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Parents’ perception of the quality of life of preschool children at risk or having developmental disabilities

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Abstract

Despite increased concern for the health related quality of life (HRQOL) of people with disabilities, little is known about the HRQOL of children with developmental disabilities. The present study aimed to explore the HRQOL of children who were at risk or having developmental disabilities in Hong Kong. Using the parent-reported Chinese Pediatric Quality of Life Inventory (PedsQL), the HRQOL of 173 children (2–4 years) with signs of delays in development was contrasted with that of 132 children with typical development. We found that those who exhibited high risk of developing a developmental disability had significantly lower overall well-being (76.3 ± 13.7 vs. 84.2 ± 11.3; p<0.001) and psychosocial health (71.3 ± 15.6 vs. 82.5 ± 12.9; p<0.001) but not necessarily physical health. The findings are consistent with previous findings in children with different disabilities and chronic illnesses. They suggest children at risk or having DDs need help in restoring their quality of life up to the standard experienced by their healthy peers, particular in psychosocial aspects such as social functioning, emotion functioning, and school functioning.

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References

  1. American Academy of Pediatrics. Developmental Disabilities – An Overview, San Francisco, CA: The Medem Network 2005. http://www.medem.com/MedLB/article_detaillb.cfm? article_ID=ZZZPUU2KGDC&sub_cat=105

  2. Centers for Disease Control and Prevention. Metropolitan Atlanta Developmental Disabilities Surveillance Program, Atlanta, GA: Centers for Disease Control and Prevention 2004. http://www.cdc.gov/ncbddd/dd/ddsurv.htm

  3. Census and Statistics Department. Social Data Collected via the General Household Survey, Special Topics Report no. 28, Persons with Disabilities and Chronic Illness, Hong Kong: Printing Department, HKSAR, 2001.

  4. (2004). Social Welfare Services Figures, 2004 Edition. The Government of HKSAR, Hong Kong

    Google Scholar 

  5. Renwick R, Furge Schormans A and Zekvoic B (2003). Quality of life for children with developmental disabilities: A new conceptual framework. J Dev Disabil 10(1): 107–114

    Google Scholar 

  6. Baker BL and Feinfield KA (2003). Early intervention. Curr Opin Psychiatr 16(5): 503–509

    Article  Google Scholar 

  7. Feekes M, Theunissen NCM, Brugman E, Veen S, Verrips EGH and Koopmanm HM (2000). Development and psychometric evaluation of the TAPQOL: A health-related quality of life instrument for 1–5-year-old children. Qual Life Res 9(8): 961–972

    Article  Google Scholar 

  8. Sabaz M, Cairn DR, Lawson JA, Bleasel AF and Bye AME (2001). The health related quality of life of children with refractory epilepsy: A comparison of those with and without intellectual disability. Eplepsia 42(5): 621–628

    Article  CAS  Google Scholar 

  9. Palermo TM, Schwartz L, Drotar D and McGowan K (2002). Parental report of health-related quality of life in children with sickle cell disease. J Behav Med 25(3): 269–283

    Article  PubMed  Google Scholar 

  10. Sawyer MG, Whaites L, Rey JM, Hwzell PL, Graetz BW and Baghurst P (2002). Health-related quality of life of children and adolescents with mental disorders. J Am Acad Child Adolesc Psychiatry 41(5): 530–537

    Article  PubMed  Google Scholar 

  11. Watson SMR and Keith KP (2002). Comparing quality of life of school-age children with and without disability. Ment Retard 40(4): 304–312

    Article  PubMed  Google Scholar 

  12. Schwimmer JB, Burnwickle TM and Varni JW (2003). Health-related quality of life of severely obese children and adolescents. J Am Med Assoc 289(14): 1813–1819

    Article  Google Scholar 

  13. Saigal S, Rosenbaum P, Stoskopf B, Hoult L, Furlong W and Fenny D (2005). Development, reliability and validity of a new measure of overall health for pre-school children. Qual Life Res 14: 243–357

    Article  PubMed  CAS  Google Scholar 

  14. Nathan PC, Furlong W, Horsman J, Rolland M, Pauw S and Schaik C (2004). Health status of young children during therapy for advanced neuroblastoma. Pediatr Blood Cancer 43: 659–667

    Article  PubMed  CAS  Google Scholar 

  15. Nathan PC, Furlong W, Horsman J, Rolland M, Weitzman S and Schaik C (2004). Inter-observer agreement of a comprehensive health status classification system for pre-school children among patients with Wilms’ tumor or advanced neuroblastoma. Qual Life Res 13: 1707–1714

    Article  PubMed  CAS  Google Scholar 

  16. Center for Disease Control and Prevention. Developmental Disabilities, Atlanta, GA: Center for Disease Control and Prevention 2004 http://www.cdc.gov/ncbddd/dd/default.htm

  17. (2004). Handbook on Rehabilitation Services. Rehabilitation and Medical Social Service Brunch, Social Welfare Department, Hong Kong

    Google Scholar 

  18. Varni JW, Seid M and Kurtin PS (2001). The Peds QLTM: Reliability and validity of the Pediatric Quality of Life Inventory TM Version 4.0 Generic Core Scales in healthy and patient populations. Med Care 39: 800–812

    Article  PubMed  CAS  Google Scholar 

  19. Varni JW, Seid M and Kurtin PS (1999). Pediatric health related quality of life measurement technology: A guide for health care decision maker. J Clin Outcome Manage 6: 33–40

    Google Scholar 

  20. Varni JW, Seid M and Rode CA (1999). The PedsQLTM measurement model for the pediatric quality of life inventory. Med Care 37(2): 126–139

    Article  PubMed  CAS  Google Scholar 

  21. Varni JW, Seid M, Knight TS, Uzark K and Szer IS (2002). The PedsQL TM 4.0 Generic Core Scales: Sensitivity, responsiveness and impact on clinical decision making. J Behav Med 25(2): 175–193

    Article  PubMed  Google Scholar 

  22. Seid M, Varni JW and Jacobs JR (2000). Pediatric health related quality of life measurement technology: Intersection between science, managed care and clinical care. J Clin Psy Med S 7(1): 17–27

    Article  Google Scholar 

  23. Chan FL, Chow SM and Lo SK (2005). Preliminary validation of the Chinese version of the Pediatric Quality of Life Inventory. Int J Rehabil Res 28(3): 219–227

    Article  PubMed  Google Scholar 

  24. Thompson T, Caruoo M and Ellerbeck K (2003). Sex matters in autism and other developmental disabilities. J Learning Disabil 7(4): 345–362

    Article  Google Scholar 

  25. Eiser C and Morse R (2001). The measurement of quality of life in children: Past and future perspectives. J Dev Behav Pediatr 22(4): 248–256

    PubMed  CAS  Google Scholar 

  26. Eiser C and Morse R (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Qual Life Res 10: 347–357

    Article  PubMed  CAS  Google Scholar 

  27. Schmidt LJ, Garratt AM and Fitzpatrick R (2002). Child/ parent-assessed population health outcome measures: a structured review. Child Care Health Dev 28(3): 227–237

    Article  PubMed  CAS  Google Scholar 

  28. Harding L (2001). Children’s quality of life assessments: A review of generic and health related quality of life measures completed by children and adolescents. Clin Psychol Psychot 8: 79–86

    Article  Google Scholar 

  29. Vogel T, Verrips GH and Verloove Vanhorick SP (1998). Measuring health related quality of life in children: the development of the TACQOL, parent form. Qual Life Res 7: 457–465

    Article  Google Scholar 

  30. Varni JW and Bruwinkle TM (2005). The PedsQLTM 4.0 generic core scale as a pediatric PRO instrument: Experience with over 18,000 children and parents. Patient Report Outcome Newsletter 35(4): 1–4

    Google Scholar 

  31. Varni JW. PedsQLTM Existing Translations. Lyon: Mapi Research Institute 2006 http://www.pedsql.org/PedsQL-Translation-Tables.doc#_Toc116118399

  32. Craig J (1997). Human Development. Prentice Hall, New Jersey, 295–325

    Google Scholar 

  33. Holroyd EE (2003). Chinese cultural influences on parental caregiving obligations toward children with disabilities. Qual Health Res 13(1): 4–19

    Article  PubMed  Google Scholar 

  34. Opper S. Hong Kong’s Young Children: Their Early Development and Learning. Hong Kong: The University of Hong Kong Press, 1996: 19–50; 69–79.

  35. Solish A, Minnes P and Kupferschmidt A (2003). Integration of children with developmental disabilities in social activities. J Dev Disabil 10(1): 115–122

    Google Scholar 

  36. Elliott SN, Malecki CK and Demaray MK (2001). New directions in social skills assessment and intervention for elementary and middle school students. Exceptionality 9(1&2): 19–32

    Article  Google Scholar 

  37. Chao R (1995). Chinese and European American cultural models of the self-reflected in mothers’ childrearing briefs. Ethos 23: 328–354

    Article  Google Scholar 

  38. Spence SH (2003). Social skills training with children and young people: Theory, evidence and practice. Child Adolesc Ment Health 8(2): 84–96

    Article  Google Scholar 

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Authors and Affiliations

  1. Hong Chi Pinehill Preschool Center, Hong Kong SAR, China

    Ka-Ming Lau

  2. Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong SAR, China

    Susanna M. K. Chow

  3. Faculty of Health and Behavioural Sciences, Deakin University, 221 Burwood Highway, Melbourne, Burwood, VIC, 3125, Australia

    Sing Kai Lo

Authors
  1. Ka-Ming Lau
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  2. Susanna M. K. Chow
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  3. Sing Kai Lo
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Correspondence to Sing Kai Lo.

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Lau, KM., Chow, S.M.K. & Lo, S.K. Parents’ perception of the quality of life of preschool children at risk or having developmental disabilities. Qual Life Res 15, 1133–1141 (2006). https://doi.org/10.1007/s11136-006-0067-z

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  • DOI: https://doi.org/10.1007/s11136-006-0067-z

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