Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. CBM supported a research project to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called “Getting to know cerebral palsy” in Ghana.
“Getting to know cerebral palsy” is a training resource for facilitators, parents, caregivers, and persons with cerebral palsy. It aims to increase knowledge and skills in caring for a child with cerebral palsy. It promotes a participatory learning approach with an emphasis on working with groups and the empowerment of parents and caregivers.
- “Getting to known cerebral palsy”, delivered through caregiver support groups and home visits, was associated with positive changes in the lives of caregivers. Quality of life scores of the care givers improved by 30% with implementation of the community/home based approach.
- There was a significant improvement in caregiver reported knowledge and confidence in taking care of their child with cerebral palsy. Caregiver attitudes towards the children improved as understanding of the condition increased; this often resulted in greater patience in caregiving. The self-esteem and dignity of caregivers increased as they saw that their child and themselves were valued. Understanding that ‘they were not on their own’ was key to affecting this change.
- At the baseline 61 % of caregiver were unaware of the existence of the Disability Common Fund, and only one family had accessed the fund. At the end of the project awareness levels increased, but difficulties remained in accessing the Fund.
- The case studies illustrated the fluidity of family situations, and the intersectionality of poverty, disability, and the gendered nature of caregiving.
- Child malnutrition and difficulties with feeding and drinking were identified as major issues at baseline. There was a significant improvement in child feeding and drinking scores from baseline to endline. Poverty limited the variety of nutritious food available.
- The caregiver’s perception of their child’s health improved from baseline to follow up.
- 56% of children were provided with an assistive device through the training programme, and this resulted in several benefits including improved social inclusion.
- School attendance for children with cerebral palsy in this study was low at baseline (29%) and there was some improvement at endline (39% attendance). The main reason for non-attendance at school was that the caregiver assumed the child could not attend or the school refused them because of their disability and there was improvement on this at endline.
- The support group can serve to reduce the sense of social isolation and exclusion of caregivers. It can offer a platform to provide psychosocial support to caregivers, and a safe place to share experiences.
- The collective sharing of experiences can help to address stigma, and facilitate opportunities for peer learning, encouragement, and hope for caregivers.
- The overall cost of the programme indicates that this is a model which is scalable, with some adaptations for rural and urban settings and a review of the role of facilitator.
- The report provides recommendations at policy, programme and technical level and suggests further research as well as improvements on the “Getting to know cerebral palsy” manual/programme based on the learnings in this project.
- Currently an amendment to the manual for early intervention is being developed which includes the situation of children below the age of 2.