JMIR Publications

ABSTRACT

People living with chronic or long-term conditions typically spend only a few hours per year in direct contact with clinical care providers and over eight thousand hours managing their conditions independently. The scientific frameworks developed to understand this self-directed practice, primarily the literature on self-care and self-management, describe the tasks and practices involved in managing a condition, but not the deeper process by which people develop, over time, the knowledge, skills, and understanding needed to live well with it. We introduce the concept of meta-selfcare, defined as the process by which a person living with chronic or long-term conditions, individually and together with others, develops the knowledge, skills, and understanding needed to live what they themselves consider a worthwhile life in the presence of illness and/or disability and the varying limitations this may entail. Drawing on first-person accounts from co-authors living with a range of conditions, including Parkinson's disease, Systemic Sclerosis, chronic migraine, bowel disease, congestive heart failure, functional neurological disorder, HIV, lymphedema, plantar fasciitis, rheumatoid arthritis, and bipolar, we show that meta-selfcare is a real, recognizable, and meaningful process across conditions, contexts, and life trajectories. Naming this process has three consequences: it makes visible a form of patient knowledge that existing frameworks render invisible; it opens a research agenda for studying how patient knowledge develops and how health systems can support that development; and it creates the conditions for patient-led inquiry into a process that patients are uniquely positioned to investigate. Meta-selfcare is not new, people living with chronic conditions have been doing this for as long as they have lived with their conditions. What is new is the name.