In diabetes, both patients and HCP are confronted in real world to the management of the disease on a daily basis and on the long term [4, 34, 35]. Health literacy is a potential determinant in attaining lifestyle behaviour, medication adherence, and adequate monitoring of the disease [36, 37]. This qualitative study, in which 86 interviews at home and in outpatient settings were made to 44 people at the initiation and after the completion of a structured 2-year follow-up, has shown the multidimensional nature of health literacy in relation to disease management. The 8 themes individualized could be grouped in 3 poles: the ordinary management of the disease, the relation to disease knowledge, and support (social and expertise). The ordinary management of diabetes was constituted by distinct postures for lifestyle behaviours on one side, and for medical aspects on the other: participants exhibited predominantly 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 mainly functional for treatment and monitoring, while being interactive or even critical on exercise and diet. Social support, and relation type with HCP were important elements associated with a more interactive or critical health literacy as regard to disease management. These results were strengthened by the health literacy profiles largely exhibiting higher scores on the HLQ scales related to health care providers and services (Feeling understood and supported by health care providers, Ability to actively engage with health care providers, Navigating the health care system), and at the opposite lower scores on the HLQ scales related to health information (having, finding, using or appraising).
In this population of participants struggling with insufficiently controlled type 2 diabetes, our results highlight the predominant perceptions and attitude of patients regarding treatment and monitoring remaining under the expertise of HCP. O’Connor et al [38] found that patients 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 [39]. Timely information and support from HCP, adapted to the actual individual constraints allow sustainable efforts for self-management [40].
A certain level of knowledge about diabetes is needed in order to make adjustments to the treatment. Knowledge gained by experience is then more valued than the doctor’s generalised scientific knowledge [39]. Friis et al [41] reported the high treatment burden in patients with chronic multimorbidity and difficulties in understanding health information. This is in line with the apparent contrast found in the present 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 [42]. Moreover, patients lacked understanding of what to do faced to blood glucose results, as what could be noticed too in the present study.
Social support appeared here 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, 43]. 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, 40]. Low personal resources, e.g regarding the appropriation of health information, together with burdensome family and social situations may explain difficulties in engagement with self-management [40].
Strengths and limitations
The main strength of this study is its longitudinal design, with interviews repeated after the completion of a structured managed care. 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, and mostly in a long-standing duration of diabetes.
Nevertheless, this study has some limitations. Firstly, the context of the study must be acknowledged, during a comparative intervention trial with structured intensive managed care under the coordination of specialized secondary outpatient centres, and in Reunion island, a French outmost territory, with deeper contrasted social disparities compared to metropolitan France. 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 initial education course. The second round of interviews took place after 2 to 3 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 in accordance with the evolution should be the subject of a process of appropriation in which the particular contexts should be apparent.