Aging with HIV and disability: The role of uncertainty

Abstract

Due to advances in treatment, people with HIV are living longer and developing disabilities related to the virus, adverse side effects of medications, and aging. Illness-related uncertainty has been shown to contribute to disablement; however, there is little understanding of the uncertainties related to aging with HIV. The purpose of this research was to describe the contribution of uncertainty to the disability experienced by older adults living with HIV. Forty-nine men and women living with HIV and 50 years or older participated in in-depth qualitative interviews exploring various aspects of social participation and disability. Transcriptions of the interviews were analyzed using a grounded theory approach. Age-related uncertainties were described in the following themes: source of health challenge; health providers' age-related knowledge and skills; financial uncertainty; transition to retirement; appropriate long-term housing, and uncertainty over who would care for them. While not directly attributable to aging, the episodic nature of HIV left many with uncertainties related to when their next episode of illness would occur and often resulted in an inability to plan in advance. Results highlight the need to focus on the notion of successful and positive aging with the view to identifying effective interventions that reduce disability and enhance the overall health of older adults with HIV. This work builds on previous studies highlighting the role of uncertainty in the disability experience by identifying age-related components specific to older adults aging with HIV.

A Multidimensional Assessment of Successful Aging Among Older People Living with HIV in Palm Springs, California

“…Coupled with our findings that PLWH were less likely to live with or be in a relationship with someone, the association between volunteer/work activities and feelings of isolation suggests that older PLWH must rely more on social support beyond that which is provided by family and friends and highlights the importance of community-support resources for this population. 16,17 These findings are consistent with other research, which suggests that older adults who live alone face higher risk of social isolation, which reduces the likelihood of successful aging. 27 Where possible, providers for older PLWH should suggest community-support resources to discourage social isolation and help curtail the negative effects that often stem from it, such as depression.…”

“…9,[13][14][15] Among older PLWH, depression often stems from feelings of isolation, lack of social support, and grief due to the loss of friends and family. 9,[16][17][18] However, research suggests that depressive symptoms can be reduced through social involvement (e.g., volunteering, working, etc. ), which often results in widened social networks and increased social support.…”

Contrasting stories of life-threatening illness: A narrative inquiry

“…Bernays, Rhondes, and Terzic (2014), in a longitudinal qualitative study of 20 people living with HIV in Serbia, reported narratives of coping, hoping and distress. Solomon, O'Brien, Wilkins, and Gervais (2014) studied the role of uncertainties in adults living with HIV. They found that the episodic nature of the illness led to uncertainty about current care and future needs as well as an inability to plan.…”

Community Involvement in Development of Evidence-Informed Recommendations for Rehabilitation for Older Adults Living With HIV

“…While we were unable to find other literature that refers to anxiety created through involvement in the guideline development process our experiences highlight the need for researchers to be mindful of this possibility especially in vulnerable populations. Aging with HIV is a relatively recent phenomenon fraught with uncertainty, 17 which may highlight vulnerabilities in this population. 4.…”