Elderly Parent Caring for an Adult with Down syndrome

Thessalonica M. Sinohin
Chapter 2
ISBN:

978-621-96514-0-0

Down Syndrome (DS), also called Trisomy 21, is generally caused by the presence of an extra chromosome 21 resulting in trisomy. Trisomy 21 is the most common kind of Down syndrome. A typical person has 46 chromosomes; a person with DS has 47. This genetic disorder is characterized by developmental delays and physical features typical of the disorder. These include weak information processing, social interaction, demonstrating language, receptive and motor skills (Gandy et al., 2020).
The presence of mental and physical disabilities within the family members can be complicated and difficult to handle. Parents of children with mental disability take on the role of primary caregiver in their child’s care (Juandó-Prats et al., 2021). Dealing and taking care of children with chronic illness, mental retardation and handicapped may bring painful experiences to the parents, as well as to the other members of the family. According to the family systems perspective, attributes of each family member influence the relationship, roles and function of the family because all parts of the system are interconnected (White, Klein & Martin, 2015). If one member of the system isn’t functioning well, the whole system will struggle.

 

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.

Bowen, M. (1978). Family therapy in clinical practice. New York: Jason Aronson.

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

Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. Journal of intellectual disability research, 49(6),    405-418.

Hsieh, Y. C., Chiu, H. C., & Lin, C. C. (2006). Family communication and parental influence on children’s brand attitudes. Journal of Business Research, 59(10-11), 1079-1086.

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.

Krauss, M. W. (1993). Child-related and parenting stress: Similarities and differences between mothers and fathers of children with disabilities. American Journal on Mental Retardation, 97, 393–404.

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

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

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 chapter:

Sinohin, T.M. (2021). Elderly parent caring for an adult with down syndrome. In: R.M. Velasco & K.J.G. Cayamanda (pp. 124-139). The World in Different Perspectives: Rebuilding Lessons after a Crisis. Institute of Industry and Academic Research Incorporated. https://doi.org/10.53378/10.21.001

Other chapters

Scroll to Top