Partnership in practice: what parents of a disabled child want from a generic health professional in Australia

Authors

  • Jennifer Fereday RN RM Dip App Sci (Nursing) BN MEd (Mgt) PhD,

    1. Clinical Nurse/Midwife Consultant – Research & Practice Development, Department of Nursing & Midwifery Research & Practice Development, Children, Youth and Women’s Health Service, North Adelaide, SA, Australia
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  • Candice Oster BA (Hons) PhD,

    1. Visiting Research Fellow, School of Psychology, University of Adelaide, North Terrace, Adelaide, SA, Australia
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  • Philip Darbyshire RNMH RSCN Dip (Lond) RNT MN PhD

    1. Director, Philip Darbyshire Consulting Adjunct Professor, School of Nursing & Midwifery, University of Western Sydney, Sydney, NSW, Australia, Honorary Professor, School of Health Science, University of Swansea, Swansea, UK, Visiting Professor, University of Bournemouth, Bournemouth, UK
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Dr Jennifer Fereday
Clinical Nurse/Midwife Consultant – Research & Practice Development
Department of Nursing & Midwifery Research & Practice Development
Children, Youth and Women’s Health Service
72 King William Rd
North Adelaide, SA 5006, Australia
E-mail: jennifer.fereday@health.sa.gov.au

Abstract

Despite the love that exists between children with disabilities and their parents and the positive contribution that children with a disability make to families and communities, caring for a child with a disability can be difficult and demanding for parents, carers and the family. Their interaction with the many and varied health professionals they encounter can serve to either ameliorate or exacerbate these difficulties. In this paper we report on a qualitative needs analysis undertaken as part of a project to develop disability awareness resources for generic health professionals (GHP). Data were collected through focus groups (= 5) and individual interviews (= 7) with 34 parents/carers and was analysed using a process of thematic analysis. ‘Partnership’ was identified as the overarching theme that answers the question ‘What do parents/carers want from a GHP?’ Three further themes were identified that together tell the partnership ‘story’. These are: ‘The GHP–parent partnership’, ‘Qualities of a GHP’, and ‘The role of advocacy in the GHP-parent partnership’. Implications are presented that highlight the importance of advocacy in GHP–parent partnerships and suggest improvements in GHP education and preparation.

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