Self-management and support needs of chronically ill people

Abstract

Over the past decade, self-management by patients has been recognized an important aspect of chronic illness care, as it can help avoid preventable mortality and morbidity and improve the quality of life of patients and their families. However, not all people with a chronic illness are able to perform self-management properly in order to minimise the impact of the chronic disease and maintain a satisfactory quality of life. The aim of this study was to gain insight into chronically ill people’s self-management and their related needs for self-management support. The question is why some people are able to manage their chronic illness, while others struggle to do so; and why some people need a lot of support from professional caregivers while others do not? To answer these questions, the study focused on the perspective of chronically ill people. All data used in this study were provided by members of the National Panel of people with Chronic illness or Disability (NPCD), which is a nationwide prospective panel-study that provides information about people’s experiences and perceived consequences of living with chronic illness or disability. First, self-management takes place in the individual context of someone’s personal life. Self-management and related support needs are therefore determined by this life context. To better understand the difficulties chronically ill people encounter with self-management, one should have an understanding of their life context. Is a person still working full time and how are things at work, does he or she have a relationship and how is this relationship or does a person have children and how are these children doing? Second, the needs of chronically ill people for self-management support change over time. The support needs at one moment in time can change completely within the space of few months. These changes can be related to changes in the course of the illness, in personal life context, or in both. Either way, self-management is a dynamic process that requires support throughout the whole process and not just during the first months or years of the chronic illness. Finally, based on the results of this study, it is questionable whether a disease-specific approach of chronic illness care is appropriate to improve care for all people with chronic illness, including those who suffer from less prevalent chronic diseases or from multi-morbidity. Although some self-management tasks might be disease specific, self-management support in general does not need to be disease specific. Comprehensive chronic illness care that starts from patients individual goals, preferences and competencies instead of patients’ chronic disease type(s) may be a promising way to improve the quality of chronic illness care for all.