Patients' Perspectives on Informal Caregiver Involvement in HIV Health Care Appointments

Abstract

HIV treatment advances have had a major impact on disease-related morbidity and mortality. However, not all HIV-positive persons are experiencing improved health outcomes. In the United States in particular, patient nonadherence and prescription bias may explain some health disparities. To address these factors, researchers and practitioners may benefit from enlisting support from an underutilized resource: patients' families and significant or supportive others. Little is known about informal caregiver involvement in treatment planning or how such involvement might affect health care delivery and receipt. The purpose of this study was to investigate patient perspectives on informal caregiver involvement in treatment planning, including the perceived consequences of others' involvement. Forty-two predominantly African American HIV-positive adults who were partnered at the time of diagnosis were recruited in 2005 from infectious disease clinics in Milwaukee, Wisconsin. Participants took part in individual semistructured interviews. They were asked questions pertaining to their diagnosis, treatment planning, and informal caregiver involvement at medical appointments. Data were recorded, transcribed, and coded for themes using NVivo 7 qualitative software. A minority of those interviewed were accompanied to medical appointments. Still, participants overwhelmingly identified more potential benefits than disadvantages to others' involvement. Benefits categories include improved information communication, the development of stronger relationships, improved family health, and successful treatment outcomes. Disadvantages of involvement included negative emotional and behavioral consequences for the patient and disrupted patient–provider communication. Recommendations for health care providers are discussed.