Reframing Hope: The Process of Adapting Mothers to Children with Down Syndrome after Receiving a Diagnosis

Haerani Nur, Rohmah Rifani, Nurfitriany Fakhri

Abstract


This study aims to explore the experiences of mothers adapting after receiving a Down Syndrome (DS) diagnosis for their child. Utilizing a Heideggerian phenomenological approach, data was collected through in-depth interviews with 10 mothers of children with DS, focusing on their emotional responses, acceptance, and hopes. The analysis identified three main themes: initial reactions to the diagnosis and the resulting loss of hope, the process of acceptance, and managing hopes while adapting to the child's condition. The findings reveal the complex journey mothers undergo in restructuring their emotions and thoughts, underscoring the importance of diagnostic confirmation, social support, and spiritual beliefs in the acceptance process. This study contributes to a deeper understanding of mothers’ experiences following a DS diagnosis and offers insights for health professionals and support systems to better assist families during this critical period. The theme of “reframing hopes” emerged as central, facilitating mothers’ ability to adjust and maintain hope for their children’s futures.

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References


Braun, V., & Clarke, V. (2019). Thematic analysis revised. Journal of Chemical Information and Modeling, 53(9), 1689–1699.

Buyukavci, M. A., Dogan, D. G., Canaloglu, S. K., & Kivilcim, M. (2019). Experience of mothers with down syndrome children at the time of diagnosis. Archivos Argentinos de Pediatria, 117(2), 114–119. https://doi.org/10.5546/AAP.2019.114

Celik, P., & Kara Uzun, A. (2023). Stressful experiences and coping strategies of parents of young children with Down syndrome: A qualitative study. Journal of Applied Research in Intellectual Disabilities, 36(4), 881–894. https://doi.org/10.1111/jar.13108

Darla, S., & Bhat, D. (2021). Health-related quality of life and coping strategies among families with Down syndrome children in South India. Medical Journal Armed Forces India, 77(2), 187–193. https://doi.org/10.1016/j.mjafi.2020.07.010

Dias, C., Schwertner, C., Grando, D., Bidinotto, A. B., Hilgert, J. B., Schuch, J. B., de Azeredo, L. A., Bauer, M. E., & Hashizume, L. N. (2022). Caregiving of children with Down syndrome: impact on quality of life, stress, mental and oral health. Special Care in Dentistry, 42(4), 398–403. https://doi.org/10.1111/scd.12694

Eray, F., & Öpengin, E. (2023). Exploring the Impact of Special Learning Disability Diagnosis on Family Dynamics: A Parental Perspective. International Journal of Educational Research Review, 8(4), 981–990. https://doi.org/10.24331/ijere.1344731

Fuca, E., Costanzo, F., Ursumando, L., & Vicari, S. (2022). Parenting Stress in Mothers of Children with Autistic Disorder, Children with Down Syndrome and Deaf Children. Journal of Clinical Medicine, 11(5), 15. https://www.mdpi.com/2077-0383/11/5/1188

Gashmard, R., Ahmadi, F., & Kermanshahi, S. M. K. (2020). Coping strategies adopted by Iranian families of children with Down syndrome: A qualitative study. Medicine (United States), 99(28), E20753. https://doi.org/10.1097/MD.0000000000020753

Goff, B. S. N., Springer, N., Foote, L. C., Frantz, C., Peak, M., Tracy, C., Veh, T., Bentley, G. E., & Cross, K. A. (2013). Receiving the initial down syndrome Diagnosis: A comparison of prenatal and postnatal parent group experiences. Intellectual and Developmental Disabilities, 51(6), 446–457. https://doi.org/10.1352/1934-9556-51.6.446

Grane, F. M., Lynn, F., Balfe, J., Molloy, E., & Marsh, L. (2023). Down syndrome: Parental experiences of a postnatal diagnosis. Journal of Intellectual Disabilities, 27(4), 1032–1044. https://doi.org/10.1177/17446295221106151

Hippman, C., Inglis, A., & Austin, J. (2012). What is a “balanced” description? Insight from parents of individuals with Down syndrome. Journal of Genetic Counseling, 21(1), 35–44. https://doi.org/10.1007/s10897-011-9417-2

Jeter, K., & Turns, B. (2022). Grieving the Child That Never Was: Treatment of Ambiguous Loss in Parents of Children with Down Syndrome. Australian and New Zealand Journal of Family Therapy, 43(2), 243–256. https://doi.org/10.1002/anzf.1488

Korkow-Moradi, H., Kim, H. J., & Springer, N. P. (2017). Common Factors Contributing to the Adjustment Process of Mothers of Children Diagnosed With Down Syndrome: A Qualitative Study. Journal of Family Psychotherapy, 28(3), 193–204. https://doi.org/10.1080/08975353.2017.1291238

Lalor, J., Begley, C. M., & Galavan, E. (2009). Recasting Hope: A process of adaptation following fetal anomaly diagnosis. Social Science and Medicine, 68(3), 462–472. https://doi.org/10.1016/j.socscimed.2008.09.069

Lee, E. Y., Neil, N., & Friesen, D. C. (2021). Support needs, coping, and stress among parents and caregivers of people with Down syndrome. Research in Developmental Disabilities, 119(1). https://doi.org/10.1016/j.ridd.2021.104113

Lehman, A., Leach, M., & Santoro, S. L. (2021). Delivering a new diagnosis of Down syndrome: Parent experience. American Journal of Medical Genetics, Part A, 185(12), 3615–3622. https://doi.org/10.1002/ajmg.a.62408

Mou Sarkar, Sudipto Biswas, & Amit Kumar Rai. (2022). Molecular cytogenetic study of Down syndrome and it’s health care experience. World Journal of Advanced Research and Reviews, 16(2), 1093–1102. https://doi.org/10.30574/wjarr.2022.16.2.1262

Nur, H., Wagey Tairas, M. M., & Hendriani, W. (2018). The Experience of Hope for Mother with Speech Delay Children. Journal of Educational, Health and Community Psychology, 7(2), 104. https://doi.org/10.12928/jehcp.v7i2.8936

Rasendrakumar, A., Prabaharan, K., Ramanan, P. V., & Rasendrakumar, N. (2021). Parents’ experience of receiving their child’s diagnosis of Down’s syndrome. Karnataka Pediatric Journal, 35, 110–114. https://doi.org/10.25259/kpj_23_2020

Rodrigues, S. de A., de Carvalho, E. Z. N., Campos, C. A., Fontanella, B. J. B., & Melo, D. G. (2023). Exploring spiritual/religious coping strategies among mothers of children with severe or profound intellectual disability during genetic counseling in Brazil. Journal of Genetic Counseling, 1. https://doi.org/10.1002/jgc4.1783

Skotko, B., Levine, S. P., & Goldstein, R. (2011). Self-perceptions from People with Down Syndrome. American Journal of Medical Genetics, Part A, 155(10), 2360–2369. https://doi.org/10.1002/ajmg.a.34235.Self-perceptions

Snyder C., et all. (1991). the Will and the Ways. Journal of Personality and Social Psychology, 60(4), 570–585.

Subu, M. A., Lubis, E., Mustikowati, T., Marianna, S., Dewi, A., Dewi, S. H., Waluyo, I., Sutandi, A., Mottershead, R., Ahmed, F. R., Dias, J. M., & Al Yateem, N. (2024). Listening to the voices of mothers in Indonesia: Qualitative content analysis of experiences in parenting children with down syndrome. Journal of Pediatric Nursing, 77(August), e8–e15. https://doi.org/10.1016/j.pedn.2024.02.028

Suza, D. E., Napitupulu, M. A., & Hariati, H. (2020). Experiences of mothers of children with down syndrome. Family Medicine and Primary Care Review, 22(4), 338–342. https://doi.org/10.5114/fmpcr.2020.100445

Truitt, M., Biesecker, B., Capone, G., Bailey, T., & Erby, L. (2012). The role of hope in adaptation to uncertainty: The experience of caregivers of children with Down syndrome. Patient Education and Counseling, 87(2), 233–238. https://doi.org/10.1016/j.pec.2011.08.015.

Wardah Tariq, Dawood Tahir, Shawana Kamran, & Tatheer Zahra. (2024). Insights into The Prenatal and Postnatal Knowledge & Critical Observations of Parents with Children who Have Down Syndrome: A Single Center Study. Proceedings, 38(2), 122–127. https://doi.org/10.47489/szmc.v38i2.507




DOI: http://dx.doi.org/10.12928/jehcp.v13i3.29800

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JOURNAL OF EDUCATIONAL, HEALTH, COMMUNITY PSYCHOLOGY
Program Pascasarjana Magister Psikologi
Universitas Ahmad Dahlan Yogyakarta
Penerbit UAD Press

ISSN Printed 2088-3129 ISSN Online 2460 8467
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