REVIEW PAPER
The experience of loss in parenting a child with a disability – selected theoretical perspectives
 
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The Maria Grzegorzewska University
 
 
Submission date: 2026-10-14
 
 
Acceptance date: 2026-10-23
 
 
Publication date: 2026-10-29
 
 
Corresponding author
Michał Szwemin   

The Maria Grzegorzewska University
 
 
JoMS 2026;67(3):173-187
 
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ABSTRACT
This article aims to examine the experience of loss in parenting a child with a disability through selected theoretical perspectives and to explore their relevance to understanding family adaptation. The article is theoretical and draws on a narrative review of selected literature on the emotional experiences of parents of children with disabilities. It discusses theoretical approaches and research findings concerning the sense of loss, recurrent sorrow and adaptation. The analysis suggests that the experience of loss may concern previously held expectations about the child’s development, one’s own parenthood and the family’s future. Associated emotions may recur at different stages of the child’s life, and experiencing them does not necessarily preclude adaptation, parental engagement or satisfaction with the parent–child relationship. The perspectives discussed illuminate the complexity of these experiences but do not justify assuming that all parents of children with disabilities experience a sense of loss. The article highlights the need to recognise the individual meanings attributed to parenthood and to consider both family difficulties and resources. It emphasises the importance of flexible support available at diagnosis and throughout subsequent stages of the child’s life. Proposed directions for further research address the diversity of parental experiences, the coexistence of a sense of loss and well-being, and the role of support in adaptation.
REFERENCES (37)
1.
Aksamit, D. (2019). Kobiety-matki o macierzyństwie: Socjopedagogiczne studium narracji matek dorosłych osób z głęboką niepełnosprawnością intelektualną. Warszawa: Wydawnictwo APS.
 
2.
Aksamit, D., Wehmeyer, M. (2022). How mothers of adults with profound intellectual disabilities experience their everyday life? A qualitative retrospective study from Poland. Journal of Policy and Practice in Intellectual Disabilities, 19, 257–269, https://doi.org/10.1111/jppi.1....
 
3.
Al Anazi, S., Alhujaili, N.A., Sinqali, D. (2025). Examination of chronic sorrow among parents of children with disabilities: Cross-sectional study. JMIR Pediatrics and Parenting, 8, e65754, https://doi.org/10.2196/65754.
 
4.
Bilgin, S., Gozum, S. (2009). Reducing burnout in mothers with an intellectually disabled child: An education programme. Journal of Advanced Nursing, 65, 12, 2552–2561, https://doi.org/10.1111/j.1365....
 
5.
Boss, P. (1999). Ambiguous loss: Learning to live with unresolved grief. Cambridge: Harvard University Press.
 
6.
Boss, P. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. W.W. Norton & Company.
 
7.
Bravo-Benítez, J., Pérez-Marfil, N., Cruz-Quintana, F. (2019). Grief experiences in family caregivers of children with autism spectrum disorder. International Journal of Environmental Research and Public Health, 16(23), 4821, https://doi.org/10.3390/ijerph....
 
8.
Brown, C., Goodman, S., Kupper, L. (2014). The unplanned journey: When you learn that your child has a disability. NICHCY-parenting a child with special needs the unplanned journey, 1–10, https://www.readingrockets.org....
 
9.
Budak, I.M., Küçük, L., Civelek, H.Y. (2018). Life experiences of mothers of children with an intellectual disability: A qualitative study. Journal of Mental Health Research in Intellectual Disabilities, 11, 301–321, https://doi.org/10.1080/193158....
 
10.
Chase, B. (2022). The unexpected comfort of feeling it all: A support group for mothers of autistic adolescents using the lens of ambiguous loss. Clinical Social Work Journal, 50(4), 522–533, https://doi.org/10.1007/s10615....
 
11.
Coughlin, M.B. (2017). Chronic sorrow in parents of children with a chronic illness or disability: An integrative literature review. Journal of Pediatric Nursing, 37, 108–116, https://doi.org/10.1016/j.pedn....
 
12.
Damrosch, S.P. (1989). Self-reported adjustment, chronic sorrow, and coping of parents of children with Down syndrome. Nursing Research, 38(1), 25–30.
 
13.
Doroszuk, J. (2017). Kryzys rodziców dziecka z niepełnosprawnością w perspektywie nowych narzędzi normalizacyjnych. Interdyscyplinarne Konteksty Pedagogiki Specjalnej, 19, 51–67.
 
14.
Eakes, G.G., Burke, M.L., Hainsworth, M.A. (1998). Middle-range theory of chronic sorrow. Image: The Journal of Nursing Scholarship, 30(2), 179–184, https://doi.org/10.1111/j.1547....
 
15.
Ferguson, P.M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with a disability. Journal of Special Education, 36(3), 124–131, https://doi.org/10.1177/002246....
 
16.
Fernández-Ávalos, M.I., Pérez-Marfil, M.N., Ferrer-Cascales, R., Cruz-Quintana, F., Fernández-Alcántara, M. (2021). Feeling of grief and loss in parental caregivers of adults diagnosed with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 34(3), 712–723, https://doi.org/10.1111/jar.12....
 
17.
Godawa, G. (2016). Funkcjonowanie rodziny dziecka objętego domową opieką hospicyjną. Studium tanatopedagogiczne. Toruń: Wydawnictwo Edukacyjne Akapit.
 
18.
Harwood, K., McLean, N., Durkin, K. (2007). First-time mothers’ expectations of parenthood: what happens when optimistic expectations are not matched by later experiences? Developmental Psychology, 43, 1–12, https://doi.org/10.1037/0012-1....
 
19.
Hobdell, E.F. (1996). Chronic sorrow: A content analysis of parental differences. Journal of Pediatric Nursing, 11(4), 215–222, https://doi.org/10.1007/BF0140....
 
20.
Janusz, B., Dejko-Wańczyk, K. (2024). Zjawisko niejednoznacznej utraty: terapia pary w sytuacji choroby zagrażającej życiu. Psychoterapia, 210(3), 5–16, https://doi.org/10.12740/PT/19....
 
21.
Jeter, K., Hardin, M.P. (2024). Parenting children with Down syndrome: A systemic look at the disability experience. Australian and New Zealand Journal of Family Therapy, 45(3), 325–335, https://doi.org/10.1002/anzf.1....
 
22.
Kamińska-Reyman, J. (1995). Rodzice zagubieni w rzeczywistości. W: I. Heszen-Niejodek (red.). Doświadczenie kryzysu – szansa rozwoju czy ryzyko zaburzeń? (s. 26–41). Katowice: Wydawnictwo Uniwersytetu Śląskiego.
 
23.
Kościelska, M. (1998). Trudne macierzyństwo. Warszawa: Wydawnictwa Szkolne i Pedagogiczne.
 
24.
Kübler-Ross, E. (2007). Rozmowy o śmierci i umieraniu. Poznań: Media Rodzina.
 
25.
Lee, Y.J., Park, H.J., Lee, S.Y. (2022). Learning to live with ambiguity: Rethinking ambiguous loss for mothers of children with disabilities. SAGE Open, 12(2), https://doi.org/10.1177/215824....
 
26.
Liberska, H., Matuszewska, M. (2011). Model rodziny z dzieckiem niepełnosprawnym. W: H. Liberska (red.). Rodzina z dzieckiem niepełnosprawnym – możliwości i ograniczenia rozwoju (s. 41–66). Warszawa: Wydawnictwo Difin.
 
27.
Olshansky, S. (1962). Chronic sorrow: A response to having a mentally defective child. Social Casework, 43, 190–193, https://doi.org/10.1177/104438....
 
28.
Parish, S.L., Rose, R.A., Grinstein-Weiss, M., Richman, E.L., Andrews, M.E. (2008). Material hardship among U.S. families raising children with disabilities. Exceptional Children, 75, 72–91, https://doi.org/10.1177/001440....
 
29.
Raap, E., Weille, K.L., Dedding, C. (2024). It is up to me because I gave him this life’ How the awareness of being permanently and unconditionally responsible shapes the experience of chronic sorrow in parents of disabled children. Psychology & Health, 1–21, https://doi.org/10.1080/088704....
 
30.
Roos, S. (2002). Chronic sorrow: A living loss. Brunner–Routledge.
 
31.
Stelter, Ż. (2014). Cierpienie rodziców dzieci niepełnosprawnych intelektualnie. Poznań: Uniwersytet im. Adama Mickiewicza.
 
32.
Stelter, Ż. (2015). Poczucie sensu życia rodziców dzieci niepełnosprawnych intelektualnie. Diametros, 46, 92–110.
 
33.
Twardowski, A. (1995). Rodzina a dziecko niepełnosprawne. W: I. Obuchowska (red.). Dziecko niepełnosprawne w rodzinie (s. 18–53). Warszawa: WSiP.
 
34.
Vliegen, N. (2006). She doesn’t want to look at me. Mother–infant observation as a bridge between clinical practice and research. Infant Observation, 9, 261–268, https://doi.org/10.1080/136980....
 
35.
Wayment, H.A., Brookshire, K.A. (2018). Mothers’ reactions to their child’s ASD diagnosis: Predictors that distinguish grief from distress. Journal of Autism and Developmental Disorders, 48, 1147–1158, https://doi.org/10.1007/s10803....
 
36.
Woodgate, R.L., Ateah, C., Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative Health Research, 18(8), 1075–1083, https://doi.org/10.1177/104973....
 
37.
Young, B., Dixon-Woods, M., Findlay, M., Heney, D. (2002). Parenting in a crisis: conceptualising mothers of children with cancer. Social Science and Medicine, 55, 1835–1847, https://doi.org/10.1016/S0277-....
 
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ISSN:1734-2031
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