title: Considering patient non-participation in health care.
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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: FoU Seniorium, Danderyd, Sweden. anncatrine.eldh@osteraker.se
authors.forename: Ann Catrine
authors.initials: AC
authors.lastname: Eldh
authors.forename: Inger
authors.initials: I
authors.lastname: Ekman
authors.forename: Margareta
authors.initials: M
authors.lastname: Ehnfors
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003142:Communication; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006764:Hospitals, Community; D006801:Humans; D008297:Male; D008875:Middle Aged; D033262:Narration; D010353:Patient Education as Topic / Q000592:standards; D010358:Patient Participation / Q000523:psychology* / Q000706:statistics & numerical data; D026684:Personal Autonomy; D011369:Professional-Patient Relations; D011602:Psychophysiologic Disorders; D036301:Qualitative Research; D045808:Refusal to Participate / Q000523:psychology* / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D013548:Sweden