Quality of Life in Adolescents with a Disability and Their Parents: The Mediating Role of Social Support and Resilience

Journal of Developmental and Physical Disabilities

Volumn 24, Issue 5, 2012, Pages 487-503

  Migerode, Femke ^a   Maes, Bea ^b   Buysse, Ann ^a   Brondeel, Ruben ^a  

^a GHENT UNIVERSITY   (Belgium)

^b UNIVERSITY OF LEUVEN   (Belgium)

Author keywords

Adolescents; Disability; Mediators; Parents; Quality of Life; Resilience; Social support

Indexed keywords

EID: 84865967123     PISSN: 1056263X     EISSN: None     Source Type: Journal    
DOI: 10.1007/s10882-012-9285-1     Document Type: Article

References (66)

1. Alriksson-Schmidt, A. I., Wallander, J., & Biasini, F. (2007). Quality of life and resilience in adolescents with a mobility disability. Journal of Pediatric Psychology, 32(3), 370-379. doi: 10. 1093/jpepsy/jsl002.
2. Baker, B. L., Blacher, J., & Olsson, M. B. (2005). Preschool children with and without developmental delay: behaviour problems, parents' optimism and well-being. Journal of Intellectual Disability Research, 49(8), 575-590. doi: 10. 1111/j. 1365-2788. 2005. 00691. x.
3. Blacher, J., & McIntyre, L. L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184-198. doi: 10. 1111/j. 1365-2788. 2005. 00768. x.
4. Bollen, K. A. (1989). Structural equations with latent variables. New York: Wiley.
5. Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders. Autism, 8(4), 409-423. doi: 10. 1177/1362361304047224.
6. Cummins, R. A. (1997). Comprehensive quality of life scale-intellectual/cognitive disability. Manual, 5th edition. Melbourne: School of Psychology, Deakin University.
7. Cummins, R. A. (1998). The second approximation to an international standard for life satisfaction. Social Indicators Research, 43(3), 307-334. doi: 10. 1023/A: 1006831107052.
8. Cummins, R. A. (2001). Living with support in the community: predictors of satisfaction with life. Mental Retardation & Developmental Disabilities Research Reviews, 7(2), 99-104. doi: 10. 1002/mrdd. 1014.
9. Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49, 699-706. doi: 10. 1111/j. 1365-2788. 2005. 00738. x.
10. Daniel, B., & Wassell, S. (2002). Adolescence: Assessing and promoting resilience in vulnerable children. Londen: Jessica Kingsley.
11. Demarest, S., van der Heyden, J., Gisle, L., Buziarsist, J., Miermans, P., & Sartor, F. (2001). Gezondheidsenquête door middel van Interview, België. Retrieved May, 2011, from Wetenschappelijk Instituut Volksgezondheid http://www. iph. fgov. be/epidemio/epinl/crospnl/hisnl/table01. htm.
12. Flaherty, E. M., & Glidden, L. M. (2000). Positive adjustment in parents rearing children with Down Syndrome. Early Education and Development, 11, 407-422. doi: 10. 1207/s15566935eed1104_3.
13. Forrester-Jones, R., Carpenter, J., Coolen-Schrijner, P., Cambridge, P., Tate, A., & Beecham, J. (2006). The social networks of people with intellectual disability living in the Community 12 Years after resettlement from long-stay hospitals. Journal of Applied Research in Intellectual Disabilities, 19(4), 285-295. doi: 10. 1111/j. 1468-3148. 2006. 00263. x.
14. Gelman, A., Hill, J., Su, Y.-S., Masanao, Y., & Pittau, M. G. (2011). mi: Missing Data Imputation and Model Checking. R package version 0. 09-14., from http://CRAN. R-project. org/package=mi.
15. Given, C. W., Given, B., Stommel, M., Collins, C., King, S., & Franklin, S. (1992). The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Research in Nursing & Health, 15(4), 271-283. doi: 10. 1002/nur. 4770150406.
16. Glidden, L. M., Bamberger, K. T., Turek, K. C., & Hill, K. L. (2010). Predicting mother/father-child interactions: parental personality and well-being, socioeconomic variables and child disability status. Journal of Applied Research in Intellectual Disabilities, 23(1), 3-13. doi: 10. 1111/j. 1468-3148. 2009. 00549. x.
17. Goldenberg, I., & Goldenberg, H. (2003). Family therapy: An overview (6th ed.). Pacific Grove: Brooks/Cole.
18. Green, S. E. (2007). "We're tired, not sad": benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64(1), 150-163. doi: 10. 1016/j. socscimed. 2006. 08. 025.
19. Grov, E. K., Fosså, S. D., Tønnessen, A., & Dahl, A. A. (2006). The Caregiver Reaction Assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psycho-Oncology, 15(6), 517-527. doi: 10. 1002/pon. 987.
20. Haber, M., Cohen, J., Lucas, T., & Baltes, B. (2007). The relationship between self-reported received and perceived social support: a meta-analytic review. American Journal of Community Psychology, 39(1), 133-144. doi: 10. 1007/s10464-007-9100-9.
21. Han, H.-R. (2003). Korean mothers' psychosocial adjustment to their children's cancer. Journal of Advanced Nursing, 44(5), 499-506. doi: 10. 1046/j. 0309-2402. 2003. 02833. x.
22. Hastings, R. P., & Taunt, H. M. (2002). Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation, 107(2), 116-127. doi: 10. 1352/0895-8017(2002)107<0116: PPIFOC> 2. 0. CO; 2.
23. Hatton, C., & Ager, A. (2002). Quality of life measurement and people with intellectual disabilities: a reply to Cummins. Journal of Applied Research in Intellectual Disabilities, 15(3), 254-260. doi: 10. 1046/j. 1468-3148. 2002. 00124. x.
24. Hatton, C., & Emerson, E. (2003). Families with a person with intellectual disabilities: stress and impact. Current Opinion in Psychiatry, 16, 497-501. doi: 10. 1097/00001504-200309000-00002.
25. Heiman, T. (2002). Parents of children with disabilities: resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14(2), 159-171. doi: 10. 1023/A: 1015219514621.
26. Hodapp, R. M. (2002). Parenting children with mental retardation. In M. H. Bornstein (Ed.), Handbook for parenting Vol. 1. Children and parenting (pp. 355-381). London: Lawrence Erlbaum.
27. Holland, K. D., & Holahan, C. K. (2003). The relation of social support and coping to positive adaptation to breast cancer. Psychology & Health, 18(1), 15-29. doi: 10. 1080/0887044031000080656.
28. Hunfeld, J. A. M., Perquin, C. W., Duivenvoorden, H. J., Hazebroek-Kampschreur, A. A. J. M., Passchier, J., & van Suijlekom-Smit, L. W. A. (2001). Chronic pain and its impact on quality of life in adolescents and their families. Journal of Pediatric Psychology, 26(3), 145-153. doi: 10. 1093/jpepsy/26. 3. 145.
29. Jacques, R. (2006). Family issues. Psychiatry, 5(10), 337-340. doi: 10. 1053/j. mppsy. 2006. 08. 011.
30. Jozefiak, T., Larsson, B., Wichstrøm, L., & Mattejat, F. (2010). Quality of Life as reported by children and parents: a comparison between students and child psychiatric outpatients. Health and Quality of Life Outcomes, 8, 136. doi: 10. 1186/1477-7525-8-136.
31. Kearney, P. M., & Griffin, T. (2001). Between joy and sorrow: being a parent of a child with developmental disability. Journal of Advanced Nursing, 34, 582-592. doi: 10. 1046/j. 1365-2648. 2001. 01787. x.
32. Kessler, R., & McLeod, J. (1985). Social support and psychological distress in community surveys. In S. Cohen & S. Syme (Eds.), Social support and health (pp. 19-40). New York: Academic.
33. Lavee, Y., Hamilton, I. M., & Patterson, J. M. (1985). The double ABCX model of family stress and adaptation: an empirical test by analysis of structural equations with latent variables. Journal of Marriage and the Family, 47(4), 811-825. doi: 10. 2307/352326.
34. Maes, B., Broekman, T. G., Dosen, A., & Nauts, J. (2003). Caregiving burden of families looking after persons with intellectual disability and behavioural or psychiatric problems. Journal of Intellectual Disability Research, 47(6), 447-455. doi: 10. 1046/j. 1365-2788. 2003. 00513. x.
35. McCubbin, H. I., & Patterson, J. M. (1983). The family stress process: The Double ABCX Model of adjustment and adaptation. In H. I. McCubbin, M. B. Sussman, & J. M. Patterson (Eds.), Social stress and the family: Advances and developments in family stress theory and research (pp. 7-37). New York: Haworth.
36. McIntyre, L. L., Blacher, J., & Baker, B. L. (2002). Behaviour/mental health problems in young adults with intellectual disability: the impact on families. Journal of Intellectual Disability Research, 46(3), 239-249. doi: 10. 1046/j. 1365-2788. 2002. 00371. x.
37. Muthén, L. K., & Muthén, B. O. (1998-2010). Mplus User's Guide. Sixth Edition. Los Angeles: Muthén & Muthén.
38. Norizan, A., & Shamsuddin, K. (2010). Predictors of parenting stress among Malaysian mothers of children with Down syndrome. Journal of Intellectual Disability Research, 54, 992-1003. doi: 10. 1111/j. 1365-2788. 2010. 01324. x.
39. Olsson, M. B., & Hwang, C. P. (2008). Socioeconomic and psychological variables as risk and protective factors for parental well-being in families of children with intellectual disabilities. Journal of Intellectual Disability Research, 52(12), 1102-1113. doi: 10. 1111/j. 1365-2788. 2008. 01081. x.
40. Pakenham, K. I., Samios, C., & Sofronoff, K. (2005). Adjustment in mothers of children with Asperger syndrome. Autism, 9(2), 191-212. doi: 10. 1177/1362361305049033.
41. Patrick, D. L., Kinne, S., Engelberg, R. A., & Pearlman, R. A. (2000). Functional status and perceived quality of life in adults with and without chronic conditions. Journal of Clinical Epidemiology, 53(8), 779-785. doi: 10. 1016/S0895-4356(00)00205-5.
42. Portzky, M., Wagnild, G., De Bacquer, D., & Audenaert, K. (2010). Psychometric evaluation of the Dutch Resilience Scale RS-nl on 3265 healthy participants: a confirmation of the association between age and resilience found with the Swedish version. Scandinavian Journal of Caring Sciences, 24, 86-92. doi: 10. 1111/j. 1471-6712. 2010. 00841. x.
43. Preacher, K. J., & Hayes, A. F. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behaviour research methods, 40(3), 879-891. doi: 10. 3758/BRM. 40. 3. 879.
44. Renty, J., & Roeyers, H. (2007). Individual and marital adaptation in men with autism spectrum disorder and their spouses: the role of social support and coping strategies. Journal of Autism and Developmental Disorders, 37(7), 1247-1255. doi: 10. 1007/s10803-006-0268-x.
45. Robertson, J., Emerson, E., Gregory, N., Hatton, C., Kessissoglou, S., & Hallam, A. (2001). Social networks of people with mental retardation in residential settings. Mental Retardation, 39(3), 201-214. doi: 10. 1352/0047-6765(2001)039<0201: SNOPWM>2. 0. CO; 2.
46. Rolland, J. S., & Walsh, F. (2006). Facilitating family resilience with childhood illness and disability. Current Opinion in Pediatrics, 18(5), 527-538. doi: 10. 1097/01. mop. 0000245354. 83454. 68.
47. Rutter, M. (1987). Psychosocial resilience and protective mechanisms. American Journal of Orthopsychiatry, 57(3), 316-331. doi: 10. 1111/j. 1939-0025. 1987. tb03541. x.
48. Saloviita, T., Itälinna, M., & Leinonen, E. (2003). Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: a Double ABCX Model. Journal of Intellectual Disability Research, 47(4-5), 300-312. doi: 10. 1046/j. 1365-2788. 2003. 00492. x.
49. Sands, D. G., & Kozleski, E. B. (1994). Quality of life differences between adults with and without disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 29, 30-101.
50. Schalock, R. L., & Felce, D. (2004). Quality of life and subjective well-being: conceptual and measurement issues. In E. Emerson, C. Hatton, T. Thompson, & T. Parmenter (Eds.), The international handbook of applied research in intellectual disabilities (pp. 261-279). Chichester: Wiley.
51. Schalock, R. L., Brown, I., Brown, R., Cummins, R. A., Felce, D., & Matikka, L. (2002). Conceptualization, measurement, and application of Quality of Life for persons with intellectual disabilities: report of an international panel of experts. Mental Retardation, 40(6), 457-470. doi: 10. 1352/0047-6765(2002)040<0457: CMAAOQ> 2. 0. CO; 2.
52. Seligman, M., & Darling, R. (2007). Ordinary families, special children: A systems approach to childhood disability. New York: The Guilford.
53. Sherbourne, C. D., & Stewart, A. L. (1991). The MOS social support survey. Social Science & Medicine. doi: 10. 1016/0277-9536(91)90150-B.
54. Shrout, P. E., & Bolger, N. (2002). Mediation in experimental and nonexperimental studies: new procedures and recommendations. Psychological methods, 7(4), 422-445. doi: 10. 1037//1082-989X. 7. 4. 422.
55. Taanila, A., Jarvelin, M. R., & Kokkonen, J. (1999). Cohesion and parents' social relations in families with a child with disability or chronic illness. International Journal of Rehabilitation Research, 22(2), 101-110. doi: 10. 1097/00004356-199906000-00004.
56. Tak, Y. R., & McCubbin, M. (2002). Family stress, perceived social support and coping following the diagnosis of a child's congenital heart disease. Journal of Advanced Nursing, 39(2), 190-198. doi: 10. 1046/j. 1365-2648. 2002. 02259. x.
57. Thompson, J. R., Bryant, B., Campbell, E. M., Craig, E. M., Hughes, C., & Rotholz, D. (2004). Supports intensity scale. Washington, DC: American Association on Mental Retardation.
58. Turnbull, A. P., & Turnbull, H. R. (2001). Families, professionals, and exceptionality (4th ed.). Upper Saddle River: Merrill/Prentice Hall.
59. Turnbull, A. P., Poston, D. J., Minnes, O., & Summers, J. A. (2007). Providing supports and services that enhance a family's quality of life. In I. Brown & M. Percy (Eds.), A comprehensive guide to intellectual and developmental disabilities (pp. 561-571). Baltimore: P. H. Brookes.
60. van Exel, N. J. A., Brouwer, W. B. F., van den Berg, B., Koopmanschap, M. A., & van den Bos, G. A. M. (2004). What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden. Clinical Rehabilitation, 18(6), 683-693. doi: 10. 1191/0269215504cr743oa.
61. Wagnild, G. M., & Young, H. M. (1993). Development and psychometric evaluation of the Resilience Scale. Journal of Nursing Measurement, 1(2), 165-178.
62. Walsh, F. (2003). Family resilience: a framework for clinical practice. Family Process, 42(1), 1. doi: 10. 1111/j. 1545-5300. 2003. 00001. x.
63. Weiss, M. J. (2002). Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism, 6(1), 115-130. doi: 10. 1177/1362361302006001009.
64. Wilkinson, B. J., Newman, M. B., Shytle, R. D., Silver, A. A., Sanberg, P. R., & Sheehan, D. (2001). Family impact of Tourette's syndrome. Journal of Child & Family Studies, 10(4), 477-483. doi: 10. 1023/A: 1016713508665.
65. Willaert, K., & van den Brande, I. (Producer). (2008). Valideringsstudie Vlaams publiekscampagne 'Fit in je hoofd'. Validiteit en betrouwbaarheid van de zelfbeoordelingstest. Retrieved from http://www. iswlimits. be/isat/website/publicatie2. pdf.
66. Windle, G. (2011). What is resilience? A review and concept analysis. Reviews in Clinical Gerontology, 21, 152-169. doi: 10. 1017/S0959259810000420.