosis by the South Asian participants. Emotional distress was instead defined primarily as tension:
‘I got it [diabetes] from tension after my husband’s death.’ 39
Other terminology used to describe emotional distress included specific emotions, such as stress35 and anger.42
Causation and complexity with emotional and physical illness (high confidence — 18 studies)
SAs with LTCs described a complex and interrelated relationship between emotional distress and physical illness. Emotional distress was described as causing physical illness, from both acute and chronic stress. For example, an Indian participant stated:
‘I got diabetes because of tension only. It’s not because of food habits or lifestyle.’ 39
Another participant ascribed his heart attack to his perpetual psychological inclination towards anger.54
As well as being a causative agent of physical illness, emotional distress was further felt to cause a deterioration in physical illness, as a Bangladeshi participant who had experienced a heart attack stated that:
‘Worry make you worst don’t it.’ 53
Physical illness was felt to cause emotional distress. One study described how:
‘Participants also considered that diabetes “caused” stress in relation to controlling the condition and preventing complications, and in response to doctors’ comments.’ 57
Numerous elements were thought to lead to physical illness causing emotional distress. This included regret and not making lifestyle changes earlier,56 symptoms of the LTC such as physical restrictions caused by shortness of breath,47 stress of making lifestyle changes,41 anxiety around tests such as checking blood sugar,36 and taking medication, in particular insulin.59 For women with diabetes in pregnancy, distress stemmed from the stress of health consequences for the participant, their baby, and managing a busy schedule of multiple clinic appointments and regular testing .45,51,58
Participants reported that positive emotional health reduced physical illness.52 When physical health was good, this also had a positive impact on emotional wellbeing:
‘When my blood sugar level is normal I become very happy . ’ 48
Experience of emotional distress
Four main themes emerged regarding experiences of emotional distress: multiple forms of inequality, distress at diagnosis of the LTC, cultural challenges and distress, and sex differences.
Multiple forms of inequality (high confidence — 10 studies)
SAs described multiple forms of inequality as a source of distress throughout studies from different contexts worldwide, as well as being a direct cause of physical illness. Poverty was described throughout all studies internationally:
‘Poverty causes illness and illness causes poverty, it is a cycle in this way … in my experience chhinta [angst/anxiety] and poverty gave me the gift of sugar.’ 46
The extent of suffering from poverty was so severe that a female Nepalese participant described attempting suicide because of severe poverty and not being able to manage her diabetes .46
A combination of being SA, having a LTC, poverty, and COVID-19 lead to feelings of helplessness and emotional distress from loss of income:
‘The income is stopped so this is natural worry. That’s the tension which I have on every 3rd or 4th day.’ 44
Participants were anxious about attending hospital care because of their higher risk of mortality with COVID-19 given their LTC. A participant with diabetes described:
‘Everyone scares us saying that it is difficult for the diabetic. So I didn’t want that to happen. Because they had the spread the awareness that diabetics, old aged people have a problem during this corona. And yes I was scared.’ 44
Distress at diagnosis of the LTC (high confidence — 10 studies)
Participants felt a wide range of emotions related to the diagnosis of a LTC; this was felt to be a life-defining moment. These included being ‘scared’,45 ‘shocked’,52 ‘fear’,47 and ‘a disaster’.59 Some participants described a negative change in aspects of their personality after diagnosis, such as lacking confidence and motivation, which was more profound in participants with coronary heart disease:
‘Yes, there is one change that I have noticed, if there emerges any small or bigger issue at home or the workplace, I get anxious.’ 42
Emotional distress relating to a LTC tended to reduce over time with participants ‘getting used to’ 36 their illness.
Cultural challenges and distress (high confidence — 14 studies)
Culture was found to play an important role in experience of emotional distress . One participant described how it was part of Indian culture to have high levels of stress:
‘yes in our Indians we take on a lot of tension . ’ 55
Acculturation (the process of adjusting to a new culture) was described in many forms; one example of this was from people of SA origin who were in a higher socioeconomic demographic in their country of origin who had to adapt to changing roles and more manual work in their country of destination.55
Within SA culture, there was a greater level of stigma felt for people with LTCs, such as gestational diabetes being viewed as occurring as a result of lack of self-discipline,58 and discrimination felt by participants with coronary artery disease42 and if they contracted COVID-19.44 One participant described that:
‘Near my home in my area they speak very bad about diabetes people.’ 41
Cultural differences were identified. Indian men were found to normalise symptoms of cardiac events, for example, stating after a heart attack, ‘I feel that nothing happened to me’ ;53 whereas Bangladeshi participants experienced more anxiety, low mood, less positivity, and a greater fear of lifting heavy objects.52
Sex differences (moderate confidence — eight studies)
Differences were found between the experience of male and female people of SA origin with LTCs. Female participants tended to have stronger emotional reactions, in particular to diagnosis, and related negative feelings to experiences of family members. One female participant stated:
‘Yes it was shock, because I saw my brother [who had diabetes] , he was really bad.’ 52
Men perceived having less control of their health, describing an external locus of control in different manners59 and greater emotional distress with regards to their employment:
‘Obviously as a man, obviously if you have family, obviously the first thing you think about is money … I don’t want for someone to support me. I feel humiliated.’ 53
Management of emotional distress
Four main themes emerged regarding management of emotional distress: self-management, support from family and friends, support from faith, and inadequate clinical support.
Self-management (high confidence — 13 studies)
A key area described before seeking help for emotional distress was self-management. Self-management began with having a positive mindset. One participant described the power of positive thinking, stating:
‘It’s your thinking that makes your body feel sick. It’s all in the mind.’ 35
Some participants made proactive lifestyle changes after coping with emotional distress from their LTC, such as going from multiple jobs to one job after a coronary event.56
Other lifestyle modifications included stress-reduction techniques, as well as exercise, yoga to reduce stress, prayer, voluntary work, listening to music, and reducing smoking and alcohol intake.47
Support from family and friends (moderate confidence — eight studies)
Family and friends were described as great sources of support during distress, in particular children who were active in their parents’ lives:
‘My son lives not far from my house. I see him every day ... When you can count on somebody, even in the back of your mind, you relax.’ 53
One study found the involvement of family and friends the most important mechanism of maintaining emotional wellbeing and physical health.47 Advice from peers was ‘familiar, meaningful, and morally resonant.’ 51
Support from faith (moderate confidence — six studies)
A strong theme across ethnic groups was a faith in a higher being and emotional support from the higher being as well as their spiritual community, be it from the temple or mosque community.55 This was strongest among the Bangladeshi community, as one participant stated:
‘It all depends how much faith you have on the Almighty … people who, they have weak faith they’re more worried ... If you have strong faith that gives you strength in order to endure the situation and overcome it and adjust to it.’ 53
Practically, acts of worship such as ‘Dhikr’ (saying formulas of remembrance of God), were felt to reduce distress:
‘Dhikr of Allah gives relief to hearts and because of this our sugar is under control. Whatever it is, it is from Allah and we have to accept it heartedly. ’ 48
Some participants displayed reticence and frustration with the higher being. One participant struggling with eyesight complications from diabetes described how:
‘Now I feel sad with the thought that Allah is depriving me from many things with time.’ 48
Inadequate clinical support (moderate confidence — seven studies)
Participants of all ethnicities were critical of clinical support, for both their psychological issues and their medical issues, for example:
‘Doctors are not helping us.’ 59
Another participant described how:
‘Doctors never explain why I am feeling down.’ 59
Some participants described clinicians being rude, discriminatory, and uncaring within hospital settings.45,53 Health education advice was felt to be unfamiliar, using medical jargon and devoid of empathy and cultural meaning.51 Conversely, participants from all ethnic backgrounds who had a heart attack stated they would like access to psychological support following the event.53
Participants also described visiting traditional healers for psychological as well as physical problems in SA countries.40
PAG feedback
The results were discussed with the PAG, providing a further layer of credibility, and the PAG agreed with all of the themes. However, the PAG discussed a number of culturally common beliefs that were not found in the findings, such as black magic and envy as causes of emotional distress, and faith leaders as a source of support.
