title: Partnership in practice: what parents of a disabled child want from a generic health professional in Australia.
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 (n = 5) and individual interviews (n = 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.
authors.affiliation: 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. jennifer.fereday@health.sa.gov.au
authors.forename: Jennifer
authors.initials: J
authors.lastname: Fereday
authors.forename: Candice
authors.initials: C
authors.lastname: Oster
authors.forename: Philip
authors.initials: P
authors.lastname: Darbyshire
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D002648:Child; D002675:Child, Preschool; D003254:Consumer Advocacy; D003299:Cooperative Behavior; D006233:Persons with Disabilities / Q000534:rehabilitation*; D005260:Female; D017144:Focus Groups; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D010287:Parent-Child Relations; D005791:Patient Care; D011320:Primary Health Care / Q000458:organization & administration*; D036301:Qualitative Research; D013021:South Australia; D013637:Tape Recording; D035502:Trust; D055815:Young Adult