A participatory action research project on family needs: experiences of formal and informal support services available among Zambian families of children with autism spectrum disorders

Nyoni, Joachim

A participatory action research project on family needs: experiences of formal and informal support services available among Zambian families of children with autism spectrum disorders

Doctoral Thesis

2022

Abstract

Globally, there has been an escalation in the number of children diagnosed with Autism Spectrum Disorders (ASD). Despite the high prevalence rates, formal and informal support services for children with ASD in Lower and Middle-Income Countries are inadequate due to several challenges. The aim of the study was to understand the experiences of parents with formal and informal support services for families of children with ASD in Zambia and explores ways to address support needs by empowering parents using a PAR approach. The study employed a qualitative Participatory Action Research (PAR) design. A total of 76 participants were purposively sampled from both rural and urban districts of the Lusaka province of Zambia. The study was divided into two phases with phase one focusing on an inquiry into the nature of the problem while phase two was planned for action. In Phase one, a total of 73 participants were recruited— 50 community members and 23 professionals. Parents participated in nine focus group discussions (FGD) while 23 professionals were involved insemistructured interviews. Phase two activities included the five-action cycles in which 17 parents participated and formed a parent-led supported group. These parents worked together for six months to address the identified barriers to ASD. The five-action cycles generated were as follows; action cycle one—forming a parent-led support group; action cycle two—being involved in ASD awareness campaigns to higher institutions of learning; action cycle three— capacity building on how to educate a child with ASD; action cycle four—, being involved in ASD awareness in rural areas; action cycle five—publishing their stories in print media. Verbatim transcription was used and data was analysed thematically. Themes were distilled through interpretive description. The key findings in the study reveal that parents face many barriers to access formal and informal services. These barriers were compounded by scarcity of knowledge about ASD at parent, professional, and community levels. ASD diagnosis and treatment included exploring religious, traditional and western medical treatments. The study found that the ASD diagnostic tools used to confirm ASD diagnosis were not uniform, and often used by poorly trained professionals. Parent-initiated support groups appear to be a positive mechanism to promote ASD awareness in both rural and urban settings. Through a parent-led support group, participants gained empowerment skills as well as a better understanding of barriers to their children unmet needs. Further studies need to extend our understanding of how parents' involvement in PAR methodologies can be used to empower and shape the nature of services that they require in Low- and Middle-income Countries.

Keywords

psychology

Reference:

Collections

PhD / Doctoral

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