Measuring quality of life for children with Cerebral Palsy and their caregivers

Bente van der Meijden 2022

Bente van der Meijden, MD-GH, Family Medicine Department KUHES, Malawi

Cerebral palsy is the most common childhood disability in low- and middle-income countries.[i] Although presentation varies, most children will present with multiple comorbidities and they have a high risk of infections and malnutrition.[ii] Previous studies show that quality of life is often compromised for these children and their carers due to late diagnosis, stigmatisation and the many challenges that these families face on a social and economic level.[iii]

In Malawi, very little is known about the burden on children and their carers, and no specific care is provided to these patients. With this study, we aim to gain a better understanding of the current situation regarding cerebral palsy in Mangochi, Malawi. We will focus on two different areas:

1. The knowledge and attitudes of healthcare workers and community stakeholders towards children with cerebral palsy and their carers, using qualitative semi-structured focus group interviews
2. The quality of life of children with cerebral palsy and their carers and barriers and facilitators associated with quality of life with a mixed-method study.

[i] Tataryn et al., Childhood disability in Malawi: a population-based assessment using the key informant method. BMC paediatrics. 2017.

[ii] Eunson, P. Aetiology and epidemiology of cerebral palsy. Paediatrics and Child Health, 2012. 22(9), 361–366.

[iii] F.M.S. Mohammed et al., Quality of life of cerebral palsy patients and their carers: a cross-sectional study in a rehabilitation centre in Khartoum, Sudan (2014–2015), Journal of Neurosciences in Rural Practice 2016. 7(3): 355–361