Child Indicators Research

, Volume 5, Issue 2, pp 375–391 | Cite as

To Feel Belonged: The Voices of Children and Youth with Disabilities on the Meaning of Wellbeing

  • K.-R. FoleyEmail author
  • A. M. Blackmore
  • S. Girdler
  • M. O’Donnell
  • R. Glauert
  • G. Llewellyn
  • H. Leonard


The aim of this paper was to describe the meaning of wellbeing for children and youth with disabilities from their perspective. Twenty children and young people with a range of disabilities including, cerebral palsy, autism, Aspergers syndrome, Down syndrome, mild to moderate intellectual disability and vision impairment, participated in five focus groups and one interview. Groups were facilitated by at least two experienced professionals, including one scribe who recorded the discussions within the groups and took field notes on contextual information. Open coding was used to initially name and categorise data. Constant comparison methods were then used to compare codes and categories to advance the conceptual understanding. Six themes of the meaning of wellbeing emerged from the data describing participation, the importance of good friends, family factors, anxiety relating to performance at school, coping strategies/resilience, and personal growth and development. The concept of wellbeing from the child’s perspective was described as feeling supported, included and respected, as well as feeling valued and capable. Ideas raised by children and young people have highlighted gaps within current indicator sets of children’s wellbeing. These include reciprocal respect within relationships, coping strategies, feeling valued and having a positive sense of self. Children and young people can provide valuable input into research, regardless of impairment.


Participation Quality of life Disability Focus groups 



We wish to thank Jade Bogdanovs and Louise Ewing for conducting the focus groups and interviews. We gratefully acknowledge the participation of the children in this study, as well as the cooperation and assistance of their parents and the staff at the schools and disability service organizations. We would also like to acknowledge the ARACY Seed-funding Grant for making this project possible.

Declaration of Interests

The authors report no declarations of interest.


  1. Allen, D. (2008). The relationship between challenging behaviour and mental ill-health in people with intellectual disabilities: A review of current theories and evidence. Journal of Intellectual Disabilities, 12(4), 267–294.CrossRefGoogle Scholar
  2. Anderson, D., Dumont, C., Jacobs, P., & Azzaria, L. (2007). The personal costs of caring for a child with a disability: A review of the literature. Public Health Reports, 122(1), 3–16.Google Scholar
  3. Andreou, E. (2000). Bully/victim problems and their association with psychological constructs in 8 to 12 year old Greek school children. Aggressive Behaviour, 26, 49–56.CrossRefGoogle Scholar
  4. Austin, S., & Joseph, S. (1996). Assessment of bully/victim problems in 8 to 11 year olds. British Journal of Educational Psychology, 66, 447–456.CrossRefGoogle Scholar
  5. Australian Institute of Health and Welfare. (2004). Children with disabilities in Australia. Canberra: AIHW.Google Scholar
  6. Australian Institute of Health and Welfare (2008). Disability in Australia: Trends in prevalence, education, employment and community living. Canberra: AIHW. Report no.: 61. Cat. no. AUS 103.Google Scholar
  7. Australian Institute of Health and Welfare (2009a). In: A picture of Australia’s children 2009. Canberra: Australian Institute of Health and Welfare.Google Scholar
  8. Australian Institute of Health and Welfare. (2009b). Disability in australia: Multiple disabilities and need for assistance. Canberra: AIHW. Report No.: DIS 55.Google Scholar
  9. Australian Institute of Health and Welfare (2010). In: Health and wellbeing of young Australians: Indicator framework and key national indicators. Bulletin no 77. Cat. no. AUS123. Canberra: AIHW.Google Scholar
  10. Bennett, N. G., & Lu, H. H. (2007). Methodological issues surrounding the construction of an index of child wellbeing. In Key indicators of child and youth wellbeing: Completing the picture (pp. 445–459). New York: Lawrence Erlbaum Associates.Google Scholar
  11. Beresford, B. (2004). On the road to nowhere? Young disabled people and transition. Child: Care, Health and Development, 30(6), 581–587.CrossRefGoogle Scholar
  12. Booth, T., & Booth, W. (1996). Sounds of silence: Narrative research with inarticulate subjects. Disability & Society, 11(1), 55–69.CrossRefGoogle Scholar
  13. Buckley, S., Bird, G., Sacks, B., & Archer, T. (2006). A comparison of mainstream and special education for teenagers with Down syndrome: Implications for parents and teachers. Down’s syndrome, Research and Practice, 9(3), 54–67.CrossRefGoogle Scholar
  14. Case-Smith, J. (2005). Occupational therapy for children (5th ed.). Philadelphia: Elsevier Mosby.Google Scholar
  15. Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks: Sage Publications.Google Scholar
  16. Colver, A. (2006). Study protocol: SPARCLE—a multi-centre European study of the relationship of environment to participation and quality of life in children with cerebral palsy. Biomed Central Public Health, 6, 105–115.CrossRefGoogle Scholar
  17. Colver, A., Dickinson, H., Parkinson, K. N., Arnaud, C., Beckung, E., Fauconnier, J., et al. (2010). Access of children with cerebral palsy to the physical, social and attitudinal environment they need: A cross sectional European study. Disability and Rehabilitation, 1–8.Google Scholar
  18. Cotty, M. (1996). Phenomenology and nursing research. South Melbourne: Churchill Livingston.Google Scholar
  19. Cuckle, P., & Wilson, J. (2002). Social relationships and friendships among young people with Down’s syndrome in secondary schools. British Journal of Special Education, 29(2), 66–71.CrossRefGoogle Scholar
  20. Cuskelly, M., & Gunn, P. (2003). Sibling relationships of children with Down syndrome: Perspectives of mothers, fathers and siblings. American Journal on Mental Retardation, 108(4), 234–244.CrossRefGoogle Scholar
  21. De, S., Small, J., & Baur, L. (2008). Overweight and obesity among children with developmental disabilities. Journal of Intellectual and Developmental Disability, 33(1), 43–47.CrossRefGoogle Scholar
  22. Decoufle, P., & Autry, A. (2002). Increased mortality in children and adolescents with developmental disabilities. Paediatric and Perinatal Epidemiology, 16(4), 375–382.CrossRefGoogle Scholar
  23. Emerson, E., Honey, A., & Llewellyn, G. (2008). The wellbeing and aspirations of australian adolescents and young adults with a long-term health condition, disability or impairment. Canberra: Australian Research Alliance for Children and Youth.Google Scholar
  24. Fattore, T., Mason, J., & Watson, E. (2009). When children are asked about their wellbeing: Towards a framework for guiding policy. Child Indicators Research, 2, 57–77.CrossRefGoogle Scholar
  25. Flick, U. (1998). An introduction to qualitative research: Theory, method and application. London: Sage Publications.Google Scholar
  26. Flynt, S. W., & Morton, R. C. (2004). Bullying and children with disabilities. Journal of Instructional Psychology, 31(4), 330.Google Scholar
  27. Fougeyrollas, P., Noreau, L., & Boschen, K. A. (2002). Individual characteristics and social participation: Theoretical perspectives and application in persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 7(3), 1–16.CrossRefGoogle Scholar
  28. Frones, I. (2007). Theorizing indicators: On indicators, signs and trends. Social Indicators Research, 83, 5–23.CrossRefGoogle Scholar
  29. Gillot, A., Furniss, F., & Walter, A. (2001). Anxiety in high-functioning children with autism. Autism, 5(3), 277–286.CrossRefGoogle Scholar
  30. Hanafin, S., & Brooks, A. (2009). From rhetoric to reality: Challenges in using data to report on a national set of child wellbeing indicators. Child Indicators Research, 2, 33–55.CrossRefGoogle Scholar
  31. Hannafin, S., & Brooks, A. (2009). From rhetoric to reality: Challenges in using data to report on a national set of child wellbeing indicators. Child Indicators Research, 2, 33–55.CrossRefGoogle Scholar
  32. Hogan, D., Rogers, M. L., & Msall, M. (2000). Functional limitations and key indicators of wellbeing in children with disability. Archives of Pediatric and Adolescent Medicine, 154(10), 1042–1048.Google Scholar
  33. Huebner, E. S., Brantley, A., Nagle, R. J., & Valois, R. F. (2002). Correspondence between parent and adolescent ratings of life satisfaction for adolescents with and without mental disabilities. Journal of Psycho-Educational Assessment, 20, 20–29.CrossRefGoogle Scholar
  34. Krueger, R. A. (1994). Focus groups: A practical guide for applied research. Thousand Oaks: SAGE Publications.Google Scholar
  35. Llewellyn, G., & Leonard, H. (2010). Indicators of health and wellbeing for children and young people with disabilities: Mapping the terrain and proposing a human rights approach. Canberra: Australian Research Alliance for Children and Youth.Google Scholar
  36. Lloyd, V., Gatherer, A., & Kalsy, S. (2006). Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research, 16, 1386–1404.CrossRefGoogle Scholar
  37. Lorig, K. (2001). How do I know what patients want and need? Needs assessment. In Patient education: A practical approach (3rd ed., pp. 1–20). Thousand Oaks: SAGE Publications.Google Scholar
  38. Mason, J., & Hood, S. (2011). Exploring issues of children as actors in social research. Children and Youth Services Review, 33, 490–495.CrossRefGoogle Scholar
  39. Mays, N., & Pope, C. (1995). Rigour and qualitative research. British Medical Journal, 311, 109–112.CrossRefGoogle Scholar
  40. Nielson, M. (2006). Copying actions and copying outcomes: Social learning through the second year. Development and Psychology, 42(3), 555–565.CrossRefGoogle Scholar
  41. Noller, P. (2005). Sibling relationships in adolescence: Learning and growing together. Personal Relationships, 12, 1–22.CrossRefGoogle Scholar
  42. NSW Commission for Children and Young People (2005). In: Participation: Count me in! Involving children and young people in research. Sydney: NSW Commission for Children and Young People.Google Scholar
  43. Oates, A., Bebbington, A., Bourke, J., Girdler, S., & Leonard, H. (2009). Leisure participation for school-aged children with Down syndrome. Disability and Rehabilitation, 1–10.Google Scholar
  44. Patterson, J., & Blum, R. (1996). Risk and resilience among children and youth with disabilities. Archives of Pediatric and Adolescent Medicine, 150(7), 692–698.CrossRefGoogle Scholar
  45. Patton, M. Q. (1990). Qualitative evaluation and research methods. Thousand Oaks: SAGE Publications.Google Scholar
  46. Piek, J. P., Barrett, N. C., Allen, A. J., & Louise, M. (2005). The relationship between bullying and self-worth in children with movement coordination problems. British Journal of Educational Psychology, 75, 453–463.CrossRefGoogle Scholar
  47. Pollard, E. L., & Lee, P. D. (2003). Child wellbeing: A systematic review of the literature. Social Indicators Research, 61, 59–78.CrossRefGoogle Scholar
  48. Rahi, J. S., Tadic, V., Keeley, S., & Lewando-Hundt, G. (2011). Capturing children and young people’s perspective to identify the content for a novel vision-related quality of life instrument. Opthalmology, 118(5), 819–824.CrossRefGoogle Scholar
  49. Richman, D. (2008). Early intervention and prevention of self-injurious behaviour exhibited by young children with developmental disabilities. Journal of Intellectual Disability Research, 52(1), 3.CrossRefGoogle Scholar
  50. Rigby, K., & Slee, P. T. (1992). Dimensions of interpersonal relation among Australian children and implications for psychosocial wellbeing. Journal of Social Psychology, 133, 33–42.CrossRefGoogle Scholar
  51. Roizen, N. J., & Patterson, D. (2003). Down’s syndrome. Lancet, 361(9365), 1281–1289.CrossRefGoogle Scholar
  52. Slee, P. T., & Rigby, K. (1993). The relationship of Eysencks personality factors and self-esteem to bully-victim behaviour in Australian schoolboys. Personality and Individual Differences, 14, 371–373.CrossRefGoogle Scholar
  53. Strauss, A. L., & Corbin, J. M. (1990). Basics of qualitative research. California: Sage Publications.Google Scholar
  54. Sullivan, P., & Knutson, J. (2000). Maltreatment and disabilities: A population-based epidemiological study. Child Abuse & Neglect, 24(10), 1257–1273.CrossRefGoogle Scholar
  55. Swain, J., Heyman, B., & Gillman, M. (1998). Public research, private concerns: Ethical issues in the use of open-ended interviews with people who have learning disabilities. Disability and Society, 13, 21–36.CrossRefGoogle Scholar
  56. Tietelman, J., & Copolillo, A. (2005). Psychosocial issues in older adults adjustment to vision loss: Findings from qualitative interviews and focus groups. The American Journal of Occupational Therapy, 59, 409–417.CrossRefGoogle Scholar
  57. Turner, S., & Alborz, A. (2003). Academic attainments of children with Down’s syndrome: a longitudinal study. British Journal of Educational Psychology, 73, 563–583.CrossRefGoogle Scholar
  58. United Nations (1994). In: Standard rules on the equalisation of opportunities for persons with disabilities. New York: United Nations.Google Scholar
  59. United Nations (2006a). In: Convention on the rights of persons with disabilities. Geneva: United Nations.Google Scholar
  60. United Nations (2006b). In: Convention on the rights of persons with disabilities. Resolution 60/232. New York.Google Scholar
  61. United Nations Children’s Fund (UNICEF) (2007). In: Child poverty in perspective: An overview of child wellbeing in rich countries. Florence: UNICEF.Google Scholar
  62. United Nations Children’s Fund (UNICEF) (2011). In: The state of the world’s children: Adolescence an age of opportunity. New York: UNICEF.Google Scholar
  63. United Nations High Commissioner for Refugees (1989). In: Convention on the rights of the child. Geneva: UNHCR.Google Scholar
  64. United Nations High Commissioner for Refugees (2006). In: Convention on the rights of persons with disabilities. Geneva: UNHCR.Google Scholar
  65. Uprichard, E. (2008). Children as ’being and becomings’: Children, childhood and temporality. Children and Society, 22, 303–313.CrossRefGoogle Scholar
  66. Ventegodt, S., Merrick, J., & Andersen, N. J. (2003). Quality of life theory I. The IQOL theory: An integrative theory of the global quality of life concept. The Scientific World Journal, 3, 1030–1040.CrossRefGoogle Scholar
  67. Verdonschot, M. M. L., de Witte, L. P., Reichrath, E., Buntinx, W. H. E., & Curfs, L. M. G. (2009). Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research, 53(4), 303–318.CrossRefGoogle Scholar
  68. Vik, K., Nygard, L., & Lilja, M. (2007). Perceived environmental influence on participation among older adults after home-based rehabilitation. Physical and Occupational Therapy in Geriatrics, 25(4), 1–20.CrossRefGoogle Scholar
  69. Williams, K., Leonard, H., Tursan d’Espaignet, E., Colvin, L., Slack-smith, L., & Stanley, F. (2005). Hospitalisations from birth to five years in a population cohort of western australian children with intellectual disability. Archives of Disease in Childhood, 90, 1243–1258.CrossRefGoogle Scholar
  70. World Health Organisation. (2001). ICF: International classification of functioning, disability and health (1st ed.). Geneva: World Health Organisation.Google Scholar
  71. World Health Organisation. (2007). ICF-CY: International classification of functioning, disability and health children and youth version. Geneva: World Health Organisation.Google Scholar

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • K.-R. Foley
    • 1
    • 5
    Email author
  • A. M. Blackmore
    • 2
  • S. Girdler
    • 1
    • 5
  • M. O’Donnell
    • 3
  • R. Glauert
    • 3
  • G. Llewellyn
    • 4
  • H. Leonard
    • 3
  1. 1.School of Exercise, Biomedical and Health SciencesEdith Cowan UniversityPerthAustralia
  2. 2.The Centre for Cerebral PalsyPerthAustralia
  3. 3.Telethon Institute for Child Health Research, Centre for Child Health ResearchUniversity of Western AustraliaPerthAustralia
  4. 4.University of SydneySydneyAustralia
  5. 5.Telethon Institute for Child Health Research, Centre for Child Health ResearchUniversity of Western AustraliaPerthAustralia

Personalised recommendations