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While few caregivers reported positive experiences of service provision and access of services for their children, they had many suggestions and recommendations to facilitate improvement of service provision and access, and the general management of the ASD situation in South Africa.

In response to the challenges caregivers experienced in locating and accessing appropriate services, they highlighted the need for the development of a greater number and variety of services. They advocated the need for a more comprehensive treatment approach where a team of professionals could provide for the child’s needs holistically rather than referring children to numerous institutions and professionals for a variety of services. This would help to reduce the number of appointments and might improve the efficacy of intervention.

Caregivers emphasised the need for the setting up of a greater number of schools in their home communities which would help to limit the transport costs incurred in accessing these schools. They also claimed that the presence of such services may help to facilitate awareness of ASD in the communities. Crèche and high school facilities appear to be the most limited, leaving the caregivers with few options beside home schooling or early termination of schooling. These schools need to be developed to offer specialist support in educating children with ASD.

Caregivers noted that the experience and expertise of individual health care practitioners and service providers had made the difference in arriving at an appropriate diagnosis. Many complaints of misdiagnosis, conflicting diagnoses, and mistrust of doctors’ opinions due to their inadequate knowledge and experience were fielded. They called for training of the

general practitioners, teachers, day care mothers, nurses and therapists who tended to be the first point of contact, to make them aware of the condition ASD, and enable them to make informed choices as to where and how to refer these children on to specialised services. This recommendation is supported by Mubaiwa who suggested the need for inclusion of adequate training in neurodevelopmental conditions at an undergraduate level for medical and allied health practitioners and community health care workers.33 Caregivers highlighted the need for expert training and specialisation of professionals in the field. They also called for exploration of different intervention techniques available abroad and the implementation of these

interventions in the South African context.

Caregivers pointed out the inefficiency of the referral procedure and the importance of referring to the correct practitioner early on. The caregivers recommended that, besides improving awareness and knowledge of professionals, a specialist directory of experts in the field should be compiled to direct both professionals and caregivers to the correct service providers.

Caregivers noted that therapy, medication and appropriate schooling have improved their children’s functionality significantly, so access to regular services must be maintained and made available to all, regardless of their means.

Caregivers did find, to a certain extent, that having access to medical aid helped to support access to services and gave them greater opportunities to access treatment. However, they did note that living costs, educational costs and medical costs together, placed a significant burden on caregivers and families. They felt that government should get involved in subsidising certain schools and services in line with international governments.

The need for marketing and public awareness also came through strongly. Caregivers noted the important role reading books, searching on the internet, watching programmes on television etc. had played in developing their insight into their child’s problems. They recommended that information needs to be made more widely available and publicised more openly to facilitate awareness and knowledge in the general community. This would help to break the stigma and misconceptions surrounding the behaviour of children with ASD, and

possibly improve the level of support and understanding of caregivers by their families and communities. While caregivers found general information available on what ASD, they would like more access to information on the different professions and what services they can

provide, and the latest advances made in research into different interventions. Again the need for setting up a specialist directory, which could be easily accessed by both caregivers and professionals was emphasised. This would help to facilitate better networking and more efficient referral to and between professionals.

Caregivers commented on their appreciation of education sessions and workshops held by professionals for caregivers. They found that discussing their experiences with professionals and learning techniques empowered them to understand their children and care for them better. They still asked for more of this kind of input.

Caregivers who had attended support groups and found counsel with supportive doctors, therapists and teachers, found these services helpful. Support groups helped them to speak about and share their experiences with people who understood them. These groups helped to create a feeling of universality where the caregivers felt they were not alone. Shared problem solving and networking were other benefits of these groups.