Maternal experiences of caring for an infant with neurological impairment after neonatal encephalopathy in Uganda: a qualitative study

Abstract

Purpose: The study investigated maternal experiences of caring for a child affected by neurological impairment after neonatal encephalopathy (NE) (“birth asphyxia”) in Uganda. Methods: Between September 2011 and October 2012 small group and one-on-one in-depths interviews were conducted with mothers recruited to the ABAaNA study examining outcomes from NE in Mulago hospital, Kampala. Data were analysed thematically with the aid of Nvivo 8 software. Findings: Mothers reported caring for an infant with impairment was often complicated by substantial social, emotional and financial difficulties and stigma. High levels of emotional distress, feelings of social isolation and fearfulness about the future were described. Maternal health-seeking ability was exacerbated by high transport costs, lack of paternal support and poor availability of rehabilitation and counselling services. Meeting and sharing experiences with similarly affected mothers was associated with more positive maternal caring experiences. Conclusion: Mothering a child with neurological impairment after NE is emotionally, physically and financially challenging but this may be partly mitigated by good social support and opportunities to share caring experiences with similarly affected mothers. A facilitated, participatory, community-based approach to rehabilitation training may have important impacts on maximising participation and improving the quality of life of affected mothers and infants.Implications for RehabilitationCaring for an infant with neurological impairment after NE in Uganda has substantial emotional, social and financial impacts on families and is associated with high levels of emotional stress, feelings of isolation and stigma amongst mothers.Improved social support and the opportunity to share experiences with other similarly affected mothers are associated with a more positive maternal caring experience. High transport costs, lack of paternal support and poor availability of counselling and support services were barriers to maternal healthcare seeking.Studies examining the feasibility, acceptability and impact of early intervention programmes are warranted to maximise participation and improve the quality of life for affected mothers and their infants.

Caring for children with neurodevelopmental disability: Experiences from caretakers and health workers in rural eastern Uganda

“…Moreover, the long term outcomes of children with NDD may be influenced by the severity of the problem, available services and care, caretakers' opinions on causes, as well as their attitudes and resilience in taking care of the children [5,6]. In LICs, caretakers of infants with developmental delays and neurological deficits oftentimes have limited knowledge on the causes of the problem, how it can be managed and the likely future consequences, which may compromise care seeking [3,7].…”

“…However, care-seeking practices in LICs for children with NDD remain poorly understood. Earlier studies in Uganda and Malawi evaluated parents' experiences about young children delivered in tertiary hospitals from urban setting [7,11]. In Kenya, a study done in a rural setting, looked at care-givers' experiences of school-going children [3].…”

Randomised controlled pilot feasibility trial of an early intervention programme for young infants with neurodevelopmental impairment in Uganda: a study protocol

“…Studies examining early neurodevelopmental outcomes after NE revealed a high prevalence of neurodevelopmental impairment (NDI) with 25% of those affected also having malnutrition from related feeding difficulties 15. Qualitative work highlighted the stigma and broad-ranging social, emotional and financial impacts on affected families 3…”

“…While in recent decades substantial progress has been made in reducing child mortality in low-income and middle-income countries (LMICs), the global burden of developmental disabilities remains unchanged 2. Child neurodevelopmental impairment (NDI) significantly impacts families in any context, but particularly in low-resource settings, where availability and access to support services are limited, financial barriers greater and social stigma more overt 3…”

Mothers as facilitators for a parent group intervention for children with Congenital Zika Syndrome: Qualitative findings from a feasibility study in Brazil

“…cognitive, physical, visual) that have a long-term influence on their health and development [2]. Families play an important role in care for these children, and caregivers of children with disabilities often experience high levels of stress, anxiety, depression, physical exhaustion, and discrimination [3][4][5][6][7][8]. These experiences contribute to decreased quality of life compared to caregivers of non-disabled children, and may result in reduced effectiveness of parenting [9,10].…”