The complexity of patient participation: lessons learned from patients' illness narratives

Paul Haidet, Tony L Kroll, Barbara F Sharf
Patient Education and Counseling 2006, 62 (3): 323-9

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.

CONCLUSION: 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.

PRACTICE IMPLICATIONS: 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.


You are not logged in. Sign Up or Log In to join the discussion.

Related Papers

Available on the App Store

Available on the Play Store
Remove bar
Read by QxMD icon Read

Search Tips

Use Boolean operators: AND/OR

diabetic AND foot
diabetes OR diabetic

Exclude a word using the 'minus' sign

Virchow -triad

Use Parentheses

water AND (cup OR glass)

Add an asterisk (*) at end of a word to include word stems

Neuro* will search for Neurology, Neuroscientist, Neurological, and so on

Use quotes to search for an exact phrase

"primary prevention of cancer"
(heart or cardiac or cardio*) AND arrest -"American Heart Association"