‘It is like learning how to live all over again’ A systematic review of people’s experiences of living with a chronic illness from a self-determination theory perspective

Objective: To conduct a systematic review and synthesis of qualitative evidence exploring the views and experiences of people living with a chronic illness that utilised self-determination theory. Methods: We searched MEDLINE via OvidSP, PsycINFO via OvidSP, PubMed, CINAHL, EMBASE, Google Scholar, the journals Qualitative Health Research and Qualitative Research. Studies were included if they used qualitative methods, explored the subjective experiences of people living with a chronic illness and underpinned the analysis with self-determination theory. Results: From 4605 articles, six met the inclusion criteria. The synthesis culminated in a line of argument that patients endeavoured to be ‘free from disease’. People’s desire to live a life free from disease required nurturing their: (1) need to feel empowered (autonomy), (2) perceived ability to self-care (competence) and, (3) their need to feel a sense of belonging (relatedness). Conclusion: This review has highlighted that the majority of studies included in this review focused on the clinical aspects of managing a chronic condition and changing patient health behaviours. This suggests that there is a need for deep reflection on the current practice of caring for patients with a chronic illness. Exploring the lived experience has the potential to unravel the psychological and emotional needs of those living with a chronic illness.