title: The meaning of patient participation for patients and nurses at a nurse-led clinic for chronic heart failure.
abstract: BACKGROUND
  The legislation of many Western countries emphasizes active patient participation. Patients with chronic heart failure (CHF), however, have experienced participation differently from the general interpretation of legal definitions. Education improves uptake of self-management strategies yet knowledge is lacking about support of patients' own resources in CHF.
  
  
  OBJECTIVE
  To explore the phenomena of patient participation and non-participation as shown in patient visits to a nurse-led clinic for CHF and as experienced by the patients and nurses.
  
  
  METHODS
  Data triangulation of field notes from participatory observations and texts from narrative interviews with the patients and assigned nurse specialists. Data were analyzed according to the phenomenological hermeneutic tradition.
  
  
  RESULTS
  Patients' experience of participation and non-participation was interpreted as "Being responsible and accepting responsibility" and "Lacking an equal relationship while being controlled", respectively. Nurses experienced patient participation as "Getting information and security to act" and patient non-participation as "Not accepting".
  
  
  CONCLUSIONS
  Conflicting values of patients and nurses, which were interpreted with respect to participation and non-participation, presumably might influence patient information and education negatively. The issue of participation should be raised as a means of attaining concordance and to facilitate patient participation with education specifically tailored to the individual patient's needs.
authors: The Department of Caring Sciences, Orebro University, Orebro, Sweden. ann-catrine.eldh@capio.se
authors: Ann Catrine
authors: AC
authors: Eldh
authors: Margareta
authors: M
authors: Ehnfors
authors: Inger
authors: I
authors: Ekman
mesh_terms: D000368:Aged; D000553:Ambulatory Care / Q000523:psychology; D001291:Attitude of Health Personnel; D002908:Chronic Disease; D032882:Comprehension; D003220:Conflict, Psychological; D003299:Cooperative Behavior; D006333:Heart Failure / Q000451:nursing / Q000523:psychology*; D006801:Humans; D007389:Internal-External Control; D008297:Male; D008875:Middle Aged; D033262:Narration; D009720:Nurse Clinicians / Q000458:organization & administration / Q000523:psychology*; D024802:Nurse's Role / Q000523:psychology; D009723:Nurse-Patient Relations; D015404:Nursing Methodology Research; D010353:Patient Education as Topic; D010358:Patient Participation / Q000379:methods / Q000523:psychology*; D012648:Self Care; D011795:Surveys and Questionnaires; D013548:Sweden; D016312:Treatment Refusal / Q000523:psychology