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Caring for Carers: How formal support services help parent-carers maintain their health and wellbeing
Thesis   Open access

Caring for Carers: How formal support services help parent-carers maintain their health and wellbeing

Cynthia Teo
University of the Sunshine Coast, Queensland
Master of Science, University of the Sunshine Coast
2018
DOI:
https://doi.org/10.25907/00328
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Abstract

respite disability support worker family-centred person-centred challenging behaviours
Background: Most children with significant developmental disabilities are cared for by their parents at home, and their caregiving responsibilities can last the lifetime of the child. Many parent-carers need support to continue with their caregiving responsibilities indefinitely. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer wellbeing. Many studies have also mainly focused on what has not been working in respite interventions, and there is no known research on disability support staff who work with families with children with significant intellectual and/or developmental disabilities in the home environment.Method: Using a qualitative approach, underpinned by an Appreciative Inquiry philosophy, three focus groups were conducted to explore the views of parent-carers on how formal support services have helped them maintain their health and wellbeing. Preliminary findings then informed the questions used in individual interviews with eight disability support workers who work with children with intellectual and/or developmental disabilities. Data were analysed using thematic analysis. Findings: Flexibility and adaptability of parents and service providers were found to contribute to the positive perceptions of formal support services. When disability support providers work in the homes of their clients, parents expect and prefer a combination of a client- and family-centred approach. Better communication and collaboration between service providers and users, and clearer aims and definition for support services and support workers emerged as what could be improved in service provision; while parent empowerment and professionalising the role of support work emerged as dreams for the future. Conclusion: The findings generated offer policy-makers and support service providers insight into how their services might be improved to better meet the needs of families, including embracing a person- and family-centred approach to respite services, clearer definition and communication of the scope of respite services, and potentially recognising disability support work as a para-profession.

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