Disability facilitators’ views of their work with children with disability in South Africa^*

Background

Children in under resourced areas can be disadvantaged in terms of education and health care, and can experience social hardship. Within South Africa, social, health and educational support for ‘at risk’ children is provided by Child and Youth Care Workers. One of the organisations that provides localised and contextualised support for such children is the National Association of Child Care Workers (NACCW). This organisation has a network of Child and Youth Care Workers who work in their local communities. The organisation provides training for these workers, some of whom receive additional training to become Disability Facilitators. Disability Facilitators work within their local communities to provide health, education and social support for children with disability and their families. Disability facilitators also provide advice and support to their local Child and Youth Care Worker team members about disability issues and concerns they have for individual children on their case-loads. Such an approach has the potential to offer insights to healthcare professionals working with children with disability elsewhere.

Purpose

This study explored the views of Disability Facilitators about their work with children/youth with disability and their families, and within their local Child and Youth Care Worker Team.

Method

Disability Facilitators were provided with information about the study by NACCW and invited to take part. They provided written, informed consent to become a study participant. Two members of the research team visited each participant at their work site in their local community to conduct semi-structured individual interviews. One researcher asked questions of the participant, and the other researcher made notes (for example about the community context, the worksite and its surroundings, size of the participant’s care-worker team, and the nature of projects that community members were engaged in such as a vegetable garden or provision of food for children). Interviews were conducted over a period of about five weeks, with the two research team members travelling about 3000 km to gather the data. Interviews were transcribed verbatim. Via reading and re-reading of the data, we identified and categorised common ideas or concepts within the data. We tabulated these, together with supporting quotes, and then arranged the ideas and concepts into themes during numerous discussions among the whole research team.

Results

Data were gathered from 14 participants (aged 25–54 years, two of whom were males). The longest serving participant had been a Disability Facilitator for nine years and the newest for six months. Five of the participants had undertaken diploma-level study at a tertiary institution before training as a Child and Youth Care Worker and then as a Disability Facilitator. Participants were representative of at least three of the main indigenous ethnic groups in South Africa, including the two most populous.

Two themes of (1) Empowerment and (2) Burden of Responsibility were identified during analysis of the data. The theme of Empowerment encapsulated how participants viewed themselves as advocates for children and youth as well as community role models to address negative perceptions about disability. They viewed disability more widely than as it relates to impaired body function and structure. They worked in a holistic way together with other professionals and community services to care for the health and well-being of children. For example, they were advocates about disability issues within the child’s local school and community police, and with health and social services to access appropriate assistance and support. The second theme, Burden of Responsibility, suggested that they perceived their work as motivating and worthwhile. However, they identified burdensome challenges to undertaking the role. Examples they provided were coping with, and being able to support, dysfunctional families, limited access to resources that would assist children to get around in their communities or access education, slow response to their requests (for example for assistive equipment or access to appropriate governmental grants), and being a young leader for disability issues within a team of more experienced or older Child and Youth Care Workers. They recommended further training for themselves around how to promote positive relationships within families, and that their team members receive at least a measure of training around disability issues.

Conclusions

Disability facilitators, through their community advocacy work in addressing cultural and social perceptions about children and youth with disability, and their care and support for children and their families, supported the wellbeing and participation of children within society. This study has demonstrated the worth of the role of the Disability facilitator in child and youth care work in South Africa.

Implications

Disability, when viewed more widely than as it relates to impaired body structure and function, provides a relevant motive to provide holistic care and services for vulnerable children/youth. Such holistic healthcare provision could empower not only individuals, but also their communities, to build knowledge and resources – thus providing a supportive and facilitating environment for all the citizens. An approach such as this could be usefully adopted for health and social service delivery in other countries.

Acknowledgements

We thank all of our participants for their interest in the project, for their time, and their enthusiasm and insights about their work. We also wish to acknowledge the National Association of Child Care Workers (NACCW) of South Africa who supported this project.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This study was partly supported by a Research and Study Grant to the first author from the University of Otago, New Zealand.