"I washed and fed my mother before going to school": Understanding the psychosocial well-being of children providing chronic care for adults affected by HIV/AIDS in Western Kenya

Abstract

With improved accessibility to life-prolonging antiretroviral therapy, the treatment and care requirements of people living with HIV and AIDS resembles that of more established chronic diseases. As an increasing number of people living with HIV and AIDS in Kenya have access to ART, the primary caregivers of poor resource settings, often children, face the challenge of meeting the requirements of rigid ART adherence schedules and frequent relapses. This, and the long-term duty of care, has an impact on the primary caregiver's experience of this highly stigmatised illness -an impact that is often described in relation to psychological deprivation. Reflecting the meanings attached to caregiving by 48 children in Western Kenya, articulated in writing, through photography and drawing, individual and group interviews, this paper presents three case studies of young caregiving. Although all the children involved in the study coped with their circumstances, some better than others, we found that the meanings they attach to their circumstances impact on how well they cope. Our findings suggest that only a minority of young caregivers attach either positive or negative meanings to their circumstances, whilst the majority attaches a mix of positive and negative meanings depending on the context they are referring to. Through a continuum of psychosocial coping, we conclude that to provide appropriate care for young carers, health professionals must align their understanding and responses to the psychosocial cost of chronic care, to a more nuanced and contextual understanding of children's social agency and the social and symbolic resources evident in many African communities.

Parental HIV disclosure in Burkina Faso: Experiences and challenges in the era of HAART

“…While parents felt relieved following disclosure, the potential negative impacts of this shift of the secrecy onto children cannot be ruled out. Children providing care to chronically ill parents may suffer in the long run from psychological deprivation (Skovdal & Ogutu 2009). This should be addressed by further research.…”

Child prosociality within HIV-affected contexts: the impact of carer ill-health and orphan status

“…Orphaned youth may regard themselves as more prosocial in light of the heightened emotional sensitivities and domestic responsibilities they incur prior to and following the loss of parents (Betancourt et al, 2011; Skovdal and Ogutu, 2009). Self-recognition of prosociality is a promising finding, particularly in contexts of risk, where it may translate into more adaptive and resilient capabilities (Theron and Theron, 2010; Ungar, 2008).…”

“…For the child, parental illness may trigger emotional distress and loss of freedoms due to caring for an unwell loved one, as well as disruptions to education, isolation, potential exploitation by family, and stigmas associated with AIDS orphan status (Chi and Li, 2013; Harms et al; 2010; Sherr et al, 2014). However, parental ill health may also present mutual prosocial benefits for the carer-child dyad through greater emotional closeness and intimacy (Tompkin, 2007), with children ascribing experiential gains through opportunities to learn new skills, increased maturity, and pride in caring (Skovdal and Ogutu, 2009). In this regard, prosociality highlights a concern for the well-being of others through “sharing, donating, caring, comforting, and helping” (Caprara et al, 2012, p.1289).…”

“She looked like an Alien”

“…Preliminary analysis included the identification of participants, repeated words and clustering of responses to organise data and for cohesiveness which were then coded by key words and contextual meaning as clarified by participants. In depth exploration and study (Smith and Osborne, 2007) was aided by illustrated or written depictions of meanings as explained by participants (Greig et al, 2013;Ewald et al, 2011;Ewald, 1985;Osborne, 2006a;2006b;Skovdal and Ogutu, 2009). Bahasa Malaysia verbatim narrative transcripts were translated into English and then validated for meanings by asking for participants' clarification and cross referencing with the Oxford Bahasa Malaysia-English dictionary because in a few instances a Bahasa Malaysia word could have different English meanings.…”