“It means you are grounded” – caregivers’ perspectives on the rehabilitation of children with neurodisability in Malawi

Abstract

Purpose: Rates of childhood disability are estimated to be high in African settings; however, services to provide information and support are limited. This study aims to explore perspectives and experiences of caregivers of children with disabilities (CWD) from acquired brain injury to inform the development of training packages for health-workers (HW) in hospital settings. Methods: The study was conducted in a tertiary hospital using qualitative methods. Fourteen in-depth interviews (IDIs) were conducted with parents/carers (PC), and 10 IDIs and 4 focus-group discussions (FGDs) with HW. Data were audio-recorded, transcribed, translated and analysed using thematic approaches. Results: HWs and PCs held varying perspectives on aetiology and prognosis for CWD. HWs raised concerns about impact on families, risks of neglect and abuse. Barriers to care and support included prioritisation of acute illness, lack of HW knowledge and confidence, stigma, poor communication, focus on physical disability, and poor availability of services. Among ideas for improvement, good communication and counselling was seen as a priority but not often achieved. Conclusion: A range of family, health service and wider contextual factors affect care for CWD. Training for HW should emphasise disability rights, access to services, a range of disabilities and specific training on counselling.

Implications for Rehabilitation

• To create good training programmes for workers who manage children with neurodisability, workers’ views on their training needs, as well parents’ views of what feel they need to know most, must be taken into account.

• The need for training regarding communication skills is a priority for health-workers (HW), who manage children with neurodisability in Malawi and confidence in this area is likely to be vital in providing support for these families.

• Disability rights and inclusion should be imperative in any training programme for managing children with neurodisability in hospital settings.

• Even in low-resource settings such as Malawi, it is vital that the links between hospital management and the limited resources in the community are updated and maintained.

• Africa
• carers
• child
• developing countries
• disability
• qualitative
• rehabilitation

Acknowledgements

The authors would like to thank all the families and health workers involved in the study, as well as QECH Paediatrics Department and the Malawi Liverpool Wellcome Trust Qualitative research team.

Declaration of interest

This research was funded by the Sir Halley Stewart Charitable Trust and the University of Liverpool. M.G. gratefully acknowledges the Academy of Medical Sciences “Clinical Lecturer Starter Grant” supported by the Wellcome Trust, British Heart Foundation and Arthritis Research UK (/2011Dec/round6) as well as a WellcomeTrust Biosciences fellowship (/Z/11/Z). This provided the support for Dr. Gladstone whilst supervising and conducting this research in Malawi. The authors declare no conflicts of interests.