title: ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners.
abstract: Two per cent of people in Australia have intellectual disability and the adults in this population often have poor health status. This poor health can be partly attributed to communication difficulties encountered by people with intellectual disability and also health professionals in consultation settings. The design and development processes of an educational intervention to improve communication between patients, general practitioners (GPs) and also advocates in a population of adults with intellectual disability are described. The design process was collaborative and involved adults with intellectual disability, GPs, parents, support workers and other professionals. It was a nine-step development process and led to the final communication tool package, the ask (advocacy skills kit) 5-year health diary and educational session. As a result of the collaborative design and development processes, this diary included qualities not found in most other medical record keeping systems: visual appeal, advice on how to be a health advocate, utility for a range of users, privacy, portability and sufficient capacity to record personal patient information which enhanced communication between doctor, patient and advocate. It is proving to be very popular. Clear implications were found for applying established criteria and incorporating the needs of users in the design of educational interventions in the intellectually disabled population. Health promotion tools aiming to improve the current poor health status of adults with intellectual disability should be developed further.
authors.affiliation: Queensland Centre for Intellectual and Developmental Disability, The University of Queensland, Mater Hospital, Woolloongabba, Queensland 4101, Australia. n.lennox@sph.uq.edu.au
authors.forename: Nicholas
authors.initials: N
authors.lastname: Lennox
authors.forename: Miriam
authors.initials: M
authors.lastname: Taylor
authors.forename: Therese
authors.initials: T
authors.lastname: Rey-Conde
authors.forename: Chris
authors.initials: C
authors.lastname: Bain
authors.forename: Frances M
authors.initials: FM
authors.lastname: Boyle
authors.forename: David M
authors.initials: DM
authors.lastname: Purdie
mesh_terms: D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D010344:Patient Advocacy / Q000193:education; D010353:Patient Education as Topic / Q000379:methods; D019989:Persons with Intellectual Disabilities; D010817:Physician-Patient Relations; D010821:Physicians, Family / Q000193:education*