Caregiver burden among adults caring for orphaned children in rural South Africa

Abstract

The AIDS epidemic has created an unprecedented number of orphans. While largely absorbed by extended family, this additional responsibility can weigh heavily on their caregivers. The concept of caregiver burden captures multiple dimensions of well-being (e.g., physical, social and psychological). Measuring the extent and determinants of caregiving burden can inform the design of programmes to ease the negative consequences of caregiving. This study uses the baseline data from a study assessing interventions for orphans and vulnerable adolescents in the Eastern Cape, South Africa. Orphan caregivers (n = 726) completed an adapted version of the 12-item Zarit Burden Interview. In addition to basic caregiver and household demographics, the survey also collected information on AIDS-related illness and recent deaths. Descriptive data are presented, followed by multivariate Poisson regression models to explore factors associated with caregiver burden. Approximately 40% of caregivers reported high levels of orphan caregiving burden. Feelings of stress and inadequacy concerning their care responsibilities as well as anger towards the child were common. Household food insecurity was the most important predictor of orphan caregiving burden (marginal effect = 7.82; p < 0.001 for those reporting severe hunger); income was also a significant determinant. When other AIDS impacts were added to the model, only the AIDS-related illness of the caregiver was significantly associated with burden (marginal effect = 3.77; p < 0.001). This study suggests that caregivers with economic vulnerability and those struggling with their own AIDS-related illness feel most overburdened. These findings are particularly relevant to service providers who must identify caregivers in need of immediate assistance and allocate limited resources effectively. To alleviate caregiver burden, programmes must foster greater economic security (e.g., by facilitating access to social grants or directly providing cash transfers) and coordinate services with home-based care programmes serving the chronically ill.

Caregiver mental health and HIV-infected child wellness: perspectives from Ugandan caregivers

“…In South Africa, 40% of caregivers of AIDS orphans indicated a high level of caregiving burden, including feelings of stress, anger, and inadequacy as a provider (Kidman & Thurman, 2014). Important predictors of this burden were low income, food insecurity, and caregiver AIDS-related illness.…”

Socio-demographic correlates of depression and anxiety among female caregivers living with HIV in rural Uganda

“…Nakimuli-Mpungu et al, 2011). One reason may be that HIV-infected women in rural communities are frequently affected by poverty and social isolation, increasing their vulnerability to distress (Kidman & Thurman, 2014). Typically, women in these communities are smallholder farmers, with food production mainly for subsistence livelihood.…”

Examining the nonkin support networks of orphaned adolescents participating in a family‐based economic‐strengthening intervention in Uganda

“…As a result, extended family members, who are mostly grandmothers, are not willing or able to care for additional children (Karimli, Ssewamala, & Ismayilova, 2012;Kasedde, Doyle, Seeley, & Ross, 2014;Kidman & Thurman, 2014;Mafumbate, 2014;Powell & Hunt, 2013). As a result, extended family members, who are mostly grandmothers, are not willing or able to care for additional children (Karimli, Ssewamala, & Ismayilova, 2012;Kasedde, Doyle, Seeley, & Ross, 2014;Kidman & Thurman, 2014;Mafumbate, 2014;Powell & Hunt, 2013).…”

“…In addition, as people already infected with the disease continue to die, the number of orphaned children continues to increase, putting a strain on the extended family system that traditionally provided care and support to orphaned children. As a result, extended family members, who are mostly grandmothers, are not willing or able to care for additional children (Karimli, Ssewamala, & Ismayilova, 2012;Kasedde, Doyle, Seeley, & Ross, 2014;Kidman & Thurman, 2014;Mafumbate, 2014;Powell & Hunt, 2013). Orphaned children who are not absorbed into extended families end up living on their own in child-headed households (Evans, 2011;Foster, Makufa, Drew, & Kralovec, 1997) or being forced into early marriages, and others end up on the streets where they are exposed to risky behaviors, including prostitution and substance use, which increase their chances of exposure to sexually transmitted infections, including HIV/AIDS (Dinkelman, Lam, & Leibbrandt, 2008;Gillespie, Kadiyala, & Greener, 2007;Meghdadpour, Curtis, Pettifor, & MacPhail, 2012;Thurman, Brown, Richter, Maharaj, & Magnani, 2006).…”