This study assessed how caregivers’ disability and other socio-demographic characteristics are associated with OVC’s linkage to care. Characteristics of caregivers that were significantly associated with OVC linkage to care were disability, marital status, HIV status, education level and household SES. OVC age was also associated with linkage to care.
The findings revealed that OVC of disabled caregivers were 24% less likely to be linked to care, than their counterparts. While there is little literature available on how disabilities of caregivers alter their capacity to look after the health needs of children, the World Health Organization (WHO) reports that globally, people with disabilities have poorer health outcomes than those without (24). Challenges faced by people with disabilities in accessing healthcare have been widely reported; difficulties in arriving to health facilities, obtaining doctor’s appointments, being attended to in a facility, paying for treatment (25). A study from rural South Africa reported transport-related issues as a prominent barrier in accessing health facilities (26). The study also revealed increased barriers for older people with disabilities and those with lower levels of education (26). Challenges in regards to health care support for OVC have also been widely reported, with caregivers stating inadequate quality of health care, lack of health workers, long distance to the health facilities, financial burden of caring for orphans (27), paying for drugs during high inflation or lack of employment. A study done during a different time period of the Kizazi Kipya project indicated that the highest proportion of OVC lived in households with lowest SES (28), suggesting that economic constraints could be a major player in linkage to care. Interventions that focus solely on the needs of orphans may also not attract caregivers as the benefits would not be shared by other household members (15). For this study, a combination of the factors identified could be attributed to lower linkage to care for OVC of disabled caregivers. HIV-related stigma is commonly reported (29), as is stigma related to disability (21), therefore disabled caregivers dealing with HIV infection of their OVC face double stigmatization, possibly leading to lower linkage to care (30).
OVC of HIV positive caregivers were more likely to be linked to care. Households with HIV positive caregivers have often been associated with negative child outcomes, such as health adversities, lower school enrollment, poor mental health, exposure to abuse and adolescent risk behavior, consequently increasing risk of HIV (31). Previous studies have also reported the burden of caregiving for HIV positive children, including food insecurities, difficulty in access to healthcare and economic instability (32). To overcome these adverse outcomes, community-based care models have been encouraged (32, 33). To this end, the finding that linkage to care is higher among OVC living with HIV positive caregivers indicates a strength of implementing the Kizazi Kipya program, in terms of making services accessible to the double burdened households.
The study found higher likelihood of linkage to care among OVC of caregivers with higher education level. A qualitative study had reported a likelihood of hampered access to health information and adherence to ART for caregivers with low education level (32). Another study reported low HIV knowledge among caregivers with low level of education, associated with lower disclosure of their child’s HIV status (34). Similarly, OVC of caregivers with higher education in this study reported being linked to care. This could be attributed to higher HIV knowledge among caregivers with higher education and their willingness to accept care for their OVC. This is an important finding for the project, as community workers who serve households of caregivers with low literacy level should receive additional support in terms of creating awareness around the importance of linking OVC to care and provide referrals for the same.
Interestingly, OVC living in households of higher SES were less likely to be linked to care than those with lower SES. While reasons behind this would have to be understood through further analysis of household level characteristics and qualitative study, one of the reason could be that caregivers of OVC with higher household SES prefer and are able to seek care at private facilities. Using multi-country Demographic Health Survey (DHS) data, a study that assessed utilization of private health sector for HIV-related services showed positive association between income and use of private health facilities for sexually transmitted infections (STIs) care (35). Another reason for not reporting to be linked to care could be HIV-related stigma. However, previously done studies have reported mixed findings; with increased HIV prevalence, poorer HIV outcomes (36) and increased HIV related stigma (29) among individuals in lower and middle SES, while some evidence also showed higher HIV prevalence among wealthier individuals in sub-Saharan African countries, associated to increased risky behaviors and having multiple sexual partners (37).
Also, linkage was more likely as OVC grew older, suggesting the possibility of increased self-initiatives for self-care as age advances. This may come as an addition to the readily available caregiver support and consequently magnify the OVC’s likelihood to be linked to care and treatment as their age exceeds 5 years. Previous studies have also reported other treatment support provided to school-aged children, such as appointment reminders and treatment buddies (38), to be effective in linkage and retention to care among older children. Therefore, the younger OVC, especially those in the youngest age group (0–5 years) may require more tailor-made support as their linkage may entirely depend on the external environment.
OVC of caregivers who had ever been married were less likely to be linked to care than OVC of caregivers who had never been married. Although there is not enough literature to support this, it could be because unmarried caregivers would have fewer responsibilities in the household, compared to ever married caregivers who would be looking after their spouse, children or in-laws, therefore being more able to commit to accessing HIV facilities with their OVC. Unmarried caregivers might also be younger (siblings or cousins of OVC) than ever married caregivers (grandparents of OVC), who would be better able to support their OVC.