Nurses' Perceptions of Pediatric Palliative Care with Cancer In Hospitals In Bandung City

Latifa Hidayani Abas, Henny Suzana Mediani, Hana Rizmadewi Agustina

Abstract


Background: Pediatric palliative care (PPC) has seen significant progress in recent decades. Despite the improvements in care, nurses still feel anxious, fearful, and hesitant in providing PPC. More research efforts are needed to identify and explore nurses' perceptions of PPC in children with cancer.

Objective: The aim of this study was to explore nurses' perceptions of palliative care in children with cancer.

Methods: This study was a descriptive qualitative study. Participants were selected using purposive sampling. They were eleven nurses from Kenanga Room 2 of Hasan Sadikin Hospital, Bandung. Data were collected using semi-structured interviews and analyzed using thematic analysis method. The research was conducted from March to April 2023.

Results: This study identified four main themes and nineteen subthemes. The themes in this study are (1) Nurses' understanding of PPC, (2) Barriers to the implementation of PPC in children with cancer (3) Nurses' needs and expectations for PPC improvement, and (4) Roles and responsibilities of nurses in PPC.

Conclusions: This study described the clinical reality of nurses providing PPC to children with cancer in one of the hospitals in Indonesia. The findings suggested that addressing these challenges could lead to significant improvements in pediatric palliative care practices in the hospital setting.


Keywords


Cancer; Nurse; Pediatric Palliative Care; Perception

Full Text:

PDF

References


Akard, T. F., Hendricks-Ferguson, V. L., & Gilmer, M. J. (2019). Pediatric palliative care nursing. Annals of Cardiothoracic Surgery, 8(Suppl 1), S39–S48. https://doi.org/10.21037/apm.2018.06.01

Alsalamah, T. S., Alsalamah, Y. S., Aldrees, B., Alslamah, T., Yousif, S. M., & Fawaz, M. (2022). Barriers and Facilitators of Working with Dying Patients among Novice Nurses in Saudi Arabia. Healthcare (Switzerland), 10(11), 1–11. https://doi.org/10.3390/healthcare10112259

Beng, T. S., Ghee, W. K., Hui, N. Y., Yin, O. C., Kelvin, K. W. S., Yiling, S. T., Huey, T. A., Capelle, D. P., Zainuddin, S. I., Chin, L. E., & Loong, L. C. (2022). Happiness at the end of life: A qualitative study. Palliative & Supportive Care, 20(1), 69–75. https://doi.org/10.1017/S1478951521000262

Benini, F., Papadatou, D., Bernadá, M., Craig, F., De Zen, L., Downing, J., Drake, R., Friedrichsdorf, S., Garros, D., Giacomelli, L., Lacerda, A., Lazzarin, P., Marceglia, S., Marston, J., Muckaden, M. A., Papa, S., Parravicini, E., Pellegatta, F., & Wolfe, J. (2022). International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. Journal of Pain and Symptom Management, 63(5), e529–e543. https://doi.org/10.1016/j.jpainsymman.2021.12.031

Bobillo-Perez, S., Segura, S., Girona-Alarcon, M., Felipe, A., Balaguer, M., Hernandez-Platero, L., Sole-Ribalta, A., Guitart, C., Jordan, I., & Cambra, F. J. (2020). End-of-life care in a pediatric intensive care unit: The impact of the development of a palliative care unit. BMC Palliative Care, 19(1), 4–11. https://doi.org/10.1186/s12904-020-00575-4

Cai, S., Cheng, L., Wang, R., Zhou, X., & Peng, X. (2024). Correction: A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers (BMC Palliative Care, (2023), 22, 1, (190), 10.1186/s12904-023-01307-0). BMC Palliative Care, 23(1), 1–9. https://doi.org/10.1186/s12904-024-01361-2

C, N., & K, V. (2016). Challenges to Palliative Care in Pediatric Patients. Journal of Palliative Care & Medicine, 06(03). https://doi.org/10.4172/2165-7386.1000256

Cho-Hee, K., Min-Sun, K., Yi-Ji, M., Hee-Young, S., Myung-Nam, L., & Kyung-Ah, K. (2022). Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions. Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association. https://doi.org/10.1097/NJH.0000000000000908

Chong, P. H., Soo, J., Yeo, Z. Z., Ang, R. Q., & Ting, C. (2020). Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS). BMC Palliative Care, 19(1), 1–10. https://doi.org/10.1186/s12904-020-0524-4

De Clercq, E., Rost, M., Rakic, M., Ansari, M., Brazzola, P., Wangmo, T., & Elger, B. S. (2019). The conceptual understanding of pediatric palliative care: A Swiss healthcare perspective. BMC Palliative Care, 18(1), 1–12. https://doi.org/10.1186/s12904-019-0438-1

Denis-Larocque, G., Williams, K., St-Sauveur, I., Ruddy, M., & Rennick, J. (2017). Nurses’ perceptions of caring for parents of children with chronic medical complexity in the pediatric intensive care unit. Intensive & Critical Care Nursing, 43, 149–155. https://doi.org/10.1016/j.iccn.2017.01.010

Devitt, A., & Hara, M. O. (2021). Perceptions of nurses caring for children with life-limiting conditions in an acute setting in the Republic of Ireland. International Journal of Palliative Nursing, 27(6), 281–291. https://doi.org/10.12968/ijpn.2021.27.6.281

Donohue, P. K., Williams, E. P., Wright-Sexton, L., & Boss, R. D. (2018). “it’s Relentless”: Providers’ experience of pediatric chronic critical illness. Journal of Palliative Medicine, 21(7), 940–946. https://doi.org/10.1089/jpm.2017.0397

Ehibhatiomhan, R., Foreman, E., Barrott, L., Shek, J., & Nabhani-Gebara, S. (2022). ‘A life in a day’ simulation experience: perceptions of oncology nurses and pharmacy staff. BMC Nursing, 21(1), 1–10. https://doi.org/10.1186/s12912-022-01086-8

Ehrlich, B. S., Movsisyan, N., Batmunkh, T., Kumirova, E., Borisevich, M. V., Kirgizov, K., Graetz, D. E., McNeil, M. J., Yakimkova, T., Vinitsky, A., Ferrara, G., Li, C., Lu, Z., Kaye, E. C., Baker, J. N., & Agulnik, A. (2020). Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries. Cancer, 126(22), 4984–4993. https://doi.org/10.1002/cncr.33151

Eklund, R., Kreicbergs, U., Alvariza, A., & Lövgren, M. (2018). The family talk intervention in palliative care: A study protocol. BMC Palliative Care, 17(1), 1–6. https://doi.org/10.1186/s12904-018-0290-8

Fadare, J., Obimakinde, A., Olaogun, D., Afolayan, J., Olatunya, O., & Ogundipe, K. (2014). Perception of nurses about palliative care: Experience from South-West Nigeria. Annals of Medical and Health Sciences Research, 4(5), 723. https://doi.org/10.4103/2141-9248.141532

Fields, D., Fraser, L. K., Taylor, J., & Hackett, J. (2023). What does ‘good’ palliative care look like for children and young people? A qualitative study of parents’ experiences and perspectives. Palliative Medicine, 37(3), 355–371. https://doi.org/10.1177/02692163231154300

Friedrichsdorf, S. J., & Bruera, E. (2018). Delivering pediatric palliative care: From denial, palliphobia, pallilalia to palliactive. Children, 5(9), 1–13. https://doi.org/10.3390/children5090120

Georgadarellis, A. G., Chu, T. C., & Mason, K. E. (2022). Multidisciplinary Health Care Professionals’ Perceptions About Pediatric End of Life Discussions: A Cross-Sectional Survey and Needs Analysis. American Journal of Hospice and Palliative Medicine, 39(12), 1428–1435. https://doi.org/10.1177/10499091221091294

Gott, M., Frey, R., Raphael, D., O’Callaghan, A., Robinson, J., & Boyd, M. (2013). Palliative care need and management in the acute hospital setting: A census of one New Zealand Hospital. BMC Palliative Care, 12(1). https://doi.org/10.1186/1472-684X-12-15

Gu, L., Li, Z. Z., Peng, N. H., Zhou, J. F., Wei, B. R., & Chang, Y. C. (2022). Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China. American Journal of Hospice and Palliative Medicine, 39(6), 695–700. https://doi.org/10.1177/10499091211046236

Haines, E. R., Frost, A. C., Kane, H. L., & Rokoske, F. S. (2018). Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature. Cancer, 124(11), 2278–2288. https://doi.org/10.1002/cncr.31265

Hall, J., & Nayar, S. (2014). Building trust to work with children after a severe traumatic accident. Contemporary Nurse, 46(2), 161–169. https://doi.org/10.5172/conu.2014.46.2.161

Ho, K. K. H., Cheng, F. W. T., Lin, M. K. Y., Wai, S., Lee, V., & Li, C. kong. (2018). Palliative care service in patients with childhood cancer from a tertiary pediatric oncology center. Pediatric Investigation, 2(4), 209–215. https://doi.org/10.1002/ped4.12094

James, C., Xu, J., Coddington, J., & Lalani, N. (2022). Testing a Pediatric Palliative Care Education Workplace Intervention. Journal of Hospice and Palliative Nursing : JHPN : The Official Journal of the Hospice and Palliative Nurses Association, 24(4), E166–E171. https://doi.org/10.1097/NJH.0000000000000873

Kang, K.-A., Yu, S., Kim, C. H., Lee, M.-N., Kim, S., Kwon, S.-H., Kim, S., Kim, H. S., Park, M.-H., & Choi, S. E. (2022). Nurses’ Perceived Needs and Barriers Regarding Pediatric Palliative Care: A Mixed-Methods Study. The Korean Journal of Hospice and Palliative Care, 25(2), 85–97. https://doi.org/10.14475/jhpc.2022.25.2.85

Kilcullen, M., & Ireland, S. (2017). Palliative care in the neonatal unit: Neonatal nursing staff perceptions of facilitators and barriers in a regional tertiary nursery. BMC Palliative Care, 16(1), 1–13. https://doi.org/10.1186/s12904-017-0202-3

Kokorelias, K. M., Gignac, M. A. M., Naglie, G., & Cameron, J. I. (2019). Towards a universal model of family centered care: A scoping review. BMC Health Services Research, 19(1), 1–11. https://doi.org/10.1186/s12913-019-4394-5

Margaretha, S. E. P. M., Mulatsih, S., Effendy, C., & Kusnanto, H. (2021). Qualitative Analysis of Family-centered Care for Children with Cancer in Palliative Wards: An Evaluation of Needs and Barriers in Resource-limited Settings. Open Access Macedonian Journal of Medical Sciences, 9(G), 1–7. https://doi.org/10.3889/oamjms.2021.6202

Marston, J., Boucher, S., & Downing, J. (2018). International Children’s Palliative Care Network: A Global Action Network for Children With Life-Limiting Conditions. Journal of Pain and Symptom Management, 55(2), S104–S111. https://doi.org/10.1016/j.jpainsymman.2017.03.024

McNeil, M. J., Ehrlich, B., Wang, H., Bustamante, M., Dussel, V., Friedrich, P., Garcia Quintero, X., Gillipelli, S. R., Gómez García, W., Graetz, D., Kaye, E. C., Metzger, M., Sabato Danon, C. V., Devidas, M., Baker, J. N., & Agulnik, A. (2023). Ideal vs Actual Timing of Palliative Care Integration for Children With Cancer in Latin America. JAMA Network Open, 6(1), e2251496. https://doi.org/10.1001/jamanetworkopen.2022.51496

Peng, N. H., Lee, C. H., Lee, M. C., Huang, L. C., Chang, Y. C., & DeSwarte-Wallace, J. (2017). Effectiveness of Pediatric Palliative Care Education on Pediatric Clinicians. Western Journal of Nursing Research, 39(12), 1624–1638. https://doi.org/10.1177/0193945916680615

Porter, A. S., Zalud, K., Applegarth, J., Woods, C., Gattas, M., Rutt, E., Williams, K., Baker, J. N., & Kaye, E. C. (2021). Community Hospice Nurses’ Perspectives on Needs, Preferences, and Challenges Related to Caring for Children with Serious Illness. JAMA Network Open, 4(10), 1–12.

Rico-Mena, P., Güeita-Rodríguez, J., Martino-Alba, R., Chocarro-Gonzalez, L., Sanz-Esteban, I., & Palacios-Ceña, D. (2023). Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study. BMC Palliative Care, 22(1), 1–11. https://doi.org/10.1186/s12904-023-01194-5 https://doi.org/10.1001/jamanetworkopen.2021.27457

Rosenberg, A. R., Bona, K., Coker, T., Feudtner, C., Houston, K., Ibrahim, A., Macauley, R., Wolfe, J., & Hays, R. (2019). Pediatric Palliative Care in the Multicultural Context: Findings From a Workshop Conference. Journal of Pain and Symptom Management, 57(4), 846-855.e2. https://doi.org/10.1016/j.jpainsymman.2019.01.005

Rost, M., De Clercq, E., Rakic, M., Wangmo, T., & Elger, B. (2020). Barriers to Palliative Care in Pediatric Oncology in Switzerland: A Focus Group Study. Journal of Pediatric Oncology Nursing, 37(1), 35–45. https://doi.org/10.1177/1043454219871082

Salins, N., Hughes, S., & Preston, N. (2022). Palliative Care in Paediatric Oncology: an Update. Current Oncology Reports, 24(2), 175–186. https://doi.org/10.1007/s11912-021-01170-3

Sawin, K. J., Montgomery, K. E., Dupree, C. Y., Haase, J. E., Phillips, C. R., & Hendricks-Ferguson, V. L. (2019). Oncology Nurse Managers’ Perceptions of Palliative Care and End-of-Life Communication. Journal of Pediatric Oncology Nursing, 36(3), 178–190. https://doi.org/10.1177/1043454219835448

Sekse, R. J. T., Hunskår, I., & Ellingsen, S. (2018). The nurse’s role in palliative care: A qualitative meta-synthesis. Journal of Clinical Nursing, 27(1–2), e21–e38. https://doi.org/10.1111/jocn.13912

Sisk, B., & Baker, J. N. (2019). A model of interpersonal trust, credibility, and relationship maintenance. Pediatrics, 144(6). https://doi.org/10.1542/peds.2019-1319

Sommerbakk, R., Haugen, D. F., Tjora, A., Kaasa, S., & Hjermstad, M. J. (2016). Barriers to and facilitators for implementing quality improvements in palliative care - Results from a qualitative interview study in Norway. BMC Palliative Care, 15(1), 1–17. https://doi.org/10.1186/s12904-016-0132-5

Szabat, M. (2020). Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18. Nursing Inquiry, 27(2), 1–10. https://doi.org/10.1111/nin.12341

Szymczak, J. E., Schall, T., Hill, D. L., Walter, J. K., Parikh, S., DiDomenico, C., & Feudtner, C. (2018). Pediatric Oncology Provider Perceptions of a Pediatric Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor. Physiology & Behavior, 176(3), 139–148. https://doi.org/10.1016/j.jpainsymman.2018.01.019.Pediatric

Toqan, D., Malak, M. Z., Ayed, A., Hamaideh, S. H., & Al-amer, R. (2022). Perception of Nurses’ Knowledge about Palliative Care in West Bank/ Palestine: Levels and Influencing Factors. Journal of Palliative Care. https://doi.org/10.1177/08258597221133958

Weaver, M. S., Heinze, K. E., Bell, C. J., Wiener, L., Garee, A. M., Kelly, K. P., Casey, R. L., Watson, A., & Hinds, P. S. (2016). Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliative Medicine, 30(3), 212–223. https://doi.org/10.1177/0269216315583446

Weaver, M. S., & Wichman, C. (2018). Implementation of a competency-based, interdisciplinary pediatric palliative care curriculum using content and format preferred by pediatric residents. Children, 5(12). https://doi.org/10.3390/children5120156

WHO. (2018). Integrating palliative care and symptom relief into paediatrics. In World Health Organization (Issue December).

Yu, J., & Bang, K.-S. (2015). Pediatric Nurses’ Perception and Knowledge about Pediatric Hospice Palliative Care. The Korean Journal of Hospice and Palliative Care, 18(3), 235–244. https://doi.org/10.14475/kjhpc.2015.18.3.235




DOI: https://doi.org/10.18196/ijnp.v8i1.19333

Refbacks

  • There are currently no refbacks.


Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.


IJNP (Indonesian Journal of Nursing Practices) are indexed by:

        


Office:

School of Nursing, Faculty of Medicine and Health Science, Universitas Muhammadiyah Yogyakarta
Siti Walidah Building F3, 4th floor.
JL. Brawijaya, Tamantirto, Kasihan, Bantul, Yogyakarta 55183
Email: IJNP@umy.ac.id
Web: http://journal.umy.ac.id/index.php/ijnp

Creative Commons License
Indonesian Journal of Nursing Practice is licensed under an Attribution 4.0 International (CC BY 4.0) license.

View My Stats