Involving parents in the health care of hospitalised children with cancer
A model of family-centred care
DOI:
https://doi.org/10.14528/snr.2025.59.4.3192Keywords:
parents, health care, familycentered care, hospitalisation, children, cancerAbstract
Introduction: Successful implementation of the concept of family-centred health care in clinical practice is a significant challenge for the multidisciplinary team treating children with cancer and their families. The aim of this study was to examine perception and team practices in the Slovenian context.
Methods: The study was conducted using a questionnaire on family-centered care in pediatric oncology (Family-Centered Care Questionnaire-Revised). The sample comprised 80 multidisciplinary team members, of whom 63 returned completed questionnaires. Data were analysed using SPSS software. Statistical analyses included descriptive and inferential procedures (Mann-Whitney U-test and Kruskal-Wallis test).
Results: The findings indicate that the multidisciplinary team treating children with cancer is largely aware of the importance of child- and family-centred care (x = 2.28, s = 0.550). However, discrepancies exist in awareness regarding the importance of caring for the entire family (x = 2.60, s = 0.670). Differences were observed in parental involvement in care, particularly between professionals with varying levels of work experience (p = 0.024), and between intensive care and oncology care teams (p < 0.001).
Discussion and conclusion: We must strive for high-quality, modern health care that addresses the needs of both the child and parents, leading to better treatment outcomes, shorter hospital stays, greater satisfaction, and reduced costs. This understanding should be integrated into the organisational structures, guideline development, procedures, and every interaction between professionals and families.
Downloads
References
Aarthun, A., Oymar, K. A., & Akerjordet, K. (2018). Parental involvement in decision making about their child's health care at the hospital. Nursing Open, 6(1), 50–58. https://onlinelibrary.wiley.com/doi/10.1002/nop2.180 PMid:30534394; PMCid:PMC6279730
Alex's Lemonade Stand Foundation. (2022). About SuperSibs. https://www.alexslemonade.org/childhood-cancer/forfamilies/supersibs
Al-Motlaq, M., & Shields, L. (2017). Family-centered care as a western-centric model in developing countries: Luxury versus necessity. Holistic Nursing Practice, 31(5), 343–347. https://doi.org/10.1097/HNP.0000000000000228 PMid:28786891
American Association of Critical-Care Nurses. (2016). Family visitation in the adult intensive care unit. Critical Care Nurse, 36(1), e15–e18. https://doi.org/10.4037/ccn2016677
Arabiat, D., Whitehead, L., Foster, M., Shields, L., & Harris, L. (2018). Parents' experiences of family centred care practices. Journal of Pediatric Nursing, 42, 39–44. https://doi.org/10.1016/j.pedn.2018.06.012 PMid:30219298
Bruce, B., Ritchie, J., Letourneau, N. L., Larocque, S., Dennis, C. H., & Elliott, M. R. (2002). A multisite study of health professionals' perceptions and practices of family-centered care. Journal of Family Nursing, 8(4), 408–429. https://doi.org/10.1177/107484002237515
Chaturvedi, R., & Ojha, S. (2014). Understanding parental stress of physically challenged: An overview. Indian Journal of Health and Wellbeing, 5(6), 770–773. http://www.iahrw.com/index.php/home/journal_detail/19#list
Coyne, I., Amory, A., Kierman, G., & Gibson, F. (2014). Children's participation in shared decision-making: Children, adolescents, parents and healthcare professionals' perspectives and experiences. European Journal of Oncology Nursing, 18(3), 273–280. https://doi.org/10.1016/j.ejon.2014.01.006 PMid:24629505
Davis, J., & Burrows, J. F. (2017). Predictors of patient satisfaction in pediatric oncology. Journal of Pediatric Oncology Nursing, 34(6), 435–438. https://doi.org/10.1177/1043454217717239 PMid:28670954
Doane, G. H., & Varcoe, C. (2015). How to nurse: Relational inquiry with individuals and families in changing health and health care contexts (1st ed.). Wolters Kluwer Health; Lippincott Williams & Wilkins.
Dokken, D., Parent, K., & Ahmann, E. (2015). Family presence and participation: Pediatrics leading the way…and still evolving. Pediatric Nursing, 41(4), 204–206. https://pubmed.ncbi.nlm.nih.gov/26470470/ PMid:26470470
Dolničar Benedik, M., Anžič, J., Bürger Lazar, M., Jazbec, J., Rožič, M., Širca Čampa, A., Poredoš, T., Benedik, E., & Benedejčič, T. (2018). Ko otrok zboli za rakom (4th ed.). Mohorjeva družba.
Feeg, V. D., Paraszczuk, A. M., Çavuşoğlu, H., Shields, L., Pars, H., & Al Mamun, A. (2016). How is family centered care perceived by healthcare providers from different countries: An international comparison study. Journal of Pediatric Nursing, 31(3), 267–276. https://doi.org/10.1016/j.pedn.2015.11.007 PMid:26712214
Foster, M., Whitehead, L., & Maybee, P. (2016). The parents', hospitalized child's, and health care providers' perceptions and experiences of family-centered care within a pediatric critical care setting: A synthesis of quantitative research. Journal of Family Nursing, 22(1), 6–73. https://doi.org/10.1177/1074840715618193 PMid:26706128
Gorenc, M., & Bürger Lazar, M. (2014). Psihološka priprava otroka in mladostnika na boleče zdravstvene posege. In A. Ljubič & M. Oštir (Eds.), Otrok, družina, bolezen in zdravstveni delavci – skrb za druge in skrb zase: zbornik predavanj (pp. 29–30). Zveza strokovnih društev medicinskih sester, babic in zdravstvenih tehnikov Slovenije.
Groleger Sršen, K., & Vidmar, G. (2015). Koncept v družino usmerjene obravnave in ocena postopkov oskrbe. Rehabilitacija, 14(1), 104–109. https://www.dlib.si/details/URN:NBN:SI:DOC-X0SB6ELV
Hriberšek, M., Eibensteiner, F., Bukowski, N., Yeung, A. W. K., Atanasov, A. G., & Schaden, E. (2024). Research areas and trends in family-centered care in the 21st century: A bibliometric review. Frontiers in Medicine, 11, Article 1401577. https://doi.org/10.3389/fmed.2024.1401577
Harris, J., Ramelet, A. S., van Dijk, M., Pokorna, P., Wielenga, J., Tume, L., Tibboel, D., & Ista, E. (2016). Clinical recommendations for pain, sedation, withdrawal and delirium assessment in critically ill infants and children. Intensive Care Medicine, 42(6), 972–986. https://doi.org/10.1007/s00134-016-4344-1 PMid:27084344; PMCid:PMC4846705
Institute for Patient- and Family-Centered Care. (2020). What are the core concepts of patient- and family-centered care. http://www.ipfcc.org/
Institute for Patient- and Family-Centered Care. (2020). Profiles of exemplar hospitals. https://www.ipfcc.org/bestpractices/profiles-of-institutional-change.html
Klašnja, S. (2020). Medicinska travma pri otrocih, obolelih za rakom, in njihovih starših [Magistrsko delo, Univerza v Ljubljani].
Kodeks etike v zdravstveni negi in oskrbi Slovenije in Kodeks etike za babice Slovenije. (2014). Zbornica zdravstvene in babiške nege Slovenije.
Loeffen, E. A. H., Mulder, R. L., Front-Gonzales, A., Leroy, P. L. J. M., Dick, B. D., Taddio, A., Ljungman, G., Jibb, L. A., Tutelman, P. R., Liossi, C., Twycross, A., Positano, K., Knops, R. R., Wijnen, M., van de Wetering, M. D., Kremer, L. C. M., Dupuis, L. L., Campbell, F., & Tissing, W. J. E. (2020). Reducing pain and distress related to needle procedures in children with cancer. European Journal of Cancer, 131, 53–67. https://doi.org/10.1016/j.ejca.2020.02.039 PMid:32302949
Lor, M., Crooks, N., & Tluczek, A. (2016). A proposed model of person-, family-, and culture-centered nursing care. Nursing Outlook, 64(4), 352–366. https://doi.org/10.1016/j.outlook.2016.02.006 PMid:27061841
Macias, M., Zornoza, C., Rodriguez, E., García, J. A., Fernández, J. A., Luque, R., & Collado, R. (2015). Impact of hospital admission care at a pediatric unit. Journal of Pediatric Nursing, 41(6), 291–293. https://pubmed.ncbi.nlm.nih.gov/26837098/ PMid:26837098
Matziou, V., Manesi, V., Vlachioti, E., Perdikaris, P., Matziou, T., Chliara, J. I., & Mpoutopoulou, B. (2018). Evaluating how paediatric nurses perceive the family-centred model of care. Holistic Nursing Practice, 31(5), 343–347. https://doi.org/10.12968/bjon.2018.27.14.810 PMid:30048181
Pevec, M. (2015). Informiranje in vključevanje staršev v zdravstveno oskrbo hospitaliziranih otrok [Magistrsko delo, Univerza v Mariboru].
Smith, J., Swallow, V., & Coyne, I. (2015). Involving parents in managing their child's long-term condition. Journal of Pediatric Nursing, 30(1), 143–159. https://doi.org/10.1016/j.pedn.2014.10.014 PMid:25458112
Smith, W. (2018). Concept analysis of family-centered care for hospitalized pediatric patients. Journal of Pediatric Nursing, 42, 57–64. https://doi.org/10.1016/j.pedn.2018.06.014 PMid:30219300
Vaismoradi, M., Jordan, S., & Kangasniemi, M. (2014). Patient participation in patient safety and nursing input. Journal of Clinical Nursing, 24(5–6), 627–639. https://doi.org/10.1111/jocn.12664
World Medical Association. (2013). Declaration of Helsinki. Journal of the American Medical Association, 310(20), 2191–2194. https://doi.org/10.1001/jama.2013.281053 PMid:24141714
Zdun-Ryzewska, A., Nadrowska, N., Blazek, M., Bialek, K., Zach, E., & Krywda-Rybska, D. (2021). Parent’s stress predictors during a child’s hospitalization. International Journal of Environmental Research and Public Health, 18(22), Article 12019. https://doi.org/10.3390/ijerph182212019 PMid:34831774; PMCid:PMC8619911
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2025 Slovenian Nursing Review

This work is licensed under a Creative Commons Attribution 4.0 International License.
As the author undersigned hereby, I transfer, assign, or otherwise convey the following authorship rights as comprised in the Copyright and Related Rights Act (CRRA) to the Slovenian Nursing Review, Ob železnici 30A, 1000 Ljubljana: the right of reproduction - the exclusive right to fix the work in a material medium or in another copy directly or indirectly, temporarily or permanently, by any means and in any digital form, in whole or in part (CRRA, Article 23); the right of distribution (CRRA, Article 24); the right of making a work available and accessible through the internet (CRRA, Article 32a); the right of transformation, especially the exclusive right to translate a pre-existing work (CRRA, Article 33). The transfer of author rights applies to the article in its entirety, including pictorial and/or graphic works and possible supplements. The transfer of rights is exclusive and unlimited in duration or territory.













