From support to boundary: A qualitative study of the border between self-care and professional care

Abstract

Objective While healthcare systems globally are promoting self-care, patients’ perceptions of the policy shift remain relatively unexplored. Our qualitative study explored how organisation of care shaped patients’ perceptions and experiences of self-care in dealing with their respiratory illnesses. Methods We recruited 31 people, representing a range of ages and respiratory conditions and generated data using illness diaries, telephone interviews and focus group discussions. Data were transcribed, analysed and triangulated using the framework approach. Results Patients were aware of the increasing focus on self-care, but felt that the term was incongruous as it described what they were already doing. While many respondents appreciated increased clinical responsibility some felt ‘abandoned’ by professionals. To be active partners in care, they needed flexible access to trusted healthcare professionals who respected patients’ knowledge about their condition and preferences for management. Conclusion The shift to self-care needs to be underpinned by a whole system change. Professionals need communication skills to engage with patients as partners in care, working within systems that offer flexible access to supportive care. Practice implications Systems of care for people with long-term conditions need to ensure flexible access between self-care and professional support. Simplification of systems, clear sign-posting and co-ordination of individual patient care by a key trusted professional are essential.