Experiences of the caregivers on the healthcare and psychosocial services available for cerebral palsy children in Mangochi district in Malawi

Felistas Chiundira¹*, Anania Matenje², Ruth Masese², Jim Mtambo³, Patrick Mapulanga³, Towera
Maleta⁴, Chifundo Manong’a², Beverly Laher⁵, Winnie Chilemba⁶

1. Child Health Nursing Department, School of Nursing, Kamuzu University of Health Sciences, Lilongwe
2. Mangochi District Hospital, Ministry of Health, Mangochi
3. Library Department, Kamuzu University of Health Sciences, Lilongwe
4. Capacity Building for Health Profession Education and Research Project, Kamuzu University of Health Sciences, Blantyre
5. School of Global and Public Health, Kamuzu University of Health Sciences, Lilongwe
6. Community Health Nursing Department, School of Nursing, Kamuzu University of Health Sciences, Lilongwe

*Corresponding Author: Felistas Chiundira; E-mail: fchiundira@kuhes.ac.mw

Abstract
Background
Children with cerebral palsy require multidisciplinary and holistic care to manage their medical needs and maximise their developmental and educational potential. Exploring experiences of caregivers on healthcare and psychosocial services available for children with cerebral palsy is key in addressing gaps existing in provision of quality health care and psychosocial services both at community and hospital settings.
Methods
We conducted a qualitative exploratory descriptive study. Twelve caregivers of children with cerebral palsy were interviewed face-to face using interview guides at Mangochi district. Twelve caregivers of children with cerebral palsy were interviewed face-to-face using interview guides at Mangochi district. Purposive and snowball sampling were used to select the study participants.
Results
The findings of the study showed that some of the participants received inadequate information related to the etiology and prognosis of cerebral palsy, alternative treatments, and information related to childcare at home. There was also a lack of follow-up and home visits by health care workers. The majority of participants received informal psychosocial support from their relatives and friends. However, there was lack of formal psychosocial services, such as counselling services, unavailability of support groups, and lack of assistive devices. Challenges encountered by children with cerebral palsy and their caregivers were related to inadequate finances, transport challenges, and lack of basic needs, which resulted in the inability to provide necessities to children with cerebral palsy and inability to take their children to the hospital for regular physiotherapy services. In addition, caregivers face physical strain and burden during care.
Conclusion
The study found that there was inadequate provision of health care and psychosocial services to children with cerebral palsy. The study recommends the provision of comprehensive cerebral palsy information to caregivers, the formation of support groups, conducting outreach clinics and home visits to children with cerebral palsy, and provision of assistive ambulation devices by healthcare professionals and the department of social welfare.

Key words: cerebral palsy, experiences of caregivers