Experiences of adolescents who are primary caregivers to their Acquired Immune Deficiency Syndrome (AIDS) afflicted parents in sub-Saharan Africa: a systematic review protocol

Review question/objective What are the experiences of adolescents who are caring for their Acquired Immune Deficiency Syndrome (AIDS) afflicted parents in sub-Saharan Africa? Background Over the years there has been a significant increase in the number of children who assume primary care-giving roles and responsibilities1 to their ailing parents. Children who are providing care to their sick parents are known as child caregivers1-3. Although much of the literature and research on child care-giving has previously been conducted in the United Kingdom and Canada 1-3, there has been a growing interest in the area of child care giving in Africa 4-7. This interest has been driven by the age of the epidemic of the Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (HIV/AIDS) 4. HIV/AIDS has contributed to an increase in mortality and morbidity rates globally. HIV is a human virus that causes the immune system to be deficient8-10, by weakening it and causing the body to be predisposed to opportunistic infections that later develops into AIDS. Sub-Saharan Africa is the region that carries the greatest burden of the disease and is mostly affected by the epidemic of HIV/AIDS. Multiple and concurrent partnerships9 coupled with inconsistent condom use and low levels of medical male circumcision11 are the main drivers of the virus in the region. In 2010 it was reported that an estimated 22.6 million people in Sub-Saharan Africa were living with HIV 8, 1.9 million became infected 8 and 1.2 million people died due to AIDS related opportunistic sickness 8. The prevalence of HIV/AIDS is estimated to be high among the 15-49 year age groups in comparison to other age groups; this has thus contributed to high mortality rates 8 among that age group. Since the discovery of the epidemic 30 years ago, more than 30 million people have died due to AIDS related illness. Children are particularly vulnerable and are mostly affected by the plight of HIV/AIDS; to date more than 14.8 million children have been orphaned due to AIDS related illness12. The mainstream of health care funding in most African countries comes from the Global fund13-14. Africa has been mostly affected by the withdrawal of subsidized health care funding due to the global financial crisis; this has impacted significantly on the care of HIV/AIDS inflicted individuals as mainstream funding was directed mostly to HIV treatment rather than care and hospitality of those who are sick15-16. Hospitals and primary health care facilities were unable to accommodate AIDS inflicted people because of the costs of keeping them and the lack of resources due to limited funding. Increased incidence of HIV placed a great burden and strain on health care resources (both primary health care and hospitals) 5, 16. This increased the burden on families to provide informal primary health care at home to their HIV afflicted family members 5. Studies on child caregivers have reported that female adolescents are more likely to assume caregiving roles in comparison to their male counterparts17. Male child caregivers often assume the traditional male roles and duties 6, such as ensuring that there is food. However some studies have reported that gender is not the predictor of roles in child caregiving but rather it is expected that the eldest child assumes the caregiving role especially within the African context. This translates to them doing both domestic and nursing duties. The latter includes bathing, feeding and toileting of the parent; the former includes cleaning, cooking, and laundry. While previously within African communities the extended family was the dominant structure and served as the secondary means of support to the nuclear family 12, there has been a paradigm shift in the role of the family which has resulted in a move towards the nuclear family system. The change in the socio demographic system of the family which has resulted in a decline in the role of the extended family has left the children in a rather difficult position where they are expected and obligated to take up the role of primary care-giving. Adolescents who care for their AIDS afflicted parents not only have to endure the burden of caring for their sick parents; but are faced with the inevitable reality that their parent's health may deteriorate and result in death as the disease progresses and intensifies. This has a negative effect causing feelings of anxiety and fear about the future without the parent 5, 17. It also places great responsibility on the affected adolescent and has traumatic consequences. Caring for the sick has many psychological and psychosocial effects as at the very least these adolescents do not get the time to engage in activities with their peers. While some researchers have argued that it is a huge burden and responsibility to the child providing the care17, some of the studies have shown that it instills in them responsibility and fosters them to be advocates of care in their community, by helping other bed stricken community members 7. The proposed systematic review will focus on the experiences of adolescents that have provided primary care to their AIDS afflicted parent(s). The systematic review will adopt the World Health Organization's (WHO) definition of an adolescent. WHO classifies an adolescent as a child between the ages of 10 and 19. The current review will focus on countries in sub-Saharan Africa; with priority given to the studies conducted in southern Africa as it has the highest HIV/AIDS prevalence8. A preliminary search of the Joanna Briggs library of systematic reviews, the Cochrane Library, CINAHL, PubMed and PROSPERO has revealed that there is not currently a systematic review (either published or underway) on this topic.

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