Being a mother of a child with HIV-related Neurodevelopmental Disorders in the Zimbabwean Context

Abstract

BACKGROUND: There is a growing population of mothers caring for their biological children who are infected with Human Immunodeficiency Virus (HIV), in Zimbabwe. Many of these children present with HIV-related Neuro Developmental Delays (NDDs). The occupation of being a mother is a complex and multifaceted role geared towards caring for and nurturing children. The different ways in which mothers negotiate the unique circumstances linked to the occupation of being a mother to a child with diagnosis of HIV-related NDDs warrants exploration. AIM: The aim of the study was to describe the mother's experiences of engaging in daily occupations relating to caring for their child with HIV-related NDDs. METHODOLOGY: A descriptive qualitative study using a hermeneutic phenomenological approach was used to uncover the mothers' lived experiences of caring for their child with HIV-related NDDs. Data generated from phenomenological interviews conducted with five mothers were analysed inductively using a simplified version of the StevickColaizzKeen method FINDINGS: Two major themes, namely 'Ndozvazviri' (Resilient Acceptance) and 'Rekindled hope for the future' emerged from the findings. These themes revealed that caring for a child with HIV-related NDDs is a difficult and demanding role. Despite this, mothers accepted and found meaning in this caring role. Their meaning was expressed through the opportunity to care for their own child and to observe their progress in occupational development and engagement. These interactions created positive experiences for the mothers and rekindled their hope for the future of their child. DISCUSSION AND RECOMMENDATIONS: Despite the huge demands associated with being a mother of a child with HIV-related NDDs, mothers were committed to this role and were reluctant to entrust this role to others. The findings of this study encourage occupational therapists designing interventions for families, to carefully consider how the mothering role positively shapes the identities of mothers caring for children with HIV-related NDDs. Key words: mothering, HIV-related NDDs, caregiver

Play profiles of children with HIV/Aids: A comparative study

“…Similar findings were echoed from caregivers of children with congenital heart diseases who reported that they spent more time with their children (Sabzevari & Nematollahi, 2016) because more is required in the care of their children. Another study pointed out that caregivers wanted to be with their children most of the time, as a way of protecting them from stigma that is commonly associated with being diagnosed with HIV/Aids (Munambah et al., 2020). Caregiver involvement in the play of their children has potential to hamper or promote play.…”

“…Broadly, there is a paucity of literature on children's play in this context. One of the few studies on the caring occupation for children with HIV/AIDS in Zimbabwe reported that due to fear of stigma, guiltiness and self‐blame, caregivers were not willing to share their caregiving role with anyone instead their everyday doings were centred on care and protecting the children from stigma and possibilities of further harm (Munambah et al., 2020). Developing a better understanding of the play profile would improve the use of play as both an intervention outcome, as well as a medium for delivering intervention.…”

Seeking consensus on a play‐based intervention framework for promoting play of children with HIV/Aids in a low‐resourced setting: A Delphi study

“…In the model of children's play by Cooper (2000), the context is referred to as both the child's immediate environment (physical setting, available play materials, and social elements) and the surrounding cultural values and beliefs. A study conducted in Zimbabwe with caregivers caring for a child with HIV-related neurodevelopmental delays revealed that cultural and spiritual beliefs, as well as fear of stigma, impacts on how caregivers support and influence the play of their children with HIV/Aids (Munambah, Gretschell, & Sonday, 2020). Stigma, coupled with poverty, further adds to the burden of caring for a child with HIV/Aids in low-resourced settings (Steinert et al, 2017).…”

How do caregivers of children living with HIV/AIDS cope, and where do they get support?: A qualitative study in Ghana

“…10,11 Evidence suggests HIV-associated neuro-developmental delays among CLWHA. 12 Earlier studies have shown that caregivers experience severe burdens in Nigeria, 13 rural Malawi, 14 and Southern India. 15 Even in areas where there are reported mild/moderate burdens such as in Calabar Nigeria 16 and Malaysia, 17 caregivers express concerns of caring having a toll on their finances and psychological and physical health.…”

“…For children living with HIV/AIDS (CLWHA), the role of the caregivers becomes painstaking due to the likelihood of dependency of the children on activities daily 10,11 . Evidence suggests HIV‐associated neuro‐developmental delays among CLWHA 12 . Earlier studies have shown that caregivers experience severe burdens in Nigeria, 13 rural Malawi, 14 and Southern India 15 .…”