Health literacy in context: struggling to self-manage diabetes - a longitudinal qualitative study.

OBJECTIVES: Considering health literacy needs is a key component of health services responsiveness to diabetes self-management among vulnerable individuals. The purpose of this qualitative study was to provide a detailed analysis of the health literacy of people with type 2 diabetes in relation to their daily self-care practices.
DESIGN: Nested qualitative study in the ERMIES randomised controlled trial testing a 2-year structured care in type 2 diabetes. First round of semidirected interviews at the beginning of the trial with thematic analysis of content. Second round at the completion with directed interviews guided by the first round's themes together with Health Literacy Questionnaire. SETTINGS: Interviews conducted at home. PARTICIPANTS: Forty-four (31 females/13 males, 30-79 years, glycated haemoglobin (HbA1c)≥7.5%) consecutive participants out of 100 recruited in the ERMIES trial from 4 diabetology outpatient settings (Reunion Island). Forty-two respondents to the second round interviews.
RESULTS: Three poles structured into eight themes characterised practices in context: health knowledge, disease management, expertise and social support. The relationships of participants in each of the eight themes were differentiated, ranging from functional to interactive and critical. Treatment and follow-up were essentially functional, while diet and exercise remained more interactive. Social support and relationship to health professionals were important determinants of disease management.
CONCLUSIONS: Treatment management and disease monitoring remain primarily the job of health professionals, as opposed to diet, physical activity and social support being part of ordinary practice. Decision-making, as a shared social task, as well as resources for participation in health services, should be considered for relevant interventions in type 2 diabetes. TRIAL REGISTRATION NUMBER: NCT01425866. © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

This longitudinal qualitative study examined health literacy and health practices in vulnerable people struggling with uncontrolled type 2 diabetes enrolled in a 2-year structured intensive managed care.

Interviews were conducted at home, considering the social contexts of health literacy related to disease management in real life, and health literacy needs were assessed too via the multidimensional Health Literacy Questionnaire.

The study took place in Reunion Island characterised by deeper social disparities compared with mainland France and the studied population was mainly female, with few included men.

Introduction

Long-term management of diabetes is challenging.1 2 People with type 2 diabetes struggle with the everyday constraints, treatment adherence and monitoring.3–6 Beside medical diagnostic and therapeutic measures, self-management education and support has been shown crucial in helping persons with diabetes manage the disease while maintaining quality of life.7–11 France, with a high level of health insurance coverage, has been confronted to a health system primarily dedicated to acute care, struggling to establish a real chronic care coordination.12 In spite of a slight improvement in the quality of care between 2001 and 2007, the French ENTRED study has shown that only 17% of people with type 2 diabetes participated in self-management education, mainly in hospital setting.13 Only 2% of persons treated for type 2 diabetes received all of the recommended monitoring regular exams and follow-up.14 In contrast to a self-efficacy rated as high regarding nutrition, exercise, treatment management and self-monitoring of blood glucose,13 the level of medication adherence is quite low,15 and the complications of diabetes remain frequent and severe, with increasing social and regional disparities.16 Reunion island, a French overseas department, as an example, is characterised by a higher prevalence of complications despite good accessibility to quality care.16 17

Health literacy (HL) refers to the cognitive and social skills which determine the ability of individuals to gain access to, understand, remember and use information in ways which promote and maintain good health.18 19 HL has been linked to numerous health indicators and outcomes20 and is a potential key component of health perceptions and practices.21–23 In diabetes, HL has been mainly assessed through functional tests of reading ability, understanding and/or numeracy and has been linked to numerous outcomes.24 Beyond functional HL, communicative and critical HL are central.25 Communicative HL skills integrate the complex cognitive and social skills needed to perform daily activities, to extract information and infer meaning from different forms of communication, to apply new information to changing circumstances, and to interact with health services. Critical literacy refers to skills that can be applied to analyse critical information and adapt to better control life situations.

Understanding the complex interplay of self-care practices in diabetes in the light of HL skills and resources has been seldom explored.26–29 Qualitative studies are needed to better understand the capacity and resources of individuals to implement health-relevant and meaningful practices and to adapt them to the strengths and limitations of the environments in which they are implemented. This study aimed to qualitatively analyse HL in its multiple dimensions in relation to self-care practices, in the context of structured care in four ambulatory diabetes care facilities in La Réunion.

Methods

Study design and population

This study was part of the mixed ERMIES randomised controlled trial. The main objective of ERMIES was to evaluate the efficacy of a structured self-management education intervention in undercontrolled type 2 diabetes (glycated haemoglobin (HbA1c)>7.5%).30 Out of 4 diabetology outpatient settings of the island of Reunion, 100 people were included between October 2011 and November 2014.30 31 Participants of both arms benefited from a structured initial group education course conducted by trained educators, blind to the subsequent group allocation, within the 12 weeks following inclusion (online supplemental appendix 1). The intervention group was invited every 4 months to attend a structured group session. All included participants attended a quarterly medical follow-up in the diabetology unit during the study period (96 weeks).

The nested qualitative study included 44 subjects. Interviews were conducted in 2012 with the first 44 consecutive participants included in ERMIES who agreed to participate in the qualitative study. Among the 44 included the nested qualitative study, 42 participated to the second-round interviews in 2015, and 2 declined. Five out of 42 dropped out from the trial (online supplemental appendix 2) but accepted to respond to the second-round interviews.

When included, all participants were informed of the conditions of the research. They signed a written consent for a qualitative study by means of interviews conducted in their homes. At the time of the appointment (before each interview), a new information with oral agreement was given.

Participant and public involvement in research

Participants were not involved in setting the research question; nor did they participate in the design or implementation of the qualitative study. No participants were asked to advise on interpretation or writing up of results. However, during the second round of interviews, the results of the first-round interview’s analysis were exposed and discussed with some participants who wished to do so.

The results of the research will be provided to study participants, and to local stakeholders, in order to join in the HL needs assessment as part of the eLS-OIIS project, whose objective is to help adapting health services responsiveness to persons with chronic diseases in Reunion island.32

Qualitative study

First round of interviews

The research involved two research assistants trained in the socioanthropological approach. The work on the interviews and analyses was built up through teamwork and regulated as the research developed, taking into account the contexts in which the participants were interviewed. The analyses of all the interviews were carried out by the two researchers independently of each other: these analyses were then crossed, discussed and reinterpreted in the event of differing interpretations. The result thus corresponds not to a single interpretation of the data, but to an intelligibility constructed, negotiated and regulated within the team, at every stage of the scientific process. Interviews, 1 hour each on average, were conducted at the participants’ homes and focused on diabetes, self-monitoring, access to information, relationships to education and learning, participant positioning, decision-making, environment and support. The participants were invited to describe their behaviour in hospital, domestic and occupational settings, and in sociocultural contexts such as family events. Specific topics included were the history and progression of the illness, knowledge acquired and sources, food practices, physical activity, monitoring and treatment of diabetes, and the participants’ perceptions of the healthcare providers (HCPs) and services. The usual sociodemographic data and information about diabetes (duration, HbA1c, self-management of blood glucose, treatment, complications) were collected from the participants at the time of the first-round interviews.

Each interview was recorded and then fully transcribed by the research assistants in the language chosen by the respondent. Transcripts of interviews held in Creole were subsequently translated into French. The 44 interviews were investigated through thematic discourse analysis understood as communication patterns of both a social and linguistic nature.33 The categories and signifiers were developed using the constant comparison method.34 The themes which emerged were tested and modified during additional cycles of data collection. The saturation of data, with a wealth of social configurations and relations to health, hospital and home environment, could be obtained despite the practical constraints of the recruitment of participants immediately after the inclusion in the ERMIES study. The analysis was carried out using the NVivo V.10 QSR International qualitative analysis software. Several themes constituting the management of diabetes in the ordinary context could be determined. For each of these themes, we identified three types of relationships in reference to the categories of HL established by Nutbeam:25

A ‘functional relationship to …’, that is, an instrumental relationship to (diet, physical activity …), tasks being exercised without a critical look in everyday situations.

An ‘interactive relation to …’ that engages cognitive and social skills used to participate actively in everyday activities, infer the meaning of different forms of communication and apply the new information to changing circumstances.

A ‘critical relation to …’ that mobilises more sophisticated cognitive and social skills, applied to a critical analysis of information and their use to exercise greater control over the events of life.

The first names used here for the quotations are fictitious.

Second round of interviews

Based on the analysis of the initial interviews, we created a qualitative data collection grid that was proposed in 2015 to 42 participants (2 out of the 44 declined the interview). This grid (online supplemental appendix 3), covering the eight themes and the three levels of ‘relations to’ was completed both by the interviewee and the interviewer. All interviews and exchanges around the grid were recorded and transcribed in full, which, in case of distances in the responses, made it possible to listen to each speech again.

The coding and analysis were subjected to a triangulation process carried out by three members of the research team (DB, JC-S and MB-D). The data from the 44 interviews and the second round’s grids of interviews of behaviour at home were crossed-referenced in two ways: for each participant (which made it possible to produce case studies of participants), but also by specific themes (food, physical activity etc.) taking the whole of the corpus into account. This work made it possible to show intraindividual and interindividual variations relating to the talks and practices in relation to the disease and its management, the world of healthcare, the social and familial environment, and involvement in conduct for prevention and health (food, physical activity). Hence, it was possible to describe the individual changes and the evolution of the type of relationship (functional, interactive, critical) for each of the 8 themes from first to second rounds.

The inter-rater reliability of the coding of the type of relationship (functional, interactive, critical) to the themes was 62%. When the coding was discordant, the three researchers confronted their points of view to reach a consensus.

During the second round in 2015, HL was assessed using the Health Literacy Questionnaire (HLQ) for 39 of the 42 participants. The HLQ is a multidimensional questionnaire with robust psychometric properties,19 translated and validated in French,35 and composed of 44 items exploring HL through 9 independent scales of 4–6 items (online supplemental appendix 4). The individual score for each scale is calculated as the mean of the corresponding items.

Results

Sociodemographic and clinical characteristics of the 44 participants are described in table 1. The gender distribution (31 of 44 were females) was roughly the same as the overall ERMIES trial population (67%) as well as median age, education, employment and income.

Table 1

Sociodemographics and clinical characteristics of the sample (n=44)*

		All n=44	Intervention n=23	Control n=21
Sex	F/M	31/13	14/9	17/4
Age (years)	(30–49)	9	4	5
	(50–59)	12	8	4
	(60–69)	12	4	8
	(70–79)	11	7	4
Household composition	Live alone	13	8	5
	Live alone, with children	4	2	2
Education level	Primary school or less	9	7	2
	Middle school	24	11	13
	High school	6	2	4
	University undergraduate	5	3	2
Occupational status	Full-time or part-time employment	13	5	8
	Unemployed	12	8	4
	Retired	19	10	9
Income	Less than €1200	29	15	14
	€1200–€1999	7	4	3
	€2000–€3999	7	3	4
	≥€4000	1	1	0
Literacy	Difficulties in reading/writing	10	5	5
Diabetes, known duration	<9 years	11	7	4
	10–19 years	19	8	11
	≥20 years	14	7	7
HbA1c at inclusion	7.5%–7.9%	8	5	3
	8%–8.9%	20	8	12
	9.0%–11.9%	16	10	6
Diabetes treatment at inclusion	Oral agents (±GLP1 agonists)	20	10	10
	Insulin (±oral ± GLP1 agonists)	24	13	11
Self-monitoring of blood glucose	Once a day, fasting	15	10	5
	2–3 times a day, before meals	15	6	9
	Before and after meals	14	7	7
Known complications	Renal	18	13	5
	Heart	10	7	3
	Eye	2	1	1
	Feet	5	3	2
	Arteries	9	6	3
	None	14	6	8

*Among participants in the control group who participated to the first round of interviews, 2 declined the second-round interview: 1F, 50 years, full-time employment, €2000–€3999, middle school, diabetes >20 years duration, insulin, HbA1c 8%–8,9%, SMBG 6 per day, no complications; 1M, 62 years, retreated, €1200–€1999, high school, diabetes 10–19 years, oral agents, HbA1c 8%–8,9%, SMBG 3 per day preprandial, complications: heart, arteries.

F, female; GLP1 agonist, glucagon-like peptide 1 agonist; HbA1c, glycated haemoglobin; M, male; SMBG, self monitoring of blood glucose.

First-round interviews

Day-to-day management of the disease took place in a variety of forms and contexts: at home, in the family, in the healthcare context or setting, during leisure time or in the socioprofessional sphere. A set of eight themes could be individualised from the coding of the interviews that constituted the ordinary management of diabetes. These eight themes are grouped into three poles which interact through complex dynamics (table 2).

Table 2

The three main poles and eight themes of disease management issues

Poles	Themes
Health knowledge	Knowledge base
	Access to knowledge
Management of the disease	Food
	Exercise
	Treatment
	Monitoring
Expertise, support and social network	Relationships with professionals
	Health and social support

The consistency of the individual work through these eight themes, its continuity and its inclusion in the different relationships (functional, interactive or critical) were, to varying degrees according to the participants, constitutive of the management of health and illness (figure 1).

Figure 1

Disease management. functional, interactive and critical relationships to the eight themes. First-round interviews, n=44. HCP, healthcare provider.

Health knowledge and access to knowledge

Relationship to knowledge and access to knowledge was primarily functional (for 29 out of 44 participants).

Diabetes is too much sugar in the blood (Sylvain, 46 years old, craftsman).

I try to listen (to the radio or TV), I try to understand, but it goes into my head but I don't understand. (Irène, 72 yr, retreated)

For some participants, the relationship to knowledge was more interactive (n=11). Participants were able to make connections between at least two elements, such as the links between diabetes and a balanced diet or regular physical activity.

Regarding access to knowledge, 13 were interactive.

…Sometimes, if my daughter arrives with her computer, she searches, I ask, and then […] documents are sent to me all the time, so I read, there are testimonies, there are drugs, how to do it, how not to do it. So I'm following all this very closely (Constance, 64 yrs, retreated).

At the critical level, a few participants (n=4) refer to a complex system, in which interactions between the different components contribute to the evolution of the disease and its complications.

Only two participants appear to have a critical relationship to knowledge access.

Diabetes, in terms of price, drugs, it’s linked to research, to laboratories that also put what they want, and then there are crazy people who can write anything. So on this side, there is a lack of control over what is shown on the Internet. (…) It’s a gold mine, but you have to know if it’s gold, real or synthetic. (Damien, 73 yrs, retreated)

The ‘ordinary’ management of disease

Food and exercise

Many participants (24/44) exhibited a functional relationship to diet.

To eat, I eat about as the hospital tells us to do and what it gives us. Delphine, 50 yrs, unemployed.

Others (14/44) were more interactive:

I even get to correct something when I make a mistake at a meal the next time. I know how to follow my diet and how to promote it in relation to my diabetes. Ludivine, 76 yrs, retreated.

Or even critical (4/44):

it’s in the way you cook things… for example, eat a cod cari, well, you have to put oil in it, otherwise how else? well, that’s exceptional, … we have a fish cari, if for example I do toothfish, I almost don't put oil in it because toothfish is already a fish that is fatty, even if it’s good fat. Blandine, 57 yrs, account manager.

Similarly, the relationship to exercise was mainly functional (29/44)

I go to the health network for sport but that’s fine they do about 15 days but then there’s nobody left, we can't do it alone, we don't really know how to do it, … Irène, 69 yrs, retreated.

Treatment and monitoring

The relationship to treatment and monitoring was functional for the majority of participants (36 and 39, respectively, on a total of 44).

I take all the medicines as required […] I have an appointment with doctor X; he will see if I need to add a medicine (Beatrice 64 yrs, occasional saleswoman)

You have to trust the treatment, because the doctor has prescribed it for us… (Charles, 56 yrs, Gardien)

So the doctor can check the blood sugar level: it’s how high and all that,… (Brigitte, 62 yrs, retreated)

A few participants were more interactive, especially regarding self-monitoring:

On Tuesday, I had 1 hour of Taiichi, my test was 1.30 in the morning, 2.04 after breakfast, 1.31 at noon. I did Taiichi, 1.96 after lunch, so the benefit of Taiichi continues.[…] Wednesday I was at 1.59 and after breakfast I was at 3.02 but I know why: I ate a banana […] at noon I went shopping […] I left my car as far away as possible so that I could walk, […] (Ludivine, 73 yrs, retreated)

Only one participant exhibited critical relationship to treatment and monitoring:

I have my insulin, three injections a day and then I check with the meter […] If necessary, I'll do other checks during the day, […] Well at one point, I had stopped [the bike] because it was too hot and so there, as I didn't change my treatment, obviously the treatment was too strong and so I had hypoglycemia’. (Guillaume, 66 yrs, retreated, artist)

Expertise, support and social network

The relationships with HCP was functional for 26/44.

There’s the nurse who comes to prep my medicine […], I just didn't understand, because I can't read very well, so I used to take the drugs in a mess, any way … (Tatiana, 70 yrs, unemployed)

but more often interactive (16/44) than for treatment or follow-up.

I'm more used to Dr. X, he knows my problems so I prefer to see him personally, he helps me a lot morally […] And then there’s Nurse Y who explains very well, who’s a good nurse, frankly I have nothing to say, well maybe they serve to support me too, morally and medically, that’s it. (Constance, 51 yrs, retreated)

All of those who displayed functional relationship to HCP were functional too for treatment (except one interactive) and disease follow-up. Interestingly, the interactive nature of the relation to HCP was not associated with interaction in treatment for 11 out of 16 or in monitoring (14/16).

Social support

In most cases, participants did not feel isolated in the management of their illness: 26 out of 44 participants receive real family or friends support, which was expressed as much in the form of solidarity as in the family sharing. This relational frame crystallises around eating practices ‘Everyone at home eats the same since I became diabetic’ (Adeline, 73, retired), physical activity ‘Sometimes when you decide, it’s either her or me, you walk a little bit’ (Sylvain, 47, artisan) or in understanding the disease: ‘It’s true that my husband, working in the hospital, it helped me a lot’ (Blandine, 60, employee). This support differs according to the relative, as Clarisse (55 years old, no professional activity) testifies: ‘Yes, maybe not with my partner but my children, and then there is my family nearby, my sisters, my brothers, my parents, so no worries’. In some cases, the person concerned with diabetes prefers to spare his or her family by taking charge of the management of the disease himself or herself. ‘For me, it is not a handicap, diabetes is there, we manage and that’s it. (…). I never talk about it (diabetes), it’s my case’ (Sabine, 69, retired).

Functional, but also interactive social support was frequently associated with functional follow-up (16/17 and 23/26) and functional treatment (15/17 and 21/26), but not always with functional relationship to food (11/17 and 15/16) or exercise (11/17 and 17/26).

Second round of interviews

The interviews conducted with 42 participants at the beginning and at the end of the ERMIES study highlighted the changes over time in the variables that make up the relationship with disease management, but in different ways according to individuals and contexts. The two participants who declined the second interview, but completed the trial, were both in the control group, and exhibited at the first-round interview a functional relationship to all themes except social support that was interactive.

Overall, health knowledge and access to knowledge evolved into a more interactive and critical relationship among participants, slightly more markedly in the intervention group. The most notable change was observed in the management aspects, particularly in relation to food, with many participants shifting from a functional to an interactive relationship (figure 2). With regard to physical activity, the many shifts from interactive to critical showed that participants understood the benefits of physical activity and were able to better integrate it into their practices. For these two themes, changes were observed in both the intervention and control groups. The move towards a more interactive or even critical posture was also objective for disease follow-up and monitoring, but here more so in the intervention group. However, the relationship to treatment remained mostly at a very functional level (28 out of 42) ‘The nurse prepares that, and I take my oral medication. And I have the prescriptions for all the medicines I take it’ (Marguerite, 79, retreated, intervention group), and few participants modulated and adjusted the treatment on their own regardless of the allocation group. There was a clear shift for many participants towards a more interactive relationship with HCP, slightly more in the intervention group. The relationship to social support was also less functional.

Figure 2

Number of patients with functional, interactive and critical relationships to the eight themes of disease management in 2012 (first-round interviews) and 2015 (second round interviews). Ermies ethnosocio study, qualitative thematic analysis of interviews, n=42 participants. HCP, healthcare provider.

The five participants who dropped out from the trial were younger than those who completed the study, with low income, and two of them had difficulties in reading and writing. All five had an essentially functional relationship with treatment and follow-up of the disease, leaving the decision and conduct to the physician and other healthcare professionals, although two of them were interactive in their relationships with providers.

Table 3 displays the mean scores through the 9 dimensions of the HLQ for the 39 participants who filled in the questionnaire during the second round of interviews. Overall, the greatest difficulties were in having sufficient information to manage health (HLQ2), in appraising health information (HLQ5) for the first part of the questionnaire, in ability to find good health information (HLQ8) and in understanding well enough health information to know what to do (HLQ9) for the second part of the questionnaire. On the contrary, scores were higher for scale 1 ‘Feeling understood and supported by HCP’ and scale 6 ‘Ability to actively engage with HCP’.

Table 3

Health Literacy Questionnaire (HLQ) profiles of the sample (n=39)

HLQ scales		Mean (SD) (95% CI)
	First part of the questionnaire	Scores 1–4*
1	Feeling understood and supported by healthcare professionals	3.31 (0.53) (3.15 to 3.48)
2	Having sufficient information to manage my health	3.05 (0.63) (2.85 to 3.25)
3	Actively managing my health	3.16 (0.45) (3.02 to 3.30)
4	Social support for health	3.03 (0.54) (2.86 to 3.20)
5	Appraisal of health information	2.95 (0.54) (2.78 to 3.12)
	Second part of the questionnaire	Score 1–5†
6	Ability to actively engage with healthcare professionals	3.87 (0.63) (3.68 to 4.07)
7	Navigating the healthcare system	3.72 (0.70) (3.50 to 3.94)
8	Ability to find good health information	3.34 (0.69) (3.12 to 3.55)
9	Understand health information enough to know what to do	3.52 (0.79) (3.27 to 3.76)

*Response options from 1—strongly disagree—to 4—strongly agree.

†Response options from 1—cannot do or always difficult—to 5—always difficult.

Discussion

Both people with type 2 diabetes and HCP are confronted in the real world with the daily and long-term management of the disease.4 36 37 HL is a potential determinant in attaining lifestyle behaviour, medication adherence and adequate monitoring of the disease.38 39 This qualitative study, in which 86 interviews were conducted at the initiation and after the completion of a structured 2-year follow-up, showed the multidimensional nature of HL in relation to self-care practices and disease management. Ordinary management of diabetes consisted of distinct postures for lifestyle behaviours on one side, and for medical aspects on the other: participants mainly had a more active (interactive or critical) relationship to diet and exercise than to treatment and monitoring. This was even more sizeable after 3 years, with most participants remaining functional for treatment and monitoring, while being interactive or even critical for exercise and diet. Social support and patient–provider relationship were important elements associated with a more interactive posture as regard to disease management.

In this study, a fine qualitative approach of disease management analysed through the theoretical lens of the Nutbeam’s HL scheme yielded useful insights for a comprehensive description of strengths and weaknesses at the individual and contextual level for people struggling with disease management.25 The HLQ was used as a complement to describe the HL needs expressed by participants. The HLQ is a validity driven questionnaire and grounded in real-world settings.19 Correspondence with the HL profiles using the 9 scales of the HLQ should be cautious and grasped in a complementary way. Indeed, the qualitative data were strengthened by the higher scores on the HLQ scales related to HCP and services (Feeling understood and supported by HCP, HLQ1, Ability to actively engage with HCP, HLQ6, Navigating the healthcare system, HLQ7), and lower scores on the HLQ scales related to health information (having, finding, appraising). Similar HLQ profiles were found in community-dwelling people with type 2 diabetes in Australia, with the highest scores in dealing with HCP (HLQ1, HLQ6), and the lowest in having, appraising or finding health information (HLQ2, HLQ5, HLQ8).40

In this population of participants struggling with insufficiently controlled type 2 diabetes, our results highlight the predominant perceptions and attitude regarding treatment and monitoring remaining under the expertise of HCP. O’Connor et al41 reported that people with diabetes who did not improve glucose control were more positive about their care providers, unquestioning acceptance of the doctor’s role and treatment. At the opposite, a less passive approach to HCP, as well as a strategic non-compliance with medication have been described as key elements in succeeding in diabetes management and well-being.42 Timely information and support from HCP, adapted to the actual individual constraints allow sustainable efforts for self-management.43

Studies have shown difficulties in actively managing health, health information finding, understanding and appraisal, as well as ability to engage with HCP.19 40 44 Using the HLQ, Friis et al45 reported the high treatment burden in persons with chronic multimorbidity and difficulties in understanding health information. This is in line with the apparent contrast found in this study between the level of sense of being supported by HCP and struggling with diabetes control and handling of own useful and relevant health information. For many participants, letting the caregivers take the reins of conducting and adapting medication, as well as providing long-term monitoring, made it possible for them to get involved in the challenging daily tasks of making the required nutritional and exercise changes. Studies in UK revealed also the importance of HCP attitudes regarding blood glucose readings for the continuing and relevant self-monitoring.46 Moreover, persons with diabetes lacked understanding of what to do faced to blood glucose results, as what could be noticed too here.

This qualitative study highlights the potential shift from functional to interactive or even critical attitude obtained after a 2-year long integrative care including structured self-management education in people with poorly controlled diabetes. Other studies have shown the role of interactive and critical HL in successful self-management of chronic disease.16 However, this shift highly differs by individual, medical, healthcare and social contexts.16 47 Taking into account HL profiles and adapt self-management education to these HL needs is crucial in chronic diseases.3 48–50

Social support appeared to be frequently associated with active management of disease. Maintaining self-management is a hard daily task, demanding individual investment as well as social, familial, not just taking regularly medications and coping with lifestyle.4 49 On the basis of individual dispositions issuing from time and experience, the power of the everyday context surrounding key practices to control and overcome illness have to be considered.3 43 Low personal resources, for example, regarding the appropriation of health information, together with burdensome family and social situations may explain difficulties in engagement with self-management.43

Gender distribution of participants with most females is worth noting, and this was in line with the distribution in the whole ERMIES sample (67%). Lower inclusion rate of males vs women have been previously noticed in other studies in Reunion.51–53 According to the national health insurance’s data the prevalence of declared and/or treated diabetes in Reunion island is higher in women than in men (9.6% vs 7,9 %),54 suggesting a possible underdiagnosis and a higher drop-out from care of type 2 diabetes in men. Beside gender, qualitative data obtained here from drop-out participants, who were younger, with low income at the second-round interviews suggest greater difficulties regarding understanding and appraising health information, social support and interactions with HCP.

The main strength of this study is its longitudinal design, with interviews repeated after the completion of a structured managed care and a multidimensional HL assessment via the HLQ. Interviews were conducted at home, taking into account particular features and social contexts, in a sample of participants who displayed actual difficulties in managing insufficiently controlled diabetes. Nevertheless, this study has some limitations. First, it took place during a comparative intervention trial with structured intensive managed care under the coordination of specialised secondary outpatient centres, and in Reunion island, a French outmost territory, with deeper contrasted social disparities compared with metropolitan France. The studied population was mainly female, and the question of the lower implication of men in self-care was difficult to analyse. Hence any extrapolation must be done with caution, even if, conversely, this context makes it possible to better grasp elements specific to disadvantaged populations. First-round interviews were held in the weeks after the inclusion in the trial. This may have influenced the discourse on practices and relationships with caregivers, even though before the initiation of the education course. The second round interviews took place after 2 years, following a structured managed care, so that the attitudes and relationships to HCP, treatment issues, and monitoring could have been influenced. Nevertheless, the results underline furthermore the needs of participants for other types of support from HCP and services, as exhibited by the combination of the HLQ profiles obtained together with the second round interviews: education and support have to work on the actual contextual factors that make sense in decision making and sharing and in the appropriation of relevant health practices on an everyday basis. More specifically, the transition from a passive attitude towards monitoring and the elements allowing for the relevant adaptation of treatment and health practices should be the subject of a process of appropriation in which the particular contexts should be apparent.

This longitudinal qualitative study in vulnerable participants struggling with type 2 diabetes and low HL, shows that decision making, handling of treatment and disease monitoring remains primarily the purview of HCP. Not all self-care practices are equivalent in terms of awareness, understanding their usefulness and appraising their effect. Moreover, the ability and the willingness of engaging in some self-practices like self-monitoring, follow-up awareness and treatment adjustment is often weak. However, this seemingly passive attitude is counterbalanced by feeling supported and trusted by HCP and is not inconsistent with an otherwise active attitude of engaging in lifestyle behaviours. For the latter, social support and shared social tasks are critical. HCP have a key role in helping chronically ill people to take long-term control of health information and services, while bearing in mind the prevalent functional relationship with monitoring and treatment adaptation.

The multidimensional nature of diabetes management and of HL, both embedded in social configurations, has to be acknowledged. Conceiving and designing interventions and services aiming at improving diabetes self-management should take into account these dimensions of self-care and assess the differentiated HL dimensions according to individual variations and contexts.