What patient involvement means to new patients at two HIV clinics: A longitudinal, qualitative study.

Objectives: This study 1) defines patient involvement from the perspective of patients new to a provider, 2) describes provider communication that patients perceive as promoting involvement, and 3) examines changes in patient definitions of involvement over time.

Methods: We enrolled 56 patients at two HIV clinics in Houston, Texas, from August 2013 until March 2015. We interviewed patients three times during the first year of care and analyzed interviews using content analysis.

Results: The mean age was 45 years; 54% were men. Patient definitions of involvement ranged from adherence- to decision-oriented. Analysis revealed three provider communication behaviors that patients perceive as promoting involvement: 1) soliciting patient feedback, 2) discussing treatment options and trade-offs, 3) narrating the decision-making process. Definitions of involvement can change over time as providers reframe the patient's illness as manageable and through perceived partnerships with the provider.

Conclusion: Provider communication plays a critical role in shaping new patients' perception of involvement and can make patients feel involved even when patients do not actively make medical decisions.

Practical Implications: Finding strategies to make patients feel involved in their care is important, particularly for new patients, even if those strategies do not necessarily promote more talk from the patient.