期刊论文详细信息
BMC Public Health
Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial
Chris Bain3  Lyn McPherson1  Gail Williams2  Michael O’Callaghan1  Suzanne Carrington4  Robert Ware2  Nicholas Lennox1 
[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]Genetics and Population Health Division, Queensland Institute of Medical Research, Brisbane, Queensland, Australia
[4]School of Learning & Professional Studies, Queensland University of Technology, Victoria Park Road, Kelvin Grove Qld 4059, Australia
关键词: Health check;    Health diary;    General Practitioner;    Primary health care;    Doctor patient relations;    School-based intervention;    Adolescent;    Health advocacy;    Intellectual disability;   
Others  :  1163141
DOI  :  10.1186/1471-2458-12-750
 received in 2012-08-06, accepted in 2012-09-04,  发布年份 2012
PDF
【 摘 要 】

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

【 授权许可】

   
2012 Lennox et al.; licensee BioMed Central Ltd.

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【 参考文献 】
  • [1]Australian Institute of Health and Welfare: Disability in Australia: Intellectual disability. Canberra: AIHW; 2008. Bulletin no. 67. Cat no. AUS 110
  • [2]Beange H, McElduff A, Baker W: Medical disorders of adults with mental retardation: a population study. Am J Ment Retard 1995, 99(6):595-604.
  • [3]Baxter H, Lowe K, Houston H, Jones G, Felce D, Kerr M: Previously unidentified morbidity in patients with intellectual disability. Br J Gen Pract 2006, 56(523):93-98.
  • [4]Cooper SA, Morrison J, Melville C, Finlayson J, Allan L, Martin G, Robinson N: Improving the health of people with intellectual disabilities: outcomes of a health screening programme after 1 year. J Intellect Disabil Res 2006, 50:667-677.
  • [5]Felce D, Baxter H, Lowe K, Dunstan F, Houston H, Jones G, Felce J, Kerr M: The Impact of Repeated Health Checks for Adults with Intellectual Disabilities. J Appl Res Intellect Disabil 2008, 21(6):585-596.
  • [6]Lennox N, Bain C, Rey-Conde T, Purdie D, Bush R, Pandeya N: Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial. Int J Epidemiol 2007, 36(1):139-146.
  • [7]Lennox N, Bain C, Rey-Conde T, Taylor M, Boyle FM, Purdie DM, Ware RS: Cluster randomized-controlled trial of interventions to improve health for adults with intellectual disability who live in private dwellings. J Appl Res Intellect Disabil 2010, 23(4):303-311.
  • [8]Lennox N, Taylor M, Rey-Conde T, Bain C, Boyle FM, Purdie DM: Ask for it: development of a health advocacy intervention for adults with intellectual disability and their general practitioners. Health Promot Int 2004, 19(2):167-175.
  • [9]Lennox N, Ware R, Bain C, Taylor GM, Cooper SA: Effects of health screening for adults with intellectual disability: a pooled analysis. Br J Gen Pract 2011, 61(584):193-196.
  • [10]Robertson J, Roberts H, Emerson E, Turner S, Greig R: The impact of health checks for people with intellectual disabilities: a systematic review of evidence. J Intellect Disabil Res 2011, 55(11):1009-1019.
  • [11]Webb OJ, Rogers L: Health screening for people with intellectual disability: the New Zealand experience. J Intellect Disabil Res 1999, 43:497-503.
  • [12]Ackland MJ, Wade RW: Health status of Victorian special school children. J Paediatr Child Health 1995, 31(5):571-575.
  • [13]Cathels BA, Reddihough DS: The health care of young adults with cerebral palsy. Med J Aust 1993, 159(7):444-446.
  • [14]Bowley C, Kerr M: Epilepsy and intellectual disability. J Intellect Disabil Res 2000, 44(Pt 5):529-543.
  • [15]Einfeld SL, Ellis LA, Emerson E: Comorbidity of intellectual disability and mental disorder in children and adolescents: a systematic review. J Intellect Dev Disabil 2011, 36(2):137-143.
  • [16]Oeseburg B, Jansen DE, Groothoff JW, Dijkstra GJ, Reijneveld SA: Emotional and behavioural problems in adolescents with intellectual disability with and without chronic diseases. J Intellect Disabil Res 2010, 54(1):81-89.
  • [17]Tonge B, Einfeld S: The trajectory of psychiatric disorders in young people with intellectual disabilities. Aust N Z J Psychiatry 2000, 34(1):80-84.
  • [18]Lennox NG, Diggens JN, Ugoni AM: The general practice care of people with intellectual disability: barriers and solutions. J Intellect Disabil Res 1997, 41(5):380-390.
  • [19]Wullink M, Veldhuijzen W, van Schrojenstein Lantman-de Valk HM, Metsemakers JF, Dinant GJ: Doctor-patient communication with people with intellectual disability–a qualitative study. BMC Fam Pract 2009, 10:82. BioMed Central Full Text
  • [20]Ziviani J, Lennox N, Allison H, Lyons M, Del Mar C: Meeting in the middle: improving communication in primary health care consultations with people with an intellectual disability. J Intellect Dev Disabil 2004, 29(3):211-225.
  • [21]Lennox NG, Brolan CE, Dean J, Ware RS, Boyle FM, Taylor Gomez M, van Dooren K, Bain C: General practitioners’ views on perceived and actual gains, benefits, and barriers associated with the implementation of an Australian health assessment for people with intellectual disability. J Intellect Disabil ResAdvance on-line publication, 10 July, 2012
  • [22]Lennox NG, Rey-Conde TF, Faint SL: A pilot of interventions to improve health care in adolescents with intellectual disability. J Appl Res Intellect Disabil 2008, 21(5):484-489.
  • [23]Australian Bureau of Statistics: ASGC Remoteness and Classification: Purpose and Use. ABS, Canberra; 2003. Census Paper No. 03/01
  • [24]Taffe JR, Gray KM, Einfeld SL, Dekker MC, Koot HM, Emerson E, Koskentausta T, Tonge BJ: Short form of the developmental behaviour checklist. Am J Ment Retard 2007, 112(1):31-39.
  • [25]Carrington S, Lennox N: Advancing the curriculum for young people who have an intellectual disability. Advocacy in Health: a pilot study. Australas J Spec Educ 2008, 32(2):177-186.
  • [26]Emerson E: Challenging behaviour: analysis and intervention in people with severe intellectual disabilities. 2nd edition. Cambridge: CUP; 2001.
  • [27]Bazeley P: The Bricoleur with a computer: Piecing together qualitative and quantitative data. Qual Health Res 1999, 9(2):279-287.
  • [28]Marshall C, Rossman GB: Designing qualitative research. 3rd edition. Thousand Oaks, Calif: Sage; 1999.
  • [29]Piper DL, King MJ, Moberg DP: Implementing a middle school health promotion research project: Lessons our textbook didn't teach us. Eval Program Plann 1993, 16(3):171-180.
  • [30]Ellickson PL: Getting and keeping schools and kids for evaluation studies. J Community Psychol 1994, 102:102-116.
  • [31]Payne AA, Gottfredson DC, Gottfredson GD: School predictors of the intensity of implementation of school-based prevention programs: Results from a national study. Prev Sci 2006, 7(2):225-237.
  • [32]Fagan AA, Brooke-Weiss B, Cady R, Hawkins JD: If at First You Don't Succeed … Keep Trying: Strategies to Enhance Coalition/School Partnerships to Implement School-Based Prevention Programming. Aust NZ J Criminol 2009, 42(3):387-405.
  • [33]Fletcher AC, Hunter AG: Strategies for obtaining parental consent to participate in research. Family Relations 2003, 52(3):216-221.
  • [34]World Health Organization: The World Bank: World report on disability. Geneva: WHO; 2011.
  • [35]Emerson E: Poverty and people with intellectual disabilities. MRDD Res Rev 2007, 13:107-113.
  • [36]Lennox N, Taylor M, Rey-Conde T, Bain C, Purdie DM, Boyle F: Beating the barriers: recruitment of people with intellectual disability to participate in research. J Intellect Disabil Res 2005, 49:296-305.
  • [37]Ouellette-Kuntz H: Understanding health disparities and inequities faced by individuals with intellectual disabilities. J Appl Res Intellect Disabil 2005, 18:113-121.
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