Development of a Pediatric Palliative Care Model based on the Perspectives of Iranian Medical Personnel

Document Type : Original Article

Authors

1 Neonatal Nurse, Children’s Medical Center, Tehran University of Medical Sciences, Tehran, Iran

2 Nursing Care Research Center, Department of Psychiatric Nursing, Iran University of Medical Sciences, Tehran, Iran

3 Department of Pediatrics, School of Medicine, Urmia University of Medical Sciences, Urmia, Iran

4 Community and Preventive Medicine specialist, Community Based Participatory Research Center, Iranian Institute for Reduction of High-Risk Behaviors, Tehran University of Medical Sciences, Tehran, Iran

Abstract

Background and Objective: The pediatric palliative care (PPC) includes active care of the child's body, soul, and mind, as well as family support. The purpose of this study was to develop a model for providing pediatric palliative care based on the point of views of the Irania nurses and the physicians in Iran.
Materials and Methods: The objective of this descriptive analytic study was to develop a model for PPC and to confirm each of the factors presented in the model. Factor analysis was performed using Keizer-Meier (KMO) and Bartlett (BT) tests. A researcher-made questionnaire was used to measure the necessity of providing PPC services. This questionnaire contained 28 questions in three areas or factors (9 items about the children, 12 items related to the family issues, and 7 items related to national health), and the statistical analysis was done by using SPSS 21.
Results: The item "Attention to moral concepts in dealing with the family at the family level" had the highest mean score (4.4±0.28). The items "Trying to have a peaceful death in the end stages of life in the child's area" and "Benefiting from equal palliative services at the national level", respectively with average scores of 4.2±0.52 and 4.1±0.4 in the ranks, at the second and third of this necessity. The PPC model was developed based on the results of this questionnaire.
Conclusion: According to the result of the questionnaire items used in this study, the palliative care necessity model was developed. It is also concluded that providing PPC in Iran is necessary.

Keywords

Main Subjects

References

  1. Rusalen F, Cavicchiolo ME, Lago P, Salvadori S, Benini F. Perinatal palliative care: a dedicated care pathway. BMJ Support Palliative Care 2021;11(3):329-334.
  2. Buchholtz S, Fangmann L, Siedentopf N, Bührer C, Garten L. Perinatal Palliative Care: Additional Costs of an Interprofessional Service and Outcome of Pregnancies in a Cohort of 115 Referrals. Journal of Palliative Medicine 2023;26(3):393-401.
  3. DiFiglia S, Dhingra L, Georgiopoulos AM, Papia K, Sullivan E, Plachta A, Boccio C, Portenoy R, Basile M. Addressing Symptom Burden and Palliative Care Needs in Cystic Fibrosis: A Narrative Review of the Literature. Life (Basel) 2023;13(8):1620.
  4. World Health Organization. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health-care planners, implementers and managers. 2018. Lago P, Cavicchiolo ME, Rusalen F, Benini F. Summary of the Key Concepts on How to Develop a Perinatal Palliative Care Program. Front Pediatric 2020; 8:596744.
  5. World Health Organization. Palliative care for noncommunicable diseases: a global snapshot. World Health Organization 2019.
  6. Hui D, Bruera E. Models of Palliative Care Delivery for Patients with Cancer. Journal of Clinical Oncology 2020;38(9):852-865.
  7. Tai‐Seale M, Yang Y, Dillon E, Tapper S, Lai S, Yu P, et al. Community‐based palliative care and advance care planning documentation: Evidence from a multispecialty group. Journal of American Geriatrics Society 2018;66(2):327-332.
  8. Hua M, Ma X, Morrison RS, Li G, Wunsch H. Implementation of Hospital-Based Palliative Care Services and Use of Intensive Care During Terminal Hospitalizations. Journal of Critical Care Medicine 2020;3(1):1918675.
  9. World Health Organization. Planning and implementing palliative care services: a guide for programme managers. 2016. https://iris.who.int/bitstream/handle/10665/250584/9789241565417-eng.pdf?sequence=1. (accessed Nov 21, 2023).
  10. World Health Assembly. Strengthening of Palliative Care as a Component of Integrated Treatment within the Continuum of Care. 134th Session; EB134.R7; World Health Organization: Geneva, Switzerland, 2014. https://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf. (accessed Nov 21, 2023).
  11. Ebadinejad Z, Fakhr-Movahedi A. Palliative care strategies of Iranian nurses for children dying from cancer: a qualitative study. Eastern Mediterranean Health Journal 2022;27(8):577-583.
  12. Rostamli S, Dezvaree N, Kohnavard M, Sayarifard A, Kadivar M, Mardani –Hamooleh M, et al. Needs Assessment of Pediatric Palliative Care from the Viewpoint of Pediatricians and Pediatric Nurses in Iran. Iranian Journal of Cancer Care 2021; 2(2) :35-44.
  13. Rhee JY, Luyirika E, Namisango E, Powell RA, Garralda E, Pons JJ, et al. APCA Atlas of Palliative Care in Africa. Houston: AHPC Press; 2017. https://www.iccp-portal.org/system/files/resources/APCA_atlas.pdf. (accessed Nov 21, 2023).
  14. Burt J. Back to basics: researching equity in palliative care. Palliative Medicine 2012; 26(1):5-6.
  15. Mo H. Cancer Care Development Network: 2020.
  16. Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric palliative care in oncology. Journal of Clinical Oncology 2020;38(9):954.
  17. Dalvand H, Rassafiani M, Bagheri H. Family Centered Approach: A literature review. Modern Rehabilitation 2014;1;8(1):1-9.
  18. Lammi BM, Law M. The effects of family-centered functional therapy on the occupational performance of children with cerebral palsy. Canadian Journal of Occupational Therapy 2003;70(5):285-97.
  19. Richards CA, Starks H, O’Connor MR, Doorenbos AZ. Elements of family-centered care in the pediatric intensive care unit: an integrative review JHPN: The Official Journal of the Hospice and Palliative Nurses Association 2017;19(3):238.
  20. Smith W. Concept analysis of family-centered care of hospitalized pediatric patients. Journal of Pediatric Nursing. 2018;1(42):57-64.
  21. Gilmer MJ. Pediatric palliative care. Critical Care Nursing Clinics 2002;14(2):207-14.
  22. Farokhzadian J, Forouzi MA, Sheikhbardsiri H. Mothers and nurses' perceptions of the family‐centered care barriers in pediatric departments of an educational hospital in Iran. Journal of Child and Adolescent Psychiatric Nursing 2021;34(3): 219-224.
  23. Khanali Mojen L, Rassouli M, Eshghi P, Zendedel K, Akbari Sari A, Heravi Karimooi M, Tahmasebi M, Shirin Abadi Farahani A. Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems. Asian Pacific Journal for Cancer Prevention 2018;19(5):1303-1311.
  24. Downing J, Kieffer S, Marston J, Taglieri J, Sullivan G. An evaluation of models of children’s palliative care in Sub Saharan Africa. Abstract Book. Differentiated care for diverse communities. In Proceedings of the 5th International African Palliative Care Conference, Kampala, Uganda, 16–19 August 2016.
  25. Feudtner C, Friebert S, Jewell J, Friebert S, Carter B, Feudtner C, et al. American Academy of Pediatrics. Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations. Pediatrics 2013;132(5):966-972.
  26. Broden EG, Hinds PS, Werner-Lin A, Quinn R, Asaro LA, Curley MAQ. Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation. American Journal of Critical Care 2022;31(3):230-239.
  27. Stevenson M, Achille M, Lugasi T. Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families. Journal of Palliative Medicine 2013;16(5):566-577.
  28. Sourkes B, Frankel L, Brown M, Contro N, Benitz W, Case C, et al. Food, toys, and love: pediatric palliative care. Current Problems in Pediatric and Adolescent Health Care 2005;35(9):350.
  29. Crozier F, Hancock LE. Pediatric Palliative Care: Beyond the End of Life 2012;38(4).
  30. Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D, Friebert SE. Pediatric palliative care in the community. CA: A Cancer Journal for Clinicians 2015;65(4):315-33.
  31. Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D, Friebert SE. Pediatric palliative care in the community. CA: A Cancer Journal for Clinicians 2015;65(4):315-33.
  32. Nageswaran S, Radulovic A, Anania A. Transitions to and from the acute inpatient care setting for children with life-threatening illness. Pediatric Clinics of North America 2014;61(4):761-783.
  33. Thienprayoon R, Klick JC. Pediatric Palliative Care Programs in US Hospitals 2021;148(1): e2020021634.
  34. Adistie F, Lumbantobing VB, Maryam NN. The needs of children with terminal illness: a qualitative study. Child Care in Practice 2020 2; 26(3):257-271.
  35. Di Sarno L, Gatto A, Korn D, Pansini V, Curatola A, Ferretti S, Capossela L, Graglia B, Chiaretti A. Pain management in pediatric age. An update. Acta Biomed 2023; 94(4): e202317.
  36. Verberne LM, Kars MC, Schepers SA, Schouten-Van Meeteren AYN, Grootenhuis MA, Van Delden JJM. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC Palliat Care 2018;17(1):1.
  37. Heydari H, Shahsavari H, Hazini A, Nasrabadi AN. Exploring the Barriers of Home Care Services in Iran: A Qualitative Study 2016;2016:1-10.
  38. Doorenbos A, Lindhorst T, Starks H, Aisenberg E, Hays R. Palliative Care in the Pediatric ICU: Challenges and Opportunities for Family-Centered Practice. Journal of Social Work in End-of-Life & Palliative Care 2012;8(4):297.
  39. Norton SA, Hogan LA, Holloway RG, Temkin-Greener H, Buckley MJ, Quill TE. Proactive palliative care in the medical intensive care unit: effects on length of stay for selected high-risk patients. Critical Care Medicine 2007;35(6):1530-1535.
  40. Callaway MV, Connor SR, Foley KM. World Health Organization Public Health Model: A Roadmap for Palliative Care Development. Journal of Pain and Symptom Management 2018;55(2):6-13.
Daneshvar Medicine
Volume 32, Issue 1 - Serial Number 170
March and April 2024
Pages 30-44

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