Browsing by Author "Harty Michal"

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    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
    (2022) Nyoni, Joachim; Mckenzie, Judith; Harty Michal
    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.
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    Caregivers? perceptions of caregiver burden, quality of life and support needs in caring for a child with cerebral palsy with feeding and/or swallowing difficulties within the context of the Western Cape, South Africa
    (2023) Le Roux, Raquel; Norman, Vivienne; Harty Michal
    Background: Children with cerebral palsy often present with feeding and/or swallowing difficulties and are reliant on family caregivers for long-term care, particularly in resource-constrained countries like South Africa. This can result in caregiver burden and decreased quality of life for both caregiver and child. The planning and implementation of supportive services and interventions depend on the availability of knowledge relating to caregivers' perceptions of burden and the impact on their quality of life, as well as their specific support needs. Research Aim: To describe caregivers' perceptions of caregiver burden, quality of life and support needs in caring for a child with cerebral palsy who has feeding and/or swallowing difficulties, in the context of the Western Cape, South Africa. Methods: A qualitative, descriptive, case study design was utilised to describe the perceptions of eight mothers caring for children with cerebral palsy who have feeding and/or swallowing difficulties, who were between the ages of two and eight years (mean=4.63). Participants, aged between 25 and 42 years (mean = 29.25), were recruited from a hospital's cerebral palsy clinic. Semi-structured telephonic interviews, using an interview guide of seven open-ended questions and probes, were conducted and recorded. Four interviews were conducted in English and the remaining four were conducted in isiXhosa. To ensure trustworthiness and rigor, the study used various measures such as pilot testing, informal member checking, verbatim transcription, re- evaluation of data, triangulation of analysts and sources, debriefing and reflexivity. The data were analysed using thematic analysis to generate themes and sub-themes. Results: Caregiver perceptions were captured in seven key themes, namely: ‘Worry'; ‘Feeding is everything'; ‘Identified support needs'; ‘What helps me cope?'; ‘Cost of caregiving'; ‘Hopeful caregiving'; and ‘Shortfalls of healthcare system and society'. The themes reflect the stress and anxiety of caregiving, the centrality of feeding, specific needs for support, resilience and coping, multifaceted strain, hope and positivity, and failures of healthcare and society in supporting caregivers. Conclusions: The results of this study give voice to caregivers of children with cerebral palsy who have feeding and/or swallowing difficulties, in South Africa. The caregivers highlighted challenges they face in terms of the burden of caregiving and the impact on their quality of life. These caregivers also described the support that was helpful and support that is needed. This knowledge contributes to a broader knowledge base and informs the development of contextually relevant support services for caregivers of children with cerebral palsy who have feeding and/or swallowing difficulties in the Western Cape – and similar contexts – to improve the caregiving experience and quality of life outcomes for caregivers and their children.