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Journal of Autism and Developmental Disorders

, Volume 49, Issue 2, pp 738–749 | Cite as

The Role of Grandparents in Supporting Families of Children with Autism Spectrum Disorders: A Family Systems Approach

  • P. PrendevilleEmail author
  • W. Kinsella
Original Paper
  • 342 Downloads

Abstract

A family systems approach is required to identify the needs of families of children with autism. This paper explores how grandparents support children with autism and their parents using a family systems perspective. A thematic analysis of eighteen semi-structured interviews was conducted with participants from nine families, capturing experiences of both parents’ and grandparents’. Themes identified were family recalibrating; strengthening the family system; and current needs and future concerns of grandparents. The views of families indicated the overwhelming need to acknowledge the grandparental role in supporting families that strengthen the family system by supporting the needs of a child with autism. Findings revealed that grandfathers have a calming role in these families where children have significant behavioural difficulties.

Keywords

Autism Grandparents Parents Grandfathers Family systems approach Family systems theory 

Notes

Acknowledgements

The authors would like to thank the families who generously took time to share their experiences. The authors acknowledge the support of Geraldine Bond and Mary Fitzgerald, both in the Brothers of Charity Cork, who assisted in the preparation of this research. This paper was completed following the submission of a Masters dissertation by the first author.

Author Contributions

PP conceived this study. She designed, coordinated, completed and analysed interviews. She also drafted the manuscript. WK supervised the design of this research. He reviewed interview analysis for consistency and assisted in the draft the manuscript. All authors read and approved the final manuscript.

Compliance with Ethical Standards

Conflict of interest

Author A declares that she has no conflict of interest. Author B declares that he has no conflict of interest.

Ethical Approval

All procedures performed in this study were in accordance with the ethical standards of the institutional research committee to which the authors are affiliated, and with the 1964 Helsinki declaration and its amendments.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

References

  1. Ayvazoglu, N. R., Kozub, F. M., Butera, G., & Murray, M. J. (2015). Determinants and challenges in physical activity participation in families with children with high functioning autism spectrum disorder from a family systems perspective. Research in Developmental Disabilities, 47, 93–105.  https://doi.org/10.1016/j.ridd.2015.08.015.Google Scholar
  2. Barnett, M. A., Scaramella, L. V., Neppl, T. K., Ontai, L. L., & Conger, R. D. (2010). Intergenerational relationship quality, gender and grandparents involvement. Family Relations, 59(1), 28–44.  https://doi.org/10.1111/j.1741-3729.2009.00584.x.Google Scholar
  3. Benson, P. R., & Karlof, K. L. (2009). Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication. Journal of Autism Developmental Disorders, 39, 350–362.  https://doi.org/10.1007/s10803-008-0632-0.Google Scholar
  4. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.  https://doi.org/10.1191/1478088706qp063oa.Google Scholar
  5. Broady, T. R., Stoyles, G. J., & Morse, C. (2017). Understanding carers’ lived experience of stigma: The voice of families with a child on the autism spectrum. Health and Social Care in the Community, 25(1), 224–233.  https://doi.org/10.1111/hsc.12297.Google Scholar
  6. Brown, K., Churchill, V., Laghaie, E., Ali, F., Fareed, S., & Immergluck, L. (2017). Grandparents raising grandchild with disabilities: Assessing health status, home environment and impact of a family support case management model. International Public Health Journal, 9(2), 181–188.Google Scholar
  7. Canary, H. (2008). Creating supportive connections: A decade of research on support for families of children with disabilities. Health Communication, 23(5), 413–426.  https://doi.org/10.1080/10410230802342085.Google Scholar
  8. Cox, M. J., & Paley, B. (1997). Families as systems. Annual Review of Psychology, 48, 243–267.  https://doi.org/10.1111/1467-8721.01259.Google Scholar
  9. Cridland, E. K., Jones, S. C., Magee, C. A., & Caputi, P. (2014). Family-focused autism spectrum disorder research: A review of the utility of family systems approaches. Autism, 18, 213–222.  https://doi.org/10.1177/1362361312472261.Google Scholar
  10. Daniels, J. L., Forssen, U., Hiltman, C. M., Cnattingius, S., Savitz, D. A., Feychting, M., & Sparen, P. (2008). Parental psychiatric disorders associated with autism spectrum disorders in the offspring. Pediatrics, 121(5), 1162–1357.  https://doi.org/10.1542/peds.2007-2296.Google Scholar
  11. Divan, G., Vajartkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in Goa, India. Autism Research, 5, 190–200.  https://doi.org/10.1002/aur.1225.Google Scholar
  12. Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatisation of parents of children with autism spectrum disorder. Sociology of Health and Illness, 31(7), 1011–1029.  https://doi.org/10.1111/j.1467-9566.2009.01174.x.Google Scholar
  13. Freedman, B. H., Kalb, L. G., Zablotsky, B., & Stuart, E. A. (2011). Relationship status among parents of children with autism spectrum disorders: A population-based study. Journal of Autism and Developmental Disorders.  https://doi.org/10.1007/s10803-011-1269-y.Google Scholar
  14. Galvin, K. M., Dickson, F. C., & Marrow, S. R. (2005). Systems theory: Patterns and (w)holes in family communication. In D. Braithwaite & L. A. Baxter (Eds.), Engaging theories in family communication: Multiple perspectives (pp. 309–324). Thousand Oaks: SAGE.Google Scholar
  15. Gau, S. S., Chou, M., Chiang, H., Lee, J., Wong, C., Chou, W., et al. (2011). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6, 263–270.Google Scholar
  16. Glasberg, B. A., & Harris, S. L. (1997). Grandparents and parents assess the development of their child with autism. Child and Family Behaviour Therapy, 19(2), 17–27.Google Scholar
  17. Habib, A., Prendeville, P., Abdussabur, A., & Kinsella, W. (2017). Pakistani mothers’ experiences of parenting a child with autism spectrum disorder in Ireland. Educational and Child Psychology, 34(2), 67–79.Google Scholar
  18. Harper, A., Taylor Dyches, T., Harper, J., Olsen Roper, S., & South, M. (2013). Respite care, marital quality, and stress in parents of children with autism spectrum disorder. Journal of Autism and Development Disorders, 43, 2604–2616.  https://doi.org/10.1007/s10803-013-1812-0.Google Scholar
  19. Hastings, R. (1997). Grandparents of children with disabilities: A review. International Journal of Disability, Development and Education, 44(4), 329–340.  https://doi.org/10.1080/0156655970440404.Google Scholar
  20. Head, L. S., & Abbeduto, L. (2007). Recognising the role of parents in developmental outcomes: A systems approach to evaluating the child with developmental disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 293–301.  https://doi.org/10.1002/mrdd.20169.Google Scholar
  21. Hillman, J. (2007). Grandparents of children with autism: A review with recommendations for education, practice and policy. Educational Gerontology, 33(6), 513–527.  https://doi.org/10.1080/03601270701328425.Google Scholar
  22. Hillman, J., Marvin, A. R., & Anderson, C. M. (2016). The experience, contributions, and resilence of grandparents of children with autism spectrum disorder. Journal of Intergenerational Relationships, 14(2), 76–92.  https://doi.org/10.1080/15350770.2016.1160727.Google Scholar
  23. Hillman, J. L., Wentzel, M. C., & Anderson, C. M. (2017). Grandparents’ experience of autism spectrum disorder: Identifying primary themes and needs. Journal of Autism and Development Disorders, 47, 2957–2968.  https://doi.org/10.1007/s10803-017-3211-4.Google Scholar
  24. Hodgetts, S., Zwaigenbaum, L., & Nicholas, D. (2015). Profile and predictors of service needs for families of children with autism spectrum disorders. Autism, 19(6), 673–683.  https://doi.org/10.1177/1362361314543531.Google Scholar
  25. Johnson, N., Freen, M., Feetham, S., & Simpson, P. (2011). Autism spectrum disorder: Parenting stress, family functioning and health-related quality of life. Families, Systems, and Health, 29(3), 232–252.  https://doi.org/10.1037/a0025341.Google Scholar
  26. Kahana, E., Lee, J. E., Kahana, J., Goler, T., Kahana, B., Shick, S., et al. (2015). Childhood autism and proactive family coping: Intergenerational perspectives. Journal of Intergenerational Relationship, 13(2), 150–166.  https://doi.org/10.1080/15350770.2015.1026759.Google Scholar
  27. 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(4), 337–343.  https://doi.org/10.1111/j.1468-3148.2009.00539.x.Google Scholar
  28. Kazak, A. E., Rourke, M. T., & Navsaria, N. (2009). Families and other systems in pediatric psychology. In M. C. Roberts & R. G. Steele (Eds.), Handbook of pediatric psychology. New York: Guildford Press.Google Scholar
  29. Kim, H. J., Kang, H., & Johnston-Motoyana, M. (2017). The psychological well being of grandparents who provide supplementary grandchild care: A systematic review. Journal of Family Studies, 1, 118–141.Google Scholar
  30. King, G., Baxter, D., Rosenbaum, P., Zwaigenbaum, L., & Bates, A. (2009). Belief systems of families of children with autism spectrum disorders or Down syndrome. Focus on Autism and Other Developmental Disabilities, 24(1), 50–64.  https://doi.org/10.1177/1088357608329173.Google Scholar
  31. King, S. V., Burgess, E. O., Akinyela, M., Counts-Spriggs, M., & Parker, N. (2008). The religious dimensions of the grandparent role in three-generation African American households. Journal of Religion, Spirituality and Aging, 19(1), 75–96.Google Scholar
  32. Kirby, J. N., & Sanders, M. R. (2012). Using consumer input to tailor evidence-based parenting intervention to the needs of grandparents. Journal of Child and Family Studies, 21, 626–636.  https://doi.org/10.1007/s10826-011-9514-8.Google Scholar
  33. Langley, E., Totsika, V., & Hastings, R. P. (2017). Parental relationship satisfaction in families of children with autism spectrum disorder (ASD): A multilevel analysis. Autism Research, 10, 1259–1268.  https://doi.org/10.1002/aur.1773.Google Scholar
  34. Lunn, P., & Fahey, T. (2011). Households and family structures in Ireland-A detailed statistical analysis of Census 2006. Dublin: Economic & Social Research Institute.Google Scholar
  35. Margetts, J. K., Le Couteur, A., & Croom, S. (2006). Families in a state of flux: The experience of grandparents in autism spectrum disorder. Child: Care, Health and Development, 32(5), 565–574.  https://doi.org/10.1111/j.1365-2214.2006.00671.x.Google Scholar
  36. Markoulaksis, R., Flectcher, P., & Bryden, P. (2012). Seeing the glass half full-benefits to the lived experiences of female primary caregivers of children with autism. Clinical Nurse Specialist.  https://doi.org/10.1097/NUR.0b013e31823bfb0f.Google Scholar
  37. Miller, E., Buys, L., & Woodbridge, S. (2012). Impact of disability on families: Grandparents’ perspectives. Journal of Intellectual Disability Research, 56(1), 102–110.  https://doi.org/10.1111/j.1365-2788.2011.01403.x.Google Scholar
  38. Minuchin, P. (1988). Relationships within a family: A systems perspective on development. In R. A. Hinde & J. Stevenson-Hinde (Eds.), Relationships within families: Mutual influences. Oxford: Clarendon Press.Google Scholar
  39. Mouzourou, C., Milagros-Santos, R., & Gaffney, J. S. (2011). At home with disability: One family’s three generations narrate autism. International Journal of Qualitative Studies in Education, 24(6), 693–715.  https://doi.org/10.1080/09518398.2010.529841.Google Scholar
  40. Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). My greatest joy and my greatest heartache”: Parents own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684.  https://doi.org/10.1016/j.rasd.2009.01.004.Google Scholar
  41. Neely-Barnes, S. L., & Dia, D. A. (2008). Families of children with disabilities: A review of literature and recommendations for interventions. Journal of Intensive Behaviour Intervention, 5(3), 93–107.  https://doi.org/10.1037/h0100425.Google Scholar
  42. Ooi, K. L., Ong, Y. S., Jacob, A. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric Disease and Treatment, 12, 1–18.Google Scholar
  43. Pellicano, E., Dinsmore, A., & Charman, T. (2013). A future made together: Shaping Autism research in the UK. London: Institute of Education.Google Scholar
  44. Pellicano, E., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community view and priorities from the UK. Autism, 18, 756–770.  https://doi.org/10.1177/1362361314529627.Google Scholar
  45. Polkinghorne, D. E. (2005). Language and meaning: Data collection in qualitative research. Journal of Counselling Psychology, 52(2), 137–145.  https://doi.org/10.1037/0022-0167.52.2.137.Google Scholar
  46. Ponterotto, J. G. (2005). Qualitative research in counselling psychology: A primer on research paradigms and philosophy of science. Journal of Counselling Psychology, 52(2), 126–136.Google Scholar
  47. Potter, C. A. (2016). ‘I accept my son for who he is-he has incredible character and personality’: Fathers’ positive experiences of parenting children with autism. Disability & Society, 31(7), 948–965.  https://doi.org/10.1080/09687599.2016.1216393.Google Scholar
  48. Pruitt, M. M., Willis, K., Timmons, L., & Ekas, N. V. (2016). The impact of maternal, child, and family characteristics on the daily well-being and parenting experiences of mothers of children with autism spectrum disorder. Autism, 20(8), 973–985.  https://doi.org/10.1177/1362361315620409.Google Scholar
  49. Ratcliffe, B., Wong, M., Dossetor, D., & Hayes, S. (2015). The association between social skills and mental health in school-age children with autism spectrum disorder, with and without intellectual disability. Journal of Autism and Developmental Disabilities, 45, 2487–2496.  https://doi.org/10.1007/s10803-015-2411-z.Google Scholar
  50. Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., et al. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality and Qunatity, 52, 1893–1907.Google Scholar
  51. Schlebusch, L., & Dada, S. (2018). Positive and negative cognitive appraisal of the impact of children with autism spectrum disorder. Research in Autism Spectrum Disorder, 51, 86–93.Google Scholar
  52. Schwandt, T. A. (1998). Constructivist, interpretivist approaches to human inquiry. In N. K. Denzin & Y. S. Lincoln (Eds.), The landscape of qualitative research: Theories and issues. Thousand Oaks: SAGE.Google Scholar
  53. Seligman, M., & Darling, R. B. (2007). Ordinary families, special children: A systems approach to childhood disability. New York: The Guildford Press.Google Scholar
  54. Stelle, C., Fruhauf, C. A., Orel, N., & Landry-Meyer, L. (2013). Grandparenting in the 21st century: Issues of diversity in grandparent-grandchild relationships. Journal of Gerontological Social Work, 53(8), 682–701.  https://doi.org/10.1080/01634372.2010.516804.Google Scholar
  55. Stuart, M., & McGrew, J. H. (2009). Caregiver burden after receiving a diagnosis of an autism spectrum disorder. Research in Autism Spectrum Disorders, 3(1), 86–97.Google Scholar
  56. Sullivan, A., Winograd, G., Verkuilen, J., & Fish, M. C. (2012). Children on the autism spectrum: Grandmother involvement and family functioning. Journal of Applied Research in Intellectual Disabilities, 25, 484–494.  https://doi.org/10.1111/j.1468-3148.2012.00695.x.Google Scholar
  57. Timmons, L., Ekas, N. V., & Johnson, P. (2017). Thankful thinking: A thematic analysis of gratitude letters by mothers of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 34, 19–27.Google Scholar
  58. Turnbull, A. P., Turnbull, H. R., Wehmeyer, M. L., & Shogren, K. A. (2012). Exceptional lives: Special education in today’s schools. New York: Pearson.Google Scholar
  59. Waheed, W., Woodham, A., Parker, A., Allen, G., & Bower, P. (2015). Overcoming barriers to recruiting ethnic minorities to mental health research: A typology of recruitment strategies. BMC Psychiatry, 15(1), 101.  https://doi.org/10.1186/s12888-015-0484-z.Google Scholar

Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Enable Ireland Children’s ServicesLavanagh HouseCorkIreland
  2. 2.School of EducationUniversity College DublinDublinIreland

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