Abstract
Family interaction and support play a critical role in raising a child with a neurodevelopmental disorder (NDD) of brain function and growth. Although the negative effects of NDD on the family, including parental distress, have been widely studied less is known about the structure of resilience in these families, or their capacity to cope. The current study attempts to quantitatively define this complex construct, with reference to Walsh’s (2003) Family Resilience Framework. Results from an online survey of 155 female caregivers of children diagnosed with an autism spectrum disorder, intellectual disability, specific learning or communication difficulty highlighted the individual and combined contribution of three family processes—belief systems, organisational patterns and communication skills—to resilience. Regression analysis revealed that parental distress, directly associated with problematic communication patterns, was a significant (p < .01) impediment to family resilience. Facilitators of resilience included positive belief systems (i.e. positive perceptions of a child’s disability and general outlook) along with a parental organisational style characterised by high nurturing. However, the combined contribution of these variables accounted for only 35 % of the variance in resilience scores, suggesting that further work is needed to operationalise the resilience process. Large-scale and longitudinal data will also help to determine resilience trajectories over time and in different family contexts.
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References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington: American Psychiatric Publishing.
Aran, A., Shalev, R. S., Biran, G., & Gross-Tsur, V. (2007). Parenting style impacts on quality of life in children with cerebral palsy. The Journal of Paediatrics, 151, 50–61.
Behr, S. K., Murphy, D. L., & Summers, J. A. (1992). User’s manual: Kansas Inventory of Parental Perceptions (KIPP). Lawrence, Kansas: Beach Center of Families and Disability.
Birnbaum, H. (2004). Human research and data collection via the intent. Annual Review of Psychology, 55, 805–832.
Block, J. (1965). The child rearing practices report (CRPR). Berkley: University of California.
Cripe, C.T. (2013). Family resilience, parental resilience and stress mediation in families with autistic children. (Doctoral dissertation, Northcentral University).
Dale, E., Jahoda, A., & Knott, F. (2006). Mothers’ attributions following their child’s diagnosis of autism spectrum disorder: exploring links with maternal levels of stress, depression and expectations about their child’s future. Autism: The International Journal of Research and Practice, 10, 463–479.
De Haan, L. G., Hawley, D. R., & Deal, J. E. (2002). Operationalizing family resilience: a methodological strategy. The American Journal of Family Therapy, 30, 275–291.
Dekker, M. C., Nunn, R., & Koot, H. M. (2002). Psychometric properties of the revised developmental behaviour checklist scales in Dutch children with intellectual disability. Journal of Intellectual Disability Research, 46, 61–77.
Emerson, E., & Giallo, R. (2014). The wellbeing of siblings of children with disabilities. Research in Developmental Disabilities, 35, 2085–92.
Galea, S., & Tracy, M. (2007). Participation rates in epidemiologic studies. Annals of Epidemiology, 17, 643–653.
Garcia, F., & Garcia, E. (2009). Is authoritative always the optimum parenting style? evidence from Spanish families. Adolescence, 44, 101–121.
Giallo, R., Roberts, R., Emerson, E., Wood, C., & Gavidia-Payne, S. (2014). The emotional and behavioural functioning of siblings of children with special health care needs across childhood. Research in Developmental Disabilities, 35, 814–825.
Greeff, A., & Nolting, C. (2013). Resilience in families of children with developmental disabilities. Families, Systems & Health, 31, 396–405.
Green, S. E. (2007). “We’re tired, not sad”: Benefits and burdens of mothering a child with a disability. Social Science and Medicine, 64, 150–163.
Hastings, R. P. (2003). Child behaviour problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47, 231–237.
Hastings, R. P., Allen, R., McDermott, K., & Still, D. (2002). Factors related to positive perceptions in mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 269–275.
Hastings, R. P., Beck, A., & Hill, C. (2005). Positive contributions made by children with an intellectual disability in the family: mothers’ and father perceptions. Journal of Intellectual Disabilities, 9, 155–165.
Henry, C. S., Morris, A. S., & Harrist, A. W. (2015). Family resilience: moving into the third wave. Family Relations, 64, 22–43.
Herring, S., Grey, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50, 874–882.
Jellet, R., Wood, C. E., Giallo, R., & Seymore, M. (2015). Family functioning and behaviour problems in children with autism spectrum disorders: the mediating role of the parent. Clinical Psychologist, 19, 39–48.
Jones, L., Hastings, R. P., Totsika, V., Keane, L., & Rhule, N. (2014). Child behaviour problems and parental well-being in families of children with autism: the mediating role of mindfulness and acceptance. American Journal on Intellectual and Developmental Disabilities, 119, 171–185.
Kayfitz, A. D., Gragg, M. N., & Orr, R. R. (2010). Positive experiences of mothers and fathers of children with autism. Journal of Applied Research in Intellectual Disabilities, 23, 337–343.
Lovibond, S. H., & Lovibond, P. F. (2005). Manual for the Depression, Anxiety and Stress Scales (2nd ed.). Psychology Foundations: Sydney.
McConnell, D., Savage, A., & Breitkreuz. (2014). Resilience in families raising a child with disabilities and behaviour problems. Research in Developmental Disabilities, 35, 833–848.
Meadan, H., Halle, J. W., & Ebata, A. T. (2010). Families with children who have autism spectrum disorders: stress and support. Council for Exceptional Children, 77, 7–36.
Minnes, P., Perry, A., & Weiss, A. (2015). Predictors of distress and wellbeing in parents of young children with developmental delays and disabilities: the importance of parent perceptions. Journal of Intellectual Disability, 59, 551–560.
Mitchell, D. B., & Hauser-Cram, P. (2010). Early childhood predictors of mothers and fathers relationships with adolescents and developmental disabilities. Journal of Intellectual Disability Research, 54, 487–500.
Monod, S., Brennan, M., Rochat, E., Martin, E., Rochat, S., & Büla, C. J. (2011). Instruments measuring spirituality in clinical research: a systematic review. Journal of General Internal Medicine, 26, 1345–1357.
Msall, M. E., DiGaudio, K., Rogers, B. T., LaForest, S., Catanzaro, N. L., Campbell, J., Wilczenski, F., & Duffy, L. C. (1994). The Functional Independence measure for Children (WeeFIM). conceptual basis and pilot use in children with developmental disabilities. Clinical Pediatr (Phila), 33, 421–30.
Osman, A., Wong, J. L., Bagge, C. L., Freedenthal, S., Gutierrez, P. M., & Lozano, G. (2012). The depression anxiety stress scales- 21 (DASS-21): further examination of dimensions, scale reliability and correlates. Journal of Clinical Psychology, 68, 1322–1338.
Öst, L. (2008). Efficacy of the third wave of behavioural therapies: a systematic review and meta-analysis. Behaviour Research and Therapy, 46, 296–321.
Patterson, J. M. (2002). Understanding family resilience. Journal of Clinical Psychology, 58, 233–246.
Peer, J. W., & Hillman, S. B. (2014). Stress and resilience for parents of children with intellectual and developmental disabilities: a review of key factors and recommendations for practitioners. Journal of Policy and Practice in Intellectual Disabilities, 11, 92–98.
Rainey, L., van Nispen, R., van der Zee, C., & van Rens, G. (2014). Measurement properties of questionnaires assessing participation in children and adolescents with a disability: A systematic review. Quality of Life Research, 23, 2793–808.
Rickel, A., & Biasatti, L. L. (1982). Modification of the block child rearing practices report. Journal of Clinical Psychology, 38, 129–134.
Rolland, J., & Walsh, F. (2006). Facilitating family resilience with childhood illness and disability. Current Opinion in Paediatrics, 18, 527–583.
Ruiz-Robledillo, N., Sariñana-García, P., Pérez-Blasco, J., González-Bono, B., & Moya-Albiol, L. (2015). A mindfulness based program improves health in caregivers of people with Autism Spectrum Disorder: a pilot study. Mindfulness, 6, 767–777.
Sixbey, M. T. (2005). Development of the family resilience assessment scale to identify family resilience constructs. (Doctorate Dissertation, University of Florida, America).
Stainton, T., & Besser, H. (1998). The positive impact of children with an intellectual disability on the family. Journal of Intellectual and Developmental Disability, 23, 57–70.
Taffe, J. R., Gray, K. M., Einfeld, S. L., Dekker, M. C., Koot, H. M., Emerson, E., Koskentausta, T., & Tonge, B. J. (2007). Short form of the developmental behaviour checklist. American Journal on Mental Retardation, 112, 31–39.
Thompson, S., Hiebert-Murphy, D., & Trute, B. (2012). Parental perceptions of family adjustment in childhood developmental disabilities. Journal of Intellectual Disability, 17, 24–37.
Torres Fernandez, I., Schwartz, J. P., Chin, H., & Dickson, G. (2013). Family resilience and parenting. In D. S. Becvar (Ed.), Handbook of family resilience (pp. 3–16). New York: Springer.
van de Mortel, T. F. (2008). Faking it: social desirability response bias in self-report research. Australian Journal of Advanced Nursing, 25, 40–48.
Viana, M. C., Gruber, M. J., Shahly, V., Alhamzawi, A., Alonso, J., Andrade, L. H., et al. (2013). Family burden related to mental and physical disorders in the world: results from the WHO World Mental Health (WMH) surveys. Rev Bras Psiquiatr., 35, 115–25.
Voysey Paun, M. (2006). A constant burden: The reconstitution of family life. Burlington: Ashgate Publishing.
Walsh, F. (2003). Family resilience: a framework for clinical practice. Family Process, 42, 1–18.
Walsh, F. (2006). Strengthening family resilience (2nd ed.). New York: The Guilford Press.
Weitjers, B., Baumgartner, H., & Schillewaet, N. (2013). Reversed item bias: an integrative model. Psychological Methods, 18(3), 320–334.
Woolfson, L., & Grant, E. (2006). Authoritative parenting and parental stress in parents of pre-school and older children with developmental disabilities. Child: Care, Health & Development, 32, 177–184.
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All procedures performed were in accordance with the ethical standards of the University of Adelaide Human Research Ethics Committee and the NHMRC National Statement on Ethical Conduct in Human Research.
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Leone, E., Dorstyn, D. & Ward, L. Defining Resilience in Families Living with Neurodevelopmental Disorder: A Preliminary Examination of Walsh’s Framework. J Dev Phys Disabil 28, 595–608 (2016). https://doi.org/10.1007/s10882-016-9497-x
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DOI: https://doi.org/10.1007/s10882-016-9497-x