The process of building a sense of agency in parents of newborns with disabilities in neonatal pathologywards on the example of Poland and Sweden
DOI:
https://doi.org/10.15633/ssc.13203Keywords:
disability, sense of agency, newborn, family, neonatal careAbstract
This article addresses the development of parental agency in the context of a child’s hospitalization in neonatal units, with a particular focus on neonatal pathology wards. The author points out that while the environment of highly specialized medical care is associated with intense stress, a sense of helplessness, and a loss of control for parents, it can simultaneously become a space for acquiring competence and strengthening the parental role as an active participant in the care process. The aim of this publication is to provide a comparative analysis of the methods used to support the agency of parents of newborns with disabilities in Poland and Sweden, and to identify clinical practices that facilitate this process. The text outlines the theoretical foundations of the concept of agency and its significance for parents’ mental health and the quality of their collaboration with medical staff. The author identifies key factors that strengthen agency, such as partnership-based communication, opportunities for active participation in care, ensuring conditions for a constant presence with the child, and access to psychological and educational support. Regarding Poland, the article highlights the persistence of a hierarchical relationship model and unequal access to family-centered care and psychological assistance, which often depends on local resources and solutions. In the case of Sweden, a consistently family-centered model is presented, in which parents serve as the primary caregivers, and the ward infrastructure and communication practices support family autonomy. The conclusions indicate that strengthening parental agency should be an organizational goal in neonatal care, and that adapting Swedish solutions would require infrastructural changes, a transformation of organizational culture, and a systemic reinforcement of psychological support. The article also emphasizes the importance of ensuring continuity of care following hospital discharge.
References
Alfayumi-Zeadna, S., Masarwe, S., Findling, Y., Ereli, A., & O’Rourke, N. (2025). The impact of postpartum depression on infant development in the first year of life. Journal of Affective Disorders, 388, 119558. https://doi.org/10.1016/j.jad.2025.119558
Bałanda-Bałdyga, A., Pilewska-Kozak, A. B., & Kanadys, K. M. (2025). Opieka nad noworodkiem. Ujęcie interprofesjonalne. Wydawnictwo Lekarskie PZWL.
Bandura, A. (1997). Self-efficacy: The exercise of control. W. H. Freeman.
Baraldi, E., Westling Allodi, M., Löwing, K., Smedler, A.-C., Westrup, B., & Ådén, U. (2020). Stockholm preterm interaction-based intervention (SPIBI) — study protocol for an RCT of a 12-month parallel-group post-discharge program for extremely preterm infants and their parents. BMC Pediatrics, 20, 49. https://doi.org/10.1186/s12887-020-1934-4
Bishop, K. K., Woll, J., & Arango, P. (1993). Family/professional collaboration for children with special health care needs and their families. University of Vermont, Department of Social Work.
Chen, D. (2017). Znaczenie relacji w procesie wczesnej interwencji dla małych dzieci i ich rodzin. W J. Głodkowska, I. Konieczna, R. Piotrowicz, & G. Walczak (red.), Interdyscyplinarne konteksty wczesnej interwencji, wczesnego wspomagania rozwoju dziecka. Wydawnictwo Akademii Pedagogiki Specjalnej.
Fenwick, J., Barclay, L., & Schmied, V. (2001). Struggling to mother: A consequence of inhibitive nursing interactions in the neonatal nursery. The Journal of Perinatal & Neonatal Nursing, 15(2).
Folkman, S. (2013). Stress, appraisal and coping. W M. D. Gellman & J. R. Turner (red.), Encyclopedia of behavioral medicine. Springer.
Fowlie, P. W., & McHaffie, H. (2004). Supporting parents in the neonatal unit. BMJ, 329.
Góral, E. (red.). (1996). Nowa encyklopedia powszechna PWN (t. 5). Wydawnictwo Naukowe PWN.
Griffin, T. (2013). Family-centered care in the NICU. Journal of Perinatal Nursing.
Griffiths, N., Spence, K., Loughran-Fowlds, A. S., & Westrup, B. (2019). Individualised developmental care for babies and parents in the NICU: Evidencebased best practice guideline recommendations. Early Human Development, 139, 104840.
Johnson, B. H., Abraham, M. R., & Parrish, R. N. (2004). Designing the neonatal intensive care unit for optimal family involvement. Clinics in Perinatology, 31.
Kalisiewicz, D. (red.). (1999). Encyklopedia PWN (t. 3). Wydawnictwo Naukowe PWN.
Kopeć, A., Aftyka, A., Humeniuk, E., Rybojad, B., & Rozalska-Walaszek, I. (2016). Hospitalizacja dziecka w oddziale intensywnej terapii noworodka — doświadczenia rodziców. Current Problems of Psychiatry.
Kozłowska-Rup, D., Gabryel, E., & Świetliński, J. (2023). Neonatologia praktyczna dla pielęgniarek (t. 1). Wydawnictwo Lekarskie PZWL.
Kręcisz-Plis, E. (2016). Doświadczenia rodziców w sytuacji diagnozy niepełnosprawności dziecka. W Przepis na rehabilitację. Dzieci i młodzież z niepełnosprawnością. Harmonia Universalis.
Linnér, A., Thernström Blomqvist, Y., Jonsson, K., Lilliesköld, S., & Norman, M. (2024). Parental experiences of neonatal care: A nationwide study on determinants of excellence. Neonatology, 121(1), 46–55. https://doi.org/10.1159/000533900
Łuczak-Wawrzyniak, J., Czarnecka, M., Konofalska, N., Bukowska, A., & Gadzinowski, J. (2010). Holistyczna koncepcja opieki nad wcześniakiem lub (i) chorym dzieckiem — pacjentem Oddziału Intensywnej Terapii Noworodka i jego rodzicami. Perinatologia, Neonatologia i Ginekologia, 3(1).
Mackley, A., Winter, M., Guillen, U., Paul, D. A., & Locke, R. (2016). Health literacy among parents of newborn infants. Advances in Neonatal Care, 16(4).
Mendoza, K. N. D., Lewis, H. G., Garver, L., Koegst, L. J., Kong, E. V., Roberts, M. H., Shirley, J. M., Stoklosa, D. E., Tryon, C. E., White, T. M., & Day, C. L. (2025). Improving involvement of families of small babies through family education, family integration, and multidisciplinary teamwork: A quality improvement initiative. Pediatric Quality & Safety, 10(4), e828. https://doi.org/10.1097/PQ9.0000000000000828
Meyer, R. (2003). Psychopatologia. Gdańskie Wydawnictwo Psychologiczne.
Petersson, M. Å., Persson, C., Massoudi, P., Benzein, E., & Wåhlin, I. (2021). Parents’ experiences of family health conversations after having a child in need of neonatal intensive care. Scandinavian Journal of Caring Sciences, 35(4), 1269–1277. https://doi.org/10.1111/scs.12945
Pukas, A., Suda, W., Kwiatkowska-Gruca, M., Behrendt, J., & Godula-Stuglik, U. (2010). Poziom lęku u rodziców noworodków leczonych w oddziale intensywnej terapii a wsparcie ze strony rodziny i personelu medycznego. Pediatria Polska, 85(4).
Raiskila, S., Axelin, A., Toome, L., Caballero, S., & Tandberg, B. (2017). Parents’ presence and parent-infant closeness in 11 neonatal intensive care units in six European countries vary between and within the countries. Acta Paediatrica, 106(6).
Sak, P. (2023). Procedury stosowane u noworodka urodzonego przedwcześnie w oparciu o standard organizacyjny opieki okołoporodowej. W Innowacje w Pielęgniarstwie i Naukach o Zdrowiu, 8(4).
Shirazi, Z. H., Sharif, F., Rakhshan, M., Pishva, N., & Jahanpour, F. (2015). The obstacles against nurse-family communication in family-centered care in neonatal intensive care unit: A qualitative study. Journal of Caring Sciences, 4(3).
Spruill, C., & Heaton, A. (2015). The challenge of continuity of care: Evolution of a nursing care model in NICU. Newborn and Infant Nursing Reviews, 15(2).
Downloads
Published
Issue
Section
License
Copyright (c) 2025 Paulina Niemyska
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
- Authors retain the copyright and full publishing rights without restrictions, and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution 4.0 International License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
- Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
- Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access).
