Experiences of caregivers on healthcare and psychsocial services available for Celebral Palsy children in Mangochi District
Kamuzu University of Health Sciences under the CHEER Project
This was a cross sectional phenomenological qualitative study. Children with Cerebral Palsy (CP) require multidisciplinary and holistic care in order to comprehensively manage their medical needs as well as maximize their developmental and educational potential. 1. In addition, many children with Cerebral Palsy have complex limitations in self-care functions which renders them completely reliant on their caregivers. 2. The provision of such care may therefore be detrimental and stressful to both the physical health and the psychological well-being of parents of children with Cerebral Palsy3. 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. The study utilized qualitative research design which was cross sectional and phenomenological in nature. The study was conducted at Mangochi District Hospital and targeted caregivers of children with Cerebral Palsy. The duration of the study was 10 months; between December 2021 to September 2022. Convenient sampling was used with a sample size of 12 caregivers. Data collection was done using face to face in depth interviews with the aid of interview guide. Tape recorder was used and the information provided by the participants was transcribed. Data was presented in themes and subthemes. Study findings: The findings of the study showed that majority of participants reported that their children received good physiotherapy services, health care workers were friendly and welcoming and they had short waiting time to receive the services. However, some of the participants received inadequate information related to etiology of CP, prognosis of CP, alternative treatments and on child care at home. There was also lack of follow up of CP children and lack of home visits by health care workers. Majority of participants received informal psychosocial support from their relatives and friends. However, majority of formal psychosocial services were lacking for example there was lack of counselling services, no visits by counsellors or social workers, unavailability of support groups and lack of assistive devices at home. Challenges which caregivers encountered were related to financial support resulting in their inability to meet basic needs for CP children and transport challenges to take their children to the hospital for monthly physiotherapy services. The study recommends that health care workers should be trained in order to provide evidence based CP information and psychosocial counselling services. CP children and their caregivers should also be followed up by community healthcare workers for support and continuity of services. There is need to engage non-governmental organization existing within Mangochi district to support caregivers in terms of basic needs and psychosocial support. All in all, there is need for multisectoral collaboration in order to manage CP children comprehensively. The study findings has been sent to COMREC, has been disseminated at RDC conference and will be disseminated at MOH conference and other upcoming national and international conferences, stakeholder and professional review meetings, seminars. Soft copies of research documents have been made available to Ministry of Health, Kamuzu University of Health Sciences and Mangochi DHO. The study findings will also be published in paediatric journals.