Considering patient non‐participation in health care

Objective  The aim of this study was to depict patient non‐participation as described by a diverse group with recent experiences of being patients. Background  Patient participation is regarded as a primary condition for optimal quality of care, suggesting that non‐participation should be avoided. A common understanding of the concept of patient non‐participation is needed. A discrepancy in definitions of patient non‐participation has been found in health‐care interactions, health‐care classifications and health‐care research, and little is known of what patient non‐participation represents to patients. Study design  A survey consisting of closed‐ended and open‐ended questions was administered to persons that had recently been patients to gather respondents’ descriptions of what they considered as patient non‐participation. Qualitative content analysis was used to analyse free‐text descriptions, and descriptive statistics were used for the close‐ended alternatives. Findings  Lacking information (e.g. not being provided with appropriate information) and lacking recognition (e.g. not being listened to and/or lacking recognition as an individual with individual needs and concerns) were significant aspects of patient non‐participation. Furthermore, non‐participation encompassed facing organization‐centred, as opposed to patient‐centred, health care as well as feeling insecure in health care interactions. Conclusion  The findings provide input for a better understanding of what patients experience as non‐participation. Organising for the caregivers to be able to thoroughly listen to the patients’ illness narratives would easily reduce the risk of patient’s experiencing what is described as non‐participation and would provide a sound base for patient learning needs.