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 Rehabilitation

• Caring 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.

• Birth asphyxia
• health-seeking
• impairment
• infant
• maternal experience
• neonatal encephalopathy
• Uganda

Acknowledgements

We would like to acknowledge the mothers for their participation and Mulago hospital for their on-going support of the study. Special thanks to the ABAaNA study team for their support, particularly Margaret Sewegaba and Margaret Musoke for their invaluable assistance with mobilising study participants and also Sonia Kim for her inputs.

Declaration of interest

The study was funded by a Wellcome Trust training fellowship (Clinical PhD Programme in International Health Wellcome Trust/London School of Hygiene and Tropical Medicine) and an Innovative Research Grant awarded by the Research Foundation of Cerebral Palsy Alliance, Australia, both to CT. The time of SN, GS and JS was jointly funded by the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement. The authors declare no conflict of interest.