Chronic disease management as seen by sick persons and by informal and professional caregivers: a qualitative study

Background One in four people in Belgium suffer from chronic disease. Despite the large number of persons concerned, few data are available on patients’ and informal caregivers’ social experiences at the time of diagnosis or during long-term care. Research question Do patients, informal caregivers and professional caregivers experience the same reality about the chronic condition? As illness and disease represent the way patients and professionals experience a single reality, how should informal caregivers be placed? Methods Qualitative exploratory study. Semi-structured interviews (n = 23) were performed separately with patients suffering from chronic conditions and with informal and professional caregivers (triads). GPs (university trainers) recruited the patients upon invitation from the researchers; the patients themselves appointed the informal and professional caregivers. The interview guide explored the experience of sickness, its impact on everyday life, and the care given. Eight chronic conditions were surveyed and analysed. Two researchers conducted a thematic analysis of the members of each triad and a comparative analysis of the 8 conditions. Results The status and role of informal caregivers depended on their pre-existing relationship within the family structure. Some tended to act as a guarantor of the patient’s adherence to treatment, which could negatively influence their relationship, depending on the patient’s acceptance of his/her chronically ill status. This status was variously accepted by the sick persons at different points in the evolution of disease and depending on the constraints they faced. Informal and professional caregivers acted either independently (no integration of informal caregivers in professional care), in complementary and coordinated ways, or in a competitive manner (part of the professional care managed by informal caregivers, possibly at the patient’s request). Conclusion Reflecting our limited results, patients’ stories of sickness should be considered, along with their pre-existing relational context with informal caregivers. Further research is needed to better integrate informal caregivers’ lay expertise.Innokar