Elderly parent caring for an adult with Down syndrome: A case study

Thessalonica M. Sinohin

Volume 1, Issue 3, September 2021

Abstract

The presence of mental and physical disabilities within the family members can be complicated to handle. A child with a mental disability has different demands than an adult with the same disability. However, an old-aged person raising an adult child with Down syndrome with occasional epileptic seizures is a whole different experience. Thus, the purpose of this case study is to examine the unique relationship, challenges, and demands of an elder parent caring for an adult child with a life-long mental illness. The family case gave many valuable insights into the challenges and struggles as a family under trial who find strength through faith, within themselves and among the circle of support, adapt and handle the stresses accompanying daughter’s disability. The story also illustrated the hardships experienced by the father as the only caregiver of a mentally disabled daughter. Despite the difficulties experienced by the father, it was shown through the result of his Parental Stress Test that he is experiencing a low level of stress. His coping mechanism, such as his faith and perception in life and the support received from the people around him, made him positive and expectant of what the future may bring him and his daughter. It is recommended that the parents arrange legal assistance and financial plan as early as possible. The government should have supporting services that cater to the needs of the family’s preparation for the future, such as free legal consultation, family budgeting workshops, and health insurance.

Keywords

Author information & Contribution

Disclosure statement

Funding

Institutional Review Board Statement

AI Declaration

Notes

Acknowledgement

References

Aydın, A. & Yamaç, A. (2014). The relations between the acceptance and child- rearing attitudes of parents of children with mental disabilities. Eurasian Journal of Educational Research, 54, 79-98.

Berry, JD, & Jones, W,H, (1995) The Parental Stress Scale : initial psychometric evidence. Journal of Social and Personal Relationships, 12, 463 – 472.

Boehm, T.L., Carter, E.W. (2019) Family quality of life and its correlates among parents of children and adults with intellectual disability. Am. J. Intellect. Dev. Disabil. 124 (2), 99–115.

Cuskelly, M., Hauser-Cram, P. and Van Riper, M. (2009) Families of Children with Down Syndrome: What we know and what we need to know, Down Syndrome and Practice, Advance Online Publication, Vol. 12, pp. 105-113

Desriyani, Y., Nurhidayah, I., & Adistie, F. (2019). Burden of parents in children with disability at Sekolah Luar Biasa Negeri Cileunyi. NurseLine Journal, 4(1), 21–30. https://doi.org/10.19184/nlj.v4i1.8696

Gandy, K. C., Castillo, H. A., Ouellette, L., Castillo, J., Lupo, P. J., Jacola, L. M., … & Gramatges, M. M. (2020). The relationship between chronic health conditions and cognitive deficits in children, adolescents, and young adults with down syndrome: A systematic review. PloS one, 15(9), e0239040.

Goudie, A., Havercamp, S., Jamieson, B., & Sahr, T. (2013). Assessing functional impairment in siblings living with children with disability. Pediatrics, 132(2), e476-83. doi: 10.1542/peds.2013-0644

Grieco, J., Pulsifer, M., Seligsohn, K., Skotko, B., & Schwartz, A. (2015). Down syndrome: Cognitive and behavioral functioning across the lifespan. American Journal of Medical Genetics Part 6 (Seminar in Medical Genetics), 169C, 135–149. https://doi.org/10.1002/ajmg.c.31439

Hou, Y., Stewart, L., Iao, L., & Wu, C. (2018). Parenting stress and depressive symptoms in Taiwanese mothers of young children with ASD spectrum disorder: Association with children’s behavioral problems. Journal of Applied Research in Intellectual Disabilities, 31(6), 1113–1121.

Juandó-Prats, C., James, E., Bilder, D. A., McNair, L., Kenneally, N., Helfer, J., & Rico, S. (2021). DRAVET ENGAGE. Parent caregivers of children with Dravet syndrome: Perspectives, needs, and opportunities for clinical research. Epilepsy & Behavior, 122, 108198.

Keller, M. N., & Noone, R. J. (Eds.). (2019). Handbook of Bowen Family Systems Theory and Research Methods: A Systems Model for Family Research. Routledge.

Lima-Rodríguez, J.S., Baena-Ariza, M.T., Domínguez-Sanchez, I., Lima-Serrano, M., 2017. Intellectual disability in children and teenagers: influence on family and family health. Systematic review. Enfermiria Clin. 28 (2), 89–102.

Lott, I.T., Head, E., 2019. Dementia in Down syndrome: unique insights for Alzheimer disease research. Nat. Rev. Neurol. 15, 135–147. https://doi.org/10.1038/s41582- 018-0132-6

Luijkx, J., Van der Putten, A.A.J., Vlaskamp, C., 2017. Time use of parents raising children with severe or profound intellectual and multiple disabilities. Child Care Health Dev. 43 (4), 518–526.

Luitwieler, N., Luijkx, J., Salavati, M., Van der Schans, C.P., Van der Putten, A.J., Waninge, A. (2021) Variables related to the quality of life of families that have a child with severe to profound intellectual disabilities: A systematic review. Heliyon 7 (7) https://doi.org/10.1016/j.heliyon.2021.e07372

Mulya, A. P., Yani, D. I., & Ropi, H. (2019). Quality of life school-age children with attention deficit hyperactivity disorder (ADHD) in SLB C Bandung. Asian Community Health Nursing Research, 1(1), 36–40.

Murray, C. E. (2006). Controversy, constraints, and context: Understanding family violence through family systems theory. The Family Journal, 14(3), 234-239.

Nock, M. K., Michel, B. D., & Photos, B. I. (2007). Single-Case Research Designs. Corwin Professional development book publisher. https://us.corwin.com/sites/ default/files/upm-binaries/19353_Chapter_22.pdf

Pang, Y. (2010). Facilitating Family Involvement in Early Intervention to Preschool Transition. School Community Journal, 20(2), 183-198.

Roberts, A. R., & Ottens, A. J. (2005). The seven-stage crisis intervention model: A road map to goal attainment, problem solving, and crisis resolution. Brief Treatment and Crisis Intervention, 5, 329–339.

Rutter, M. (2013). Annual research review: Resilience–clinical implications. Journal of child psychology and psychiatry, 54(4), 474-487.

Sangawi, H., Adams, J., & Reissland, N. (2018). The impact of parenting styles on children developmental outcome: The role of academic self-concept as a mediator. International Journal of Psychology, 53(5), 379–387. https://doi.org/10.1002/ijop.12380

Sherman, S. L., Allen, E. G., Bean, L. H., & Freeman, S. B. (2007). Epidemiology of Down syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 13, 221–227. https://doi.org/10.1002/mrdd.20157.

Suzuki, K., Kobayashi, T., Moriyama, K., Kaga, M., Hiratani, M., Watanabe, K., & Inagaki, M. (2015). Development and evaluation of a parenting resilience elements questionnaire (PREQ) measuring resiliency in rearing children with developmental disorders. PloS One, 10(12), Article e0143946. https://doi.org/10.1371/ journal.pone.0143946

Walsh, F. (2003). Family resilience: A framework for clinical practice. Family process, 42(1), 1-18.

White, J.M., Klein, D.M. and Martin, T.F. (2015). Family Theories: An Introduction, Fourth Edition, Sage Publication Incorporated

Widyawati, Y., Scholte, R. H. J., Kleemans, T., & Otten, R. (2021). Positive parenting and its mediating role in the relationship between parental resilience and quality of life in children with developmental disabilities in Java Island, Indonesia. Research in Developmental Disabilities, 112, 103911.

Cite this article:

Sinohin, T.M. (2021). Elderly parent caring for an adult with Down syndrome: A case study. International Review of Social Sciences Research, 1(3), 62-77. https://doi.org/10.53378/348816