Involving parents in the health care of hospitalised children with cancer

A model of family-centred care

Authors

  • Mojca Horvat University Medical Centre Maribor, Clinic for Paediatrics, Unit for Paediatric Intensive Care and Therapy, Ljubljanska Street 5, 2000 Maribor, Slovenia https://orcid.org/0009-0001-6377-6821
  • Jadranka Stričevič University of Maribor, Faculty of Health Sciences, Žitna ulica 15, 2000 Maribor, Slovenia
  • Marko Kavčič University Medical Centre Ljubljana, Paediatric Clinic, Clinical Department of Paediatric Haematology and Oncology, Bohoričeva Street 20, 1000 Ljubljana https://orcid.org/0000-0002-4949-1344
  • Petra Klanjšek University of Maribor, Faculty of Health Sciences, Žitna ulica 15, 2000 Maribor, Slovenia https://orcid.org/0000-0003-3631-6691

DOI:

https://doi.org/10.14528/snr.2025.59.4.3192

Keywords:

parents, health care, familycentered care, hospitalisation, children, cancer

Abstract

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

Download data is not yet available.

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

Published

2025-12-19

How to Cite

Horvat, M., Stričevič, J. ., Kavčič, M., & Klanjšek, P. (2025). Involving parents in the health care of hospitalised children with cancer: A model of family-centred care. Slovenian Nursing Review, 59(4), 232–240. https://doi.org/10.14528/snr.2025.59.4.3192

Issue

Section

Original scientific article

Most read articles by the same author(s)