'I Waited for It until Forever': Community Barriers to Accessing Intellectual Disability Services for Children and Their Families in Cape Town, South Africa.

Siyabulela Mkabile,Leslie Swartz

doi:10.3390/ijerph17228504

Abstract

Background: Intellectual disability is more common in low- and middle-income countries than in high-income countries. Stigma and discrimination have contributed to barriers to people with intellectual disability accessing healthcare. As part of a larger study on caregiving of children with intellectual disability in urban Cape Town, South Africa, we interviewed a sub-group of families who had never used the intellectual disability services available to them, or who had stopped using them. Methods: We employed a qualitative research design and conducted semi-structured interviews to explore the views and perspectives of parents and caregivers of children with intellectual disability who are not using specialised hospital services. We developed an interview guide to help explore caregivers’ and parents’ views. Results: Results revealed that caregivers and parents of children with intellectual disability did not use the intellectual disability service due to financial difficulties, fragile care networks and opportunity costs, community stigma and lack of safety, lack of faith in services and powerlessness at effecting changes and self-stigmatisation. Conclusion: Current findings highlight a need for increased intervention at community level and collaboration with community-based projects to facilitate access to services, and engagement with broader issues of social exclusion.

Highlights

While significant improvements have been observed in the health system in South Africa since the beginning of democracy, it appears the majority of vulnerable South Africans from low socio-economic backgrounds are still struggling as a result of structural disadvantage
Participants gave a number of reasons as to why they are not using the intellectual disabilities (ID) services close to them
We present data on each of these in turn

Summary

Introduction

While significant improvements have been observed in the health system in South Africa since the beginning of democracy, it appears the majority of vulnerable South Africans from low socio-economic backgrounds are still struggling as a result of structural disadvantage. For people with intellectual disabilities (ID), access to specialised intellectual disability services for their basic healthcare needs is still a major challenge because of structural barriers further complicated by disability. According to the World Health Organization, intellectual disability (ID) is defined as follows: “Intellectual disability means a significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in a reduced ability to cope independently (impaired social functioning), and begins before adulthood, with a lasting effect on development. As part of a larger study on caregiving of children with intellectual disability in urban Cape Town, South Africa, we interviewed a sub-group of families who had never used the intellectual disability services available to them, or who had stopped using them

Objectives

Methods

Results

Discussion

Conclusion