E. Anderson1
1World Hope International, Enable the Children, Freetown, Sierra Leone
Background: The Enable the Children (ETC) programme provides physical therapy, occupational therapy, pastoral and family support, and financial support to families and caregivers in order to empower families to manage their child’s disability.
Cultural beliefs in Sierra Leone lead many mothers to place blame upon themselves when a child is born with a disability. The child can often be seen as a curse and not accepted by the family or wider community. ETC works within the communities the children live in to try to reduce the stigma of disability, sensitising communities, in order for the child to be accepted and cared for in their community. There is limited information and evidence as to the experiences of caregivers of children with disabilities in Sierra Leone, and there is no evidence on the impact physiotherapy can have for these caregivers.
Cultural beliefs in Sierra Leone lead many mothers to place blame upon themselves when a child is born with a disability. The child can often be seen as a curse and not accepted by the family or wider community. ETC works within the communities the children live in to try to reduce the stigma of disability, sensitising communities, in order for the child to be accepted and cared for in their community. There is limited information and evidence as to the experiences of caregivers of children with disabilities in Sierra Leone, and there is no evidence on the impact physiotherapy can have for these caregivers.
Purpose: The purpose of this study is to understand the experiences of caregivers of children with disability. This research will help to give further indication as to how to support children with disabilities, which can then be shared with stakeholders.
Methods: The study adopted a qualitative, interpretivist and theological approach. 39 caregivers were recruited to complete 6 different focus groups via a convenience sampling method. Semi-Structured focus groups were used, which lasted between 60-90 minutes each and were completed by participants on two occasions between 12 and 14 months apart. The drop out rate was 5.
Results: On the initial FGDs participants described feeling discouraged and tired due to financial hardship and facing social stigma. Three main themes from the first focus groups were, Discrimination, Shame, and Community breakdown.
On follow up FGDs, participants expressed how their child's condition had changed, and many described improvement. The three main themes from this were: A feeling of hope, physical improvement, Community sensitisation.
On follow up FGDs, participants expressed how their child's condition had changed, and many described improvement. The three main themes from this were: A feeling of hope, physical improvement, Community sensitisation.
Conclusions: The conclusion of this study showed that there are many different aspects of an intervention that are important when working with children living with disabilities, and enabling them to engage in a rehabilitation programme. Prior to engaging in the physiotherapy programme a lot of participants felt like their community did not accept them or their child due to them having a disability, however with appropriate sensitisation and education to the parents and the community, in follow up FGDs participants described feeling supported and that they could now take their child to community parties, to church and that they were welcome to play with other children. This shows that engaging the community is an important aspect when working with this population. Children with disabilities and their families are also at a higher risk of experiencing financial hardship and often are single caregiver households.
Implications: Any programme needs to consider the role stigma plays and tackle this prior to expecting engagement in a physical therapy programme. There needs to be financial support for this group. Currently there are not enough government services that are accessible to this population group, and the services that are there are under-utilised.
Funding acknowledgements: Nil
Keywords:
Disability Stigma
Children Living with Disabilities
Community Engagement
Disability Stigma
Children Living with Disabilities
Community Engagement
Topics:
Disability & rehabilitation
Paediatrics
Globalisation: health systems, policies & strategies
Disability & rehabilitation
Paediatrics
Globalisation: health systems, policies & strategies
Did this work require ethics approval? Yes
Institution: Sierra Leone Government
Committee: Sierra Leone Ethics Committee
Ethics number: 67967
All authors, affiliations and abstracts have been published as submitted.
