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Keywords:

  • concept analysis;
  • non-participation;
  • patient participation

Abstract

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.