A qualitative study explored how migrants from sub-Saharan Africa in France who were living with both HIV and type 2 diabetes managed the two conditions. The study found that participants most often managed both conditions in a similar way, more commonly an ‘emotion-based’ strategy such as spirituality to manage the stress of the conditions, rather than ‘problem-solving’ strategies such as lifestyle and diet changes.
In 2021, 48% of all people living with HIV in France were born in sub-Saharan Africa. Migrants are more likely to experience health complications, including late diagnosis, because of social and economic marginalisation and difficulties in the immigration process.
Like HIV, type 2 diabetes is a condition associated with social and economic disparities, and HIV treatment can also contribute to the development of type 2 diabetes. Globally, between 2 and 14% of people living with HIV also have type 2 diabetes. This exploratory qualitative study sought better understand the self-management techniques used by sub-Saharan African migrants living in France with these two conditions.
Dr Soline de Monteynard and colleagues used an inductive approach to interview people attending of the Avicenne University Hospital in Bobigny. The hospital is located in a suburb of Paris in the department of Seine Saint Denis, where nearly 30% of the population is immigrant and which has the highest poverty rate in metropolitan France.
Researchers used electronic health records to identify eligible participants over 18 years old, who were born in sub-Saharan Africa, had been diagnosed with type 2 diabetes after their HIV diagnosis, were on insulin therapy or anti-diabetes drugs, and were fluent in French.
A total of 27 participants were invited to participate in the interviews, which took place over three months in late 2019 / early 2020. Researchers determined that data saturation was complete after 11 interviews, which was confirmed when no new themes emerged during the 12th interview. Of the twelve participants, four people did the interviews at home, while eight elected to do it at the hospital.
Five participants were male, seven were female. The median age was 54, range 40–72. Country of birth included three participants each from the Democratic Republic of Congo, Mali, and Cameroon, and one participant each from Congo-Brazzaville, one from Côte d’Ivoire, and Senegal. The year of arrival in France ranged from 1980-2007.
Diabetes was defined as controlled with any HbA1c below 7%, while HIV was defined as controlled with a viral load below 40 copies / mL for at least six months. Half of the participants had controlled both HIV and diabetes, while five had controlled HIV and uncontrolled diabetes, and one person had controlled neither.
Several themes emerged from the interviews, including representation of the two diseases, self-management techniques, and experiences of care.
Experiences with HIV diagnosis
Participants had vivid memories of their HIV diagnosis, which was largely associated with shock:
“It gave me tension. I was very sick and it threatened me. We were all very affected. It was a shock, I was afraid, I cried, all week my daughter gave me food I didn’t eat. She herself was crying.”
HIV was associated with death:
“Because every day my family cries, they cry, they pray. I thought I had a few days, a few months to live. I even asked the doctor how long I have to live.”
Some participants associated HIV – asymptomatic and invisible—as a disease of the mind or an imaginary disease. In some African cultures, blood represents energy and spirit, so as one participant put it:
“In fact HIV is like the mind, because it’s in the blood.”
The researchers noted that there was a sense of searching for the cause of HIV among all participants, a “why me” or “how did this happen”. The researchers noted that shame was a recurring theme, as some participants associated HIV with immoral behaviour. Others cited transmission from a hairdresser or it being a curse. All participants considered the cause as outside their responsibility.
Diagnosis of diabetes
In contrast, type 2 diabetes did not come as a shock for most participants. They were largely diagnosed by their infectious disease specialist, and participants frequently compared the diagnosis of diabetes with HIV.
“I didn’t react! Good diabetes there, there are a lot of people who have diabetes, it was AIDS that scared me more than diabetes.”
For others, the diagnosis of diabetes re-triggered the trauma of the initial HIV diagnosis. Describing the diagnosis of diabetes as a “stab wound in his life”, one participant did not have enough energy to address the addition of diabetes to the existing HIV diagnosis, leading to depression and a temporary discontinuation of HIV treatment as he processed the second diagnosis.
Most participants viewed diabetes as hereditary, so there was not the same theme of searching for the why with diabetes as there was with HIV:
“I didn’t ask any questions because I saw that it’s hereditary. My father has it, my grandfather has it, so I didn’t give it much thought. I already had a big problem. I trivialized it as I saw that it’s a family thing.”
Participants did associate diabetes with amputation, and it being a disease of the body, compared to HIV as a disease of the spirit.
Having both HIV and diabetes
Some participants made a clear distinction between HIV and diabetes. For them, there was no comparison to HIV because of the shame:
“Even if it’s more serious than HIV it’s not the same. Because HIV is considered a disease of shame. If you tell someone that they are diabetic they don’t mind, but if I tell you that I have HIV, they look at me differently, it changes. It’s not the same.”
For others, there was just a sense of “being sick”, regardless of the specific condition(s):
“All diseases. Because sometimes with blood pressure you get tired, with diabetes you get tired, with HIV you get tired. All illnesses are tiring. I had pain here, he says it’s arthritis. This disease takes hold of you, you say this is what will kill me. All diseases are the same for me.”
Some people considered HIV and diabetes to be equal in severity:
“Both are serious. There is no disease less serious than the other, all diseases are serious, whether it’s cancer, diabetes, HIV, everything.”
While others considered diabetes as the more serious condition because of the unpredictable and uncontrollable consequences:
“Where we are, diabetes is the most serious. Why is that? Because HIV can be controlled, and I am convinced that in a few years’ time there will be a vaccine for it, curative or preventive. But diabetes, once it’s there, it’s settled.”
The researchers were interested in self-management – how the interviewees took care of their health and coped with their conditions.
Participants most often used the same resources to manage both conditions. One self-management technique was “personal” – a need to be strong and rely on oneself, and an acknowledgement that the fight was in one’s head and that they had the responsibility to control these diseases.
Others used their family, living for and through them, as a main strategy. Their family was a resource in terms of easing their burden by sharing their diagnosis.
“Yes, yes, but it takes time. It already took me a long time to accept the first illness, and then on top of that I was told I had a second one. It takes time, but as I’ve always said, my mother lives, I love her very much. It takes time, but maybe I’ll be able to get over it with this.”
Some participants used a spiritual strategy for self-management, citing that God is the only saviour. Across religions, they considered God as the decider of illness, a provider of fate, and a guide giving knowledge to doctors.
Hospital doctors, and medical coping strategies, were the most commonly used resource. Participants had an appreciation for a framework of “rules” to follow:
“All the illnesses I have, I took this. No one can cure me if it’s not the good Lord but I have hope in my doctors even they can’t cure me but I have to respect their rules afterwards we can move on.”
Participants cited trust in medical providers and medication. Medication was viewed as a potential saviour, applied to both HIV and diabetes:
“He told me we found that you have diabetes too. I said, “yes there is a tablet.” I said no worries, I’ll mix it with the others.”
Several participants noted using community and non-governmental organisations for management of HIV. Especially in the first years of their diagnosis, these organisations allowed interviewees to learn about HIV, meet other people, and share their experiences. Having a source of solidarity with others living with HIV was helpful to participants:
“We give you a little coffee in the morning. If noon finds you, we give you food. It was good for me. And the social worker helped me with the papers.”
However these types of organisations were not available or were not mentioned in relation to diabetes.
Barriers to self-management
Barriers to management of these conditions emerged, particularly HIV. One was the need to hide HIV drugs, stigma, and consequences of disclosure. Several participants mentioned losing places to live because of HIV:
“I used to say to God “what am I going to do, what am I going to do?” At that time when you tell someone you are HIV-positive, they would immediately kick you out of their house. They don’t want to mix with you because before we used to say that you shouldn’t use the same spoons, even to wash yourself.”
These types of interactions led to isolation and withdrawal, burdening people’s daily lives. In contrast to HIV, barriers to managing diabetes were specific to the actual condition, particularly the diet:
“Sometimes I don’t have the money to buy vegetables, to eat so I make do with what I can afford so I can eat what I shouldn’t eat. When I do it I know I’m not doing it right but how do I do it?”
Considering these themes, researchers discussed the difference between ‘emotion-based’ resources and ‘problem-solving’ resources. Emotion-based strategies are efforts to manage emotions or stress related to health conditions, such as through spirituality or an attitude of “I can handle this”, and were used more commonly.
‘Problem-solving’ resources focus on the day-to-day aspects of living with and managing a condition, such as medication and changes in lifestyle and diet, and were used less frequently by participants. Medication was viewed favourably by participants; however management techniques outside of medication were not used as commonly and were more likely to be viewed as restrictions or rules. As diabetes cannot be managed by medication alone, it was often harder to control than HIV.
The authors noted that the participants in the study had a high level of trust in their healthcare providers, especially their infectious disease physicians, whereas general practitioners were rarely mentioned. They cited this trust as a major resilience factor, while also calling for more integrated and multidisciplinary care, including having general practitioners co-ordinate care of HIV and diabetes.
de Monteynard S et al. Perceptions of multiple chronic conditions and coping strategies among migrants from Sub-Saharan Africa living in France with diabetes mellitus and HIV: An interview-based qualitative study. PLOS ONE 18: e0284688, 2023 (open access).