The orphaning experience: descriptions from Ugandan youth who have lost parents to HIV/AIDS

Abstract

The HIV/AIDS epidemic has continued to pose significant challenges to countries in Sub-Saharan Africa. Millions of African children and youth have lost parents to HIV/AIDS leaving a generation of orphans to be cared for within extended family systems and communities. The experiences of youth who have lost parents to the HIV/AIDS epidemic provide an important ingress into this complex, evolving, multi-dimensional phenomenon. A fundamental qualitative descriptive study was conducted to develop a culturally relevant and comprehensive description of the experiences of orphanhood from the perspectives of Ugandan youth. A purposeful sample of 13 youth who had lost one or both parents to HIV/AIDS and who were affiliated with a non-governmental organization providing support to orphans were interviewed. Youth orphaned by HIV/AIDS described the experience of orphanhood beginning with parental illness, not death. Several losses were associated with the death of a parent including lost social capitol, educational opportunities and monetary assets. Unique findings revealed that youth experienced culturally specific stigma and conflict which was distinctly related to their HIV/AIDS orphan status. Exploitation within extended cultural family systems was also reported. Results from this study suggest that there is a pressing need to identify and provide culturally appropriate services for these Ugandan youth prior to and after the loss of a parent(s).

Child abuse and neglect among orphaned children and youth living in extended families in sub-Saharan Africa: What have we learned from qualitative inquiry?

“…Participants described being treated less well than other children, most often the caregivers’ biological children. This involved being deprived of resources such as food, clothing and schooling (Ansell & Young, 2004; Cluver & Gardner, 2007; Foster, Makufa, Drew, Mashumba, & Kambeu, 1997; Funkquist, Eriksson, & Muula, 2007; Harms, Jack, Ssebunnya, & Kizza, 2010; McGraw & Wameyo, 2005; Nyambedha, Wandibba, & Aagaard-Hansen, 2003; Nyamukapa et al, 2010; Oleke, Blystad, Fylkesnes, & Tumwine, 2007; Oleke, Blystad, Moland, Rekdal, & Heggenhougen, 2006; Snipstad, Lie, & Winje, 2005; van Blerk & Ansell, 2007; Young & Ansell, 2003) or being made to engage in excess chores or paid work (Ansell & Young, 2004; Harms et al, 2010; McGraw & Wameyo, 2005; Mojola 2011; Nyambedha et al, 2003; van Blerk & Ansell, 2007; Young & Ansell, 2003): “[My uncle] had many children, and he favoured them when we shared food and gifts, and I was overworked like a slave” (Ansell & Young, 2004). …”

“…Many studies (8/15) discussed participants’ experiences with reduced schooling during their parents’ illness or after their death (Ansell & Young, 2004; Chase, Wood, & Aggleton, 2006; Foster et al, 1997; Funkquist et al, 2007; Harms et al, 2009; Harms et al, 2010; Mangoma et al, 2008; Mmari, 2011; Oleke et al, 2006, 2007; van Blerk & Ansell, 2007; Young & Ansell, 2003). This was due to an inability to pay school fees or uniforms (Funkquist et al, 2007; Mangoma et al, 2008; Oleke et al, 2007; Young & Ansell, 2003) or being required to engage in paid work or chores (Chase et al, 2006; Foster et al, 1997; Mmari, 2011; Oleke et al, 2006, 2007; van Blerk & Ansell, 2007; Young & Ansell, 2003): “[My uncle] said: ‘you are not my child so I cannot send you to school’” (Foster et al, 1997).…”

“…Participants living with grandparents were sometimes required to take on tasks because of their caregiver’s frailty (Ansell & Young, 2004; Chase et al, 2006; Funkquist et al, 2007; van Blerk & Ansell, 2007; Young & Ansell, 2003): “[My grandmother] was so old that I had to do it all” (van Blerk & Ansell, 2007). Many reported increased responsibilities since their parents’ death and perceived excessive demands, exceeding those of other children and interfering with schooling (Ansell & Young, 2004; Chase et al, 2006; Foster et al, 1997; Funkquist et al, 2007; Harms et al, 2010; Mangoma et al, 2008; McGraw & Wameyo, 2005; Mmari, 2011; Mojola, 2011; Oleke et al, 2006, 2007; van Blerk & Ansell, 2007; Young & Ansell, 2003). …”

“…A number of studies (7/15) discussed “property grabbing” by family members – removing goods from family homes, appropriating land or denying orphans their inheritance (Chase et al, 2006; Foster et al, 1997; Harms et al, 2010; Mangoma et al, 2008; Nyambedha et al, 2003; Oleke et al, 2006; Seloilwe & Thupayagale-Tshweneagae, 2009; Wood et al, 2006): “Auntie only came when she wanted to take the property” (Foster et al, 1997). “Property grabbing” often occurred soon after bereavement, resulted in further impoverishment and created family divisions (Foster et al, 1997; Harms et al, 2010; Mangoma et al, 2008; Oleke et al, 2006; Seloilwe & Thupayagale-Tshweneagae, 2009; Wood et al, 2006).…”

“We are Purified by Fire”: The Complexification of Motherhood in the Context of Migration

“…In the study, the children of one of the respondents had to travel approximately 85 kilometres each way in order to collect the money sent by their mother for their monthly food, and then not only make sure there were provisions in the house, but also budget to ensure that they had sufficient food to last until the next remittance arrived. Many children living alone also evidence exaggerated fears such as fear of being robbed or attacked, or fear of starvation (Harms et al 2010).…”