The complexity of patient participation: lessons learned from patients' illness narratives.
OBJECTIVE
To describe the meaning of active participation from the patient's perspective.


METHODS
We used a narrative framework to analyze transcripts generated from 16 qualitative open-ended, semi-structured interviews with primary care patients in Houston, Texas.


RESULTS
Patients' illness narratives reflected several themes related to patient participation. These included patients' perspectives of illness (i.e., how central the illness is in the patient's overall life story and how changeable the patient believes their illness to be) and aspects of actions pursued in the context of patients' illness narratives (i.e., the degree of illness-related activity that a patient engages in and the role of partnership with the patient's physician in health decision making and illness management). The relationships among these themes explained a limited number of distinct illness-management strategies pursued by patients.


CONCLUSIONS
Our findings revealed a level of complexity to patients' healthcare participation that has not been previously described. Patients' illness-management strategies were explained by four thematic story elements in dynamic interplay with unique variations for each individual. Further research is needed to explore how these story elements influence communication between patients and physicians.


CONCLUSIONS
By understanding the nature of and relationships between the thematic elements in patients' illness narratives, practitioners will be able to better inform their negotiations with patients regarding participation in healthcare.
Haidet
Paul
P
The Houston Center for Quality of Care and Utilization Studies, The DeBakey VA Medical Center, and Baylor College of Medicine, 2002 Holcombe Blvd, 152, Houston, TX 77030, USA. phaidet@bcm.tmc.edu
Kroll
Tony L
TL
Sharf
Barbara F
BF
D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002908:Chronic Disease / Q000523:psychology*; D003142:Communication; D003299:Cooperative Behavior; D019468:Disease Management; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D033262:Narration; D010353:Patient Education as Topic; D010358:Patient Participation / Q000379:methods / Q000523:psychology*; D010817:Physician-Patient Relations; D011320:Primary Health Care; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology; D012648:Self Care / Q000379:methods / Q000523:psychology; D011795:Surveys and Questionnaires; D013781:Texas