Open Access Study protocol

Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial

Nicholas Lennox1*, Robert Ware12, Suzanne Carrington3, Michael O’Callaghan1, Gail Williams2, Lyn McPherson1 and Chris Bain14

Author Affiliations

1 Queensland Centre for Intellectual and Developmental Disability, The University of Queensland, Mater Hospital, Raymond Terrace, South Brisbane Qld 4101, Australia

2 School of Population Health, The University of Queensland, Herston Qld 4006, Australia

3 School of Learning & Professional Studies, Queensland University of Technology, Victoria Park Road, Kelvin Grove Qld 4059, Australia

4 Genetics and Population Health Division, Queensland Institute of Medical Research, Brisbane, Queensland, Australia

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BMC Public Health 2012, 12:750  doi:10.1186/1471-2458-12-750

Published: 7 September 2012

Abstract

Background

Adolescents with intellectual disability often have poor health and healthcare. This is partly as a consequence of poor communication and recall difficulties, and the possible loss of specialised paediatric services.

Methods/Design

A cluster randomised trial was conducted with adolescents with intellectual disability to investigate a health intervention package to enhance interactions among adolescents with intellectual disability, their parents/carers, and general practitioners (GPs). The trial took place in Queensland, Australia, between February 2007 and September 2010. The intervention package was designed to improve communication with health professionals and families’ organisation of health information, and to increase clinical activities beneficial to improved health outcomes. It consisted of the Comprehensive Health Assessment Program (CHAP), a one-off health check, and the Ask Health Diary, designed for on-going use. Participants were drawn from Special Education Schools and Special Education Units. The education component of the intervention was delivered as part of the school curriculum. Educators were surveyed at baseline and followed-up four months later. Carers were surveyed at baseline and after 26 months. Evidence of health promotion, disease prevention and case-finding activities were extracted from GPs clinical records. Qualitative interviews of educators occurred after completion of the educational component of the intervention and with adolescents and carers after the CHAP.

Discussion

Adolescents with intellectual disability have difficulty obtaining many health services and often find it difficult to become empowered to improve and protect their health. The health intervention package proposed may aid them by augmenting communication, improving documentation of health encounters, and improving access to, and quality of, GP care. Recruitment strategies to consider for future studies in this population include ensuring potential participants can identify themselves with the individuals used in promotional study material, making direct contact with their families at the start of the study, and closely monitoring the implementation of the educational intervention.

Trial Registration Number

ClinicalTrials.gov Identifier: NCT00519311

Keywords:
Intellectual disability; Health advocacy; Adolescent; School-based intervention; Doctor patient relations; Primary health care; General Practitioner; Health diary; Health check