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

•Patients defined involvement in terms of adherence, information, and decision-making.•Patients also defined involvement in terms of encouraging physician behaviors.•Patient definitions of involvement changed over time. This study 1) defines patient involvement from the perspective of patients new t...

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Bibliographic Details
Published in:Patient education and counseling 2019-08, Vol.102 (8), p.1535-1540
Main Authors: Freytag, Jennifer, Jiang, Zhixin J., Giordano, Thomas P., Westbrook, Robert A., McCurdy, Sheryl A., Njue-Marendes, Sarah, Dang, Bich N.
Format: Article
Language:English
Subjects:
Adult
Aged
Decision Making
Female
HIV infection
HIV Infections - therapy
Humans
Interviews as Topic
Longitudinal Studies
Male
Middle Aged
Patient involvement
Patient Participation
Patient provider communication
Qualitative Research
Texas
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Summary:•Patients defined involvement in terms of adherence, information, and decision-making.•Patients also defined involvement in terms of encouraging physician behaviors.•Patient definitions of involvement changed over time. 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. 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. 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. 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. 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.
ISSN:0738-3991
1873-5134
DOI:10.1016/j.pec.2019.03.017