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.

Beyond the Ball: Implications for HIV Risk and Prevention Among the Constructed Families of African American Men Who Have Sex with Men

“…In addition to the high rates of HIV infection, AAMSM are less likely to enter and stay in medical treatment, less likely to be on highly active antiretroviral medications, less likely to have optimal adherence, and are more likely to have a higher viral load than other populations in the United States (Hightow-Weidman, Jones et al 2011; Chen, Rhodes et al 2012). A factor that very consistently and strongly predicts high HIV care attendance and high antiretroviral medication adherence is social support from those close to the person living with HIV (Catz, Gore-Felton et al 2002; Burgoyne and Renwick 2004; Gonzalez, Penedo et al 2004; Mosack and Petroll 2009; Mosack and Wendorf 2011). Recent research suggests that early treatment with antiretroviral medications can reduce HIV infection by decreasing the viral load of people living with HIV/AIDS and therefore the likelihood that they will pass the infection to others (Grant, Lama et al 2010; Cohen, Chen et al 2011; Baeten, Donnell et al 2012).…”

Health Care Provider Perspectives on Informal Supporters’ Involvement in HIV Care

“…HIV-related social support is generally considered to have a positive effect on patient mental health, adherence-related self-efficacy, and treatment adherence (Mosack & Petroll, 2009; Simoni, Frick, & Huang, 2006). Our data, however, shed light on the ways in which informal supporters can be harmful to HIV-positive persons or otherwise unhelpful to health care providers.…”

Discordance in HIV-Positive Patient and Health Care Provider Perspectives on Death, Dying, and End-of-Life Care

“…For our study, we used a secondary comparative method to compare data from two previously published studies in which participants consisted of HIV-positive patients 12 and infectious disease health care providers 13 who described their experiences with short- and long-term treatment planning and collaborative decision-making (e.g., family involvement in treatment planning). According to Harrison and Parker, 15 this method is useful to compare phenomena from participants of different groups when the same research question is examined in the two groups.…”