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Research Article

Parental Stress in Families of Children with a Genetic Disorder/Disability and the Resiliency Model of Family Stress, Adjustment, and Adaptation

, Ph.D., MSN, , Ph.D., MSW, , Ph.D., MSN, , BA, MSW, , Ed.D., MA & , MD, MS
Pages 24-44 | Received 07 Jul 2011, Accepted 13 Nov 2011, Published online: 17 Jan 2012

REFERENCES

  • Abidin, R. R. (1995). Parenting stress index: Professional manual (3rd ed.). Lutz, FL: Psychological Assessment Resources.
  • Ashley-Koch, A., Yang, Q., & Olney, R. S. (2000). Sickle hemoglobin (Hb S) allele and sickle cell disease: A huge review. American Journal of Epidemiology, 151(9), 839–845.
  • Ashwal, S., Russman, B. S., Blasco, P. A., Miller, G., Sandler, A., Shevell, M., & Stevenson, R. (2004). Practice parameter: Diagnostic assessment of the child with cerebral palsy: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology, 62, 851–863.
  • Baker-Ericzén, M. J., Brookman-Frazee, L., & Stahmner, A. (2005). Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research & Practice for Persons with Severe Disabilities, 30(4), 194–204.
  • Barakat, L. P., Patterson, C. A., Daniel, L. C., & Dampier, C. (2008). Quality of life among adolescents with sickle cell disease: Mediation of pain internalizing symptoms and parenting stress. Health & Quality of Life Outcomes, 6, 1–9. Retrieved August 10, 2010, from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2526071/pdf/1477-7525-6-60.pdf
  • Boni, L. C., Brown, R. T., Davis, P. C., Hsu, L., & Hopkins, K. (2001). Social information processing and magnetic resonance imaging in children with sickle cell disease. Journal of Pediatric Psychology, 26(5), 309–319.
  • Canfield, M. A., Honein, M. A., Yuskiv, N., Xing, J., Mai, C. T., Collins, J. S., . . . Kirby, R.S. (2006). National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999–2001. Birth Defects Research (Part A), 76, 747–756.
  • Corcoran, J. & Pillai, V. (2009). A review of the research on solution-focused therapy. The British Journal of Social Work, 39(2), 234–242.
  • Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(Part 3), 266–280.
  • Farmer, J. E., Marien, W. E., Clark, M. J., Sherman, A., & Selva, T. J. (2004). Primary care supports for children with chronic health conditions: Identifying and predicting unmet family needs. Journal of Pediatric Psychology, 29(5), 355–367.
  • Foss, C., & Ellefsen, B. (2002). The value of combining qualitative and quantitative approaches in nursing research by means of method triangulation. Journal of Advanced Nursing, 40(2), 242–248.
  • Fraser, M. W., Kirby, L. D., & Smokowski, P. R. (2004). Risk and resilience in childhood. In M. W. Fraser (Ed.), Risk and resilience in childhood: An ecological perspective (pp. 13–66). Washington, DC: NASW Press.
  • Geschwind, D. H., & Levitt, P. (2007). Autism spectrum disorders: Developmental disconnection syndromes. Current Opinion in Neurobiology, 17,103–111.
  • Glenn, S., Cunningham, C., Poole, H., Reeves, D., & Weindling, M. (2009). Maternal parenting stress and its correlates in families with a young child with cerebral palsy. Child: Care, Health & Development, 35(1), 71–78.
  • Graff, J. C., Hankins, J. S., Hardy, B. T., Hall, H. R., Roberts, R. J., & Neely-Barnes, S. L. (2010). Exploring parent-sibling communication in families of children with sickle cell disease. Issues in Comprehensive Pediatric Nursing, 33(2), 101–123.
  • Hall, H. R., & Graff, J. C. (2010). Parenting challenges in families of children with autism: A pilot study. Issues in Comprehensive Pediatric Nursing, 33(4), 187–204.
  • Hall, H. R., & Graff, J. C. (2011). The relationships among adaptive behaviors of children with autism, family support, parenting stress, and coping. Issues in Comprehensive Pediatric Nursing, 34(1), 4–25.
  • Hastings, R. P., Allen, R., McDermott, K., & Still, D. (2002). Factors related to positive perceptions in parents of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15(3), 269–275.
  • Hastings, R. P., & Beck, A. (2004). Practitioner review: Stress intervention for parents for children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338–1349.
  • Hastings, R. P., & Johnson, E. (2001). Stress in the UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders, 31(3), 327–336.
  • Hernigou, P., Galacteros, F., Bachir, D., & Goutallier, D. (1991). Deformities of the hip in adults who have sickle-cell disease and had avascular necrosis in childhood. A natural history of fifty-two patients. The Journal of Bone Joint Surgery, 73(1), 81–92.
  • Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288.
  • Jones, J., & Passey, J. (2004). Family adaptation, coping and resources: Parents of children with developmental disabilities and behaviour problems. Journal on Developmental Disabilities, 11(1), 31–46.
  • Mactavish, J. B., & Schleien, S. J. (2004). Re-injecting spontaneity and balance in family life: Parents' perspectives on recreation in families that include children with developmental disability. Journal of Intellectual Disability Research, 48(Part 2), 123–141.
  • McCubbin, M. A., & McCubbin, H. I. (1993). Families coping with illness: The Resiliency Model of Family Stress, Adjustment, and Adaptation. In C.B. Danielson, B. Hamel-Bissell, & P. Winstead-Fry (Eds.), Families, health, and illness: Perspectives on coping and intervention (pp. 21–63). St. Louis, MO: C.V. Mosby.
  • Mirza, I., Tareen, A., Davidson, L. L., & Rahman, A. (2009). Community management of intellectual disabilities in Pakistan: A mixed methods study. Journal of Intellectual Disability Research, 53(Part 6), 559–570.
  • Neely-Barnes, S. L. & Dia, D. A. (2008). Families of children with disabilities: A review of literature and recommendations for interventions. Journal of Early and Intensive Behavior Intervention, 5(3), 93–107.
  • Neely-Barnes, S. L., Graff, J. C., Roberts, R. J., Hall, H. R., & Hankins, J. S. (2010). “It's our job”: Qualitative study of family responses to ableism. Intellectual & Developmental Disabilities, 48(4), 245–258.
  • Oliver-Carpenter, G., Barach, I., Crosby, L. E., Valenzuela, J., & Mitchell, M. J. (2011). Disease management, coping, and functional disability in pediatric sickle cell disease. Journal of The National Medicine Association, 103(2), 131–137.
  • Onwuegbuzie, A.J., & Combs, J.P. (2010). Emergent data analysis techniques in mixed methods research: A synthesis. In A. Tashakkori & C. Teddlie (Eds.), Sage handbook of mixed methods in social & behavioral research (2nd ed.). (pp. 397–430). Thousand Oaks, CA: Sage.
  • Pakula, A.T., Van Naarden Braun, K., & Yeargin-Allsopp, M. (2009). Cerebral palsy: Classification and epidemiology. Physical Medicine & Rehabilitation Clinics of North America, 20(3), 425–452.
  • Perry, A. (2004). A model of stress in families of children with developmental disabilities: Clinical and research applications. Journal on Developmental Disabilities, 11(1), 1–16. Retrieved August 20, 2008, from www.oadd.org/publications/journal/issues/vol11no1/download/perry.pdf
  • QSR International Pty Ltd. (2006). NVivo7. [Computer software]. Retrieved May 15, 2007, from http://www.qsrinternational.com.
  • Rao, P. A., & Beidel, D. C., (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4), 437–451.
  • Regan, R., & Willatt, L. (2010). Mental retardation: Definition, classification and etiology. In S. J. L. Knight (Ed.), Genetics of mental retardation: An overview encompassing learning disability and intellectual disability (pp. 16–30). Oxford, United Kingdom: Karger.
  • Roesch, S. C., Weiner, B., & Vaughn, A. A. (2002). Cognitive approaches to stress and coping. Current Opinion in Psychiatry, 15(6), 627–632.
  • Scantlebury, N., Mabbott, D., Janzen, L., Rockel, C., Widjaja, E., Jones, G., Kirby, M., . . . Odame, I. (2011). White matter integrity and core cognitive function in children diagnosed with sickle cell disease. Journal of Pediatric Hematology/Oncology, 33(3), 163–171.
  • Sipal, R. F., Schuengel, C., Voorman, J. M., Van Eck, M., & Becher, J. G. (2010). Course of behavior problems of children with cerebral palsy: The role of parental stress and support. Child: Care, Health, and Development, 36(1), 74–84.
  • Solevita, T., Italiana, N., & 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.
  • Stainton, T., & Besser, H. (1998). The positive impact of children with an intellectual disability on the family. Journal of Intellectual & Developmental Disability, 23(1), 57–70.
  • Teddlie, C., & Tashakkori, A. (2003). Major issues and controversies in the use of mixed methods in the social and behavioral sciences. In A. Tashakkori & C. E. Teddlie (Eds.), Handbook of mixed methods in the social and behavioral sciences (pp. 3–50). Thousand Oaks, CA: Sage.
  • Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship between behaviours exhibited by children with autism and maternal distress. Journal of Intellectual & Developmental Disability, 29(1), 16–26.
  • Trepper, T. S., Dolan, Y., McCollum, E. E. & Nelson, T. (2006). Steve de Shazer and the future of solution focused therapy. Journal of Marital and Family Therapy, 32(2), 133–139.
  • Trute, B., Benzies, K.M., Worthington, C., Reddon, J.R., & Moore, M. (2010). Accentuate the positive to mitigate the negative: Mother psychological coping resources and family adjustment in childhood disability. Journal of Intellectual and Developmental Disability, 35(1), 36–43.
  • Trute, B., Hiebert-Murphy, D., & Levine, K. (2007). Parental appraisal of the family impact of childhood developmental disability: Times of sadness and times of joy. Journal of Intellectual and Developmental Disability, 32(1), 1–9.
  • Veenstra-VanderWeele, J., & Cook, E. H. (2004). Molecular genetics of autism spectrum disorder. Molecular Psychiatry, 9, 819–832.
  • Winston, K. A., Dunbar, S. B., Reed, C. N., & Francis-Connolly, E. (2010). Mothering occupations when parenting children with feeding concerns: A mixed methods study. Canadian Journal of Occupational Therapy, 77(3), 181–189.
  • Ylven, R., Bjorck-Akesson, E., & Granlund, M. (2006). Literature review of positive functioning in families with children with a disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4), 253–270.
  • Zuna, N. I., Turnbull, A., & Summers, J. A. (2009). Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6(1), 25–31.

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