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

Bente van der Meijden, AIGT, Family Medicine Department KUHES, Malawi

Cerebral Palsy is the most common childhood disability in LMIC.[i] Though 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 caregivers due late diagnosis, stigmatization and the many challenges that these families are confronted with on social and economical level.[iii]

In Malawi very little is known of the burden of children and their caregivers and no specific care is given to these patients. With this study we aim to get a better understanding of the current situation of 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 caregivers with qualitative semi-structured focus group interviews
2. The quality of life of children with cerebral palsy and their caregivers 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 pediatrics. 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 caregivers: a cross sectional study in a rehabilitation center Khartoem-Sudan (2014-2015), Journal of Neurosciences in Rural practice 2016. 7(3): 355-361