Parent views on enhancing the quality of health care for their children with fragile X syndrome, autism or Down syndrome

Child: Care, Health and Development

Volumn 35, Issue 2, 2009, Pages 250-256

  Minnes, Patricia ^a   Steiner, K ^a  

^a QUEEN S UNIVERSITY   (Canada)

Author keywords

Autism; Children; Down syndrome; Fragile X syndrome; Health care; Parent views

Indexed keywords

ADULT; ARTICLE; AUTISM; CANADA; CAREGIVER BURDEN; CHILD; CHILD HEALTH CARE; CONTINUING EDUCATION; DOWN SYNDROME; FEMALE; FRAGILE X SYNDROME; HEALTH CARE ACCESS; HEALTH CARE AVAILABILITY; HEALTH CARE DELIVERY; HEALTH CARE QUALITY; HEALTH CARE SYSTEM; HEALTH EDUCATION; HEALTH SERVICE; HUMAN; INFORMATION PROCESSING; MALE; PATIENT ADVOCACY; PRIORITY JOURNAL; SELF CONCEPT; SEMI STRUCTURED INTERVIEW; ADOLESCENT; CHILD DEVELOPMENT; MENTAL STRESS; NEEDS ASSESSMENT; ORGANIZATION AND MANAGEMENT; PARENT; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE;

ADOLESCENT; AUTISTIC DISORDER; CHILD; CHILD DEVELOPMENT; CHILD, PRESCHOOL; DOWN SYNDROME; FEMALE; FOCUS GROUPS; FRAGILE X SYNDROME; HEALTH SERVICES ACCESSIBILITY; HUMANS; MALE; NEEDS ASSESSMENT; ONTARIO; PARENTS; QUALITY OF HEALTH CARE; QUESTIONNAIRES; STRESS, PSYCHOLOGICAL; YOUNG ADULT;

EID: 65249125237     PISSN: 03051862     EISSN: 13652214     Source Type: Journal    
DOI: 10.1111/j.1365-2214.2008.00931.x     Document Type: Article

References (28)

1. American Academy of Pediatrics Committee on Children with Disabilities (2001) Role of paediatrician in family centered early intervention services. Pediatrics, 107, 1155-1157.
2. Bailey, D. B., Skinner, D. & Sparkman, K. A. (2003) Discovering fragile X syndrome: Family experiences and perceptions. Pediatrics, 111, 407-416.
3. Barr, O., Gilgunn, J., Kane, T. & Moore, G. (1999) Health screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland. Journal of Advanced Nursing, 29, 1482-91.
4. Beange, H., McElduff, A. & Baker, W. (1995) Medical disorders of adults with mental retardation: A population study. American Journal on Mental Retardation, 99, 595-604.
5. Burge, P., Ouellette-Kuntz, H., McCreary, B., Bradley, E. & Leichner, P. (2002) Senior residents in psychiatry: Views on training in developmental disabilities. Canadian Journal of Psychiatry, 47, 568-571.
6. Greco, C. M., Berman, R., Martin, R. M., Tassone, F., Schwartz, P. H., Chang, A., Trapp, B. D., Iwahashi, C., Brunberg, J., Grigsby, J., Hessl, D., Becker, E. J., Papazian, J., Leehey, M. A., Hagerman, R. J. & Hagerman, P. J. (2006) Neuropathology of fragile X-associated tremor/ ataxia syndrome (FXTAS). Brain, 129, 243-255.
7. Hall, A., Wood, D., Hou, T. & Zhang, J. (2007) Patterns in primary health care utilization among individuals with intellectual and developmental disabilities in Florida. Intellectual and Developmental Disabilities, 45, 310-322.
8. Holland, A. J. & Koot, H. M. (1998) Mental health and intellectual disability: An international perspective. Journal of Intellectual Disability Research, 42, 505-512.
9. Jacobson, J. W. & Mulick, J. A. (2000) System and cost research issues in treatments for people with autistic disorders. Journal of Autism and Developmental Disorders, 30, 585-593.
10. Jansen, D. E. M. C., Krol, B., Groothoff, J. W. & Post, D. (2004) People with intellectual disability and their health problems: A review of comparative studies. Journal of Intellectual Disability Research, 48, 93-102.
11. Kan, C. C., Maaswinkel-Mooij, P. D. & Veenema, H. (1990) Early diagnosis of fragile X mental retardation syndrome [Dutch]. Tijdschrift voor Kindergeneeskunde, 58, 159-164.
12. Kastner, T., Nathanson, R. & Friedman, D. L. (1993) Mortality among individuals with mental retardation living in the community. American Journal on Mental Retardation, 98, 285-292.
13. Kerr, A. M., McCulloch, D., Oliver, K., McLean, B., Coleman, E., Law, T., Beaton, P., Wallace, S., Newell, E., Eccles, T. & Prescott, R. J. (2003) Medical needs of people with intellectual disability require regular reassessment, and the provision of client- and carer-held reports. Journal of Intellectual Disability Research, 47, 134-145.
14. Lauritsen, M. B., Mors, O., Mortensen, P. B. & Ewald, H. (2002) Medical disorders among inpatients with autism in Denmark according to ICD-8: A nationwide register-based study. Journal of Autism and Developmental Disorders, 32, 115-119.
15. Lee, B. A., Mackenzie, J. & Holden, J. J. A. (2003) Fragile X syndrome. In: Developmental Disabilities in Ontario, 2nd edn. (eds I. Brown, M. Percy), pp. 229-244. Ontario Association on Developmental Disabilities, Toronto, ON, Canada.
16. Martin, D. M., Roy, A., Wells, M. B. & Lewis, J. (1997) Health gain through screening- users' and carers' perspectives of health care: developing primary health care services for people with an intellectual disability. Journal of Intellectual and Developmental Disability, 22, 241-249.
17. Mason, J. & Scior, K. (2004) 'Diagnostic overshadowing' amongst clinicians working with people with intellectual disabilities in the UK. Journal of Applied Research in Intellectual Disabilities, 17, 85-90.
18. Mirrett, P. L., Bailey, D. B., Roberts, J. E. & Hatton, D. D. (2004) Developmental screening and detection of developmental delays in infants and toddlers with fragile X Syndrome. Developmental and Behavioral Pediatrics, 25, 21-27.
19. Morgan, D. L. (1998) Focus Groups as Qualitative Research: Qualitative Research Methods Series 16. Sage, Newbury Park, CA, USA.
20. Nachshen, J. S., Woodford, L. & Minnes, P. (2003) The family stress and coping interview for families of individuals with developmental disabilities: A lifespan perspective on family adjustment. Journal of Intellectual Disability Research, 47, 285-290.
21. Ouellette-Kuntz, H., Garcin, N., Lewis, S., Minnes, P., Freeman, C. & Holden, J. J. A. (2005) Addressing health disparities through promoting equity for individuals with intellectual disability. Canadian Journal of Public Health, 96, 8-22.
22. Patton, M. Q. (1990) Qualitative Evaluation and Research Methods, 2nd edn. Sage, Newbury Park, CA, USA.
23. Phillips, A., Morrison, J. & Davis, R. W. (2004) General practitioners' educational needs in intellectual disability health. Journal of Intellectual Disability Research, 48, 142-149.
24. Poehlmann, J., Clements, M., Abbeduto, L. & Farsad, V. (2005) Family experiences associated with a child's diagnosis of fragile X or Down syndrome: Evidence for disruption and resilience. Mental Retardation, 43, 255-267.
25. Roizen, N. J. (2001) Down syndrome: Progress in research. Mental Retardation and Developmental Disabilities Research Reviews, 7, 38-44.
26. van Schrojenstein Lantman-de-Valk, H. M. J., Metsemakers, J. F. M., Haverman, M. J. & Crebolder, H. F. J. M. (2000) Health problems in people with intellectual disability in general practice: A comparative study. Family Practice, 17, 405-407.
27. Strauss, A. & Corbin, J. (1998) Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory, 2nd edn. Sage, Thousand Oaks, CA, USA.
28. Wallace, R. A. (2001) Biopsychosocial profile of adults with intellectual disability. Medical Journal of Australia, 174, 200-201.