Special issue on: HIV across the lifespan

We hear it all the time and know it to be true—HIV does not discriminate based on age, race or ethnicity, gender, sexual orientation, or socioeconomic status. This issue explores living with HIV throughout the lifespan from childhood to old age. Originally, the field of human development focused on children, specifically the years from infancy through adolescence. The decades of adulthood were covered in one stage, until the decline of late old age. We now understand that we grow and change throughout life, including multiple stages during adulthood—early, middle, and late. Each stage is characterized by different tasks and biopsychosocial adjustments building on the achievements or challenges of the previous stages. The human development process is complex, occurring across multiple dimensions and rooted in the context of family, community, and culture (Santrock, 2008).

Development experts cite the universality of aging (Juengst, 2005). However, early in the HIV/AIDS epidemic, people died fairly quickly after diagnosis, denied the opportunity to live through multiple life stages. As the availability of anti-retroviral therapy (ART) has improved longevity, people living with HIV are increasingly managing their HIV disease, with children living to adulthood and young adults growing into the “gray” epidemic.

One of the main tasks for HIV service providers is to help people living with HIV plan for their future with good health as they age (O’Brien, Wilkins, Zack, & Solomon, 2010). Family caregivers are critical to that task; ideally people with HIV are surrounded by those who care about them and for them and, thus, HIV affects caregivers. Caregiving responsibilities also occur at different life stages. Those caring for young children living with HIV may be young adults or older grandparents. Caregivers of adults may be middle-aged or older family members. Adolescent children may be caring for parents or family members (Land & Levine, 2016).

The question then is how do social service providers support people living with HIV and their loved ones in having healthy and productive lives which extend, hopefully, over decades? The articles in this issue contribute to that answer with research that spans the life stages—childhood to older age—as well as the globe, representing people living with HIV and their caregivers in Central Africa, East Africa, Canada, and the United States.

We start with two articles about children living with HIV. Muskat, Salter, Shindler, Porter, and Bitnun evaluated a hospital-based support group in Toronto for children and adolescents living with HIV. Both children and their caregivers found that the intervention supported treatment adherence while giving them a sense of empowerment or control over the disease. In Central Africa, Newman and colleagues compared children between the ages of 5 and 18 years old who knew their HIV status with those who did not know their HIV status on several key variables. Children who had been told their HIV status were more likely to attend support groups and be on ART for a longer period of time. However, disclosure did not appear to have an effect on whether children were taking ART or not.

As we move through the lifespan, several articles examine how adults in the U.S. experience the impact of HIV at different stages, with mental health as a primary consideration. Brandt and colleagues specifically examined anxiety symptoms in adults with and without HIV under 40 and over 50 years old. As noted in previous research, they found that anxiety symptoms were more prevalent in those living with HIV than those without HIV. However, the authors found no significant difference in anxiety symptoms in the different age groups. They speculate that with age may come the ability to cope with these symptoms. Nevertheless, anxiety and neurocognitive impairment intersected to affect functioning at any age. Arentsen and colleagues identified protective factors for adults living with HIV with cognitive impairment, specifically focusing on factors that support medication adherence. Supportive treatment, simpler medication regimens with fewer changes over time, and reduced stress contributed to greater ART adherence.

Adults over 50, both women and men, comprised the sample in two studies about mental health and neurocognition. Kapadia and colleagues studied the intersection of social support and mental health, finding that social support may mitigate the mental health burdens of older people living with HIV. Halkitis and colleagues looked specifically at neurocognitive functioning in older adults, replicating the declines noted in other samples of older adults living with HIV while raising questions about disparities across sociodemographics.

Lastly, Musangali, Daire, and DeLorenzi focus our attention on those affected by a loved one’s HIV status—specifically, people in Kenya who are caring for a family member. The caregivers ranged in age from 18–80 with most being female and in the young adult age range of 25–34. They provided care for young children through middle-age adults with most of the care receivers being young adults. The caregivers were often caring for those close in age to themselves while also managing their own HIV disease. The authors note that ART is having an impact in Kenya on longevity but that caregiving is still an important function.

Cross-cutting all of these articles is the importance of social support and social services to quality of life and improved functioning at any life stage. Several themes emerge that offer direction for developing services across the lifespan. Medication adherence, of course, is a major contributor to living longer and may need to be addressed at each life stage. Children are developing cognitively and rely on their adult caregivers to help them understand and manage the disease. Adults living with HIV experience neurocognitive changes potentially affecting their ability to follow complex medication regimens. Older adults with HIV have a higher rate of mental health problems than the general population. For all people living with HIV, mental health can intersect with stigma and can lead to a shortened life span (Farinpour et al., 2003; Vanable, Carey, Blair, & Littlewood, 2006). Social support such as support groups, mental health services, and the care of family, friends, and others living with HIV have a long history in the epidemic and are key to supporting mental health and adherence (Mason, Vazquez, & Mason, 2014; Welch & Gant, 2004).

Although HIV does not discriminate based on characteristics, we know stigma and oppression due to race, gender, sexual orientation, and socioeconomic status contribute to disparities and poor outcomes, including increased HIV risk (Wyatt et al., 2013) and decreased life expectancy (Samji et al., 2013). The findings from this issue can be a guide for service provision; however, people living with HIV and their caregivers cannot be treated generically. Our mandate in social services is to consider the context in which people are managing HIV and tailor services to those contexts. As these services cut across disciplines and service areas—health, mental health, education, HIV—coordination will be key (Husbands et al., 2012), as will continued advocacy for access to appropriate services so all can have the opportunity for long productive lives.