Vol. 3 No. 1 (2024): at home is better
Articles

Pediatric palliative care in children and young people with non-oncological diseases: a scoping review

PDF
  • Marina Maffeo,
  • Irene Sartorio,
  • Maria Elena Fiani,
  • Biagio Nicolosi,
  • Daniele Ciofi
Marina Maffeo
Pediatric Intensive Care Unit, Meyer Children's Hospital IRCCS, Florence, Italy
Irene Sartorio
Pediatric Intensive Care Unit, Meyer Children's Hospital IRCCS, Florence, Italy
Maria Elena Fiani
Pediatric Intensive Care Unit, Meyer Children's Hospital IRCCS, Florence, Italy
Biagio Nicolosi
Wound Clinical Specialist, Complex Injury and Burn Center, Department of Health Professions, Meyer Children's Hospital IRCCS, Florence, Italy
Daniele Ciofi
Research Development Manager, Department of Health Professions, Meyer Health Campus, Florence, Italy
DOI: https://doi.org/10.36253/if-2542

Published 2024-03-31

Keywords

  • Chronic Disease,
  • Pediatric Palliative Care,
  • Barrier,
  • Eligibility,
  • Parents,
  • Pediatrics
    • ...More
    Less

Copyright (c) 2024 Marina Maffeo, Irene Sartorio, Maria Elena Fiani, Biagio Nicolosi, Daniele Ciofi

Creative Commons License

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

Abstract

Background: Pediatric palliative care (CPP) is defined as active and holistic care of the child's body, mind and spirit, actively supporting the centrality and role of the family. They have as their primary objective the improvement of the quality of life of children and their families, supporting them in treatment choices. CPPs should be planned at the time of diagnosis, in order to be able to initiate the patient and family early on to a type of care that responds to the multiple needs that the situation entails, without precluding concomitant curative therapy.  In fact, it has been shown that they are all the more effective the earlier they are integrated into the child's treatment plan. However, despite the international recognition of CPPs as an integral part of the right to health, implementation and effective access to such services remain limited in many contexts, including Italy. challenges to CPPs integration are multiple and include the complexity of clinical conditions, lack of training of healthcare professionals, regulatory and regional politicy issues, and socio-cultural barriers.
Aim: The primary aim of this scoping review is to investigate the current landscape of PPCs for children and young people with life-limiting non-oncological conditions in Italy and worldwide in terms of benefits, eligibility, impact on the family and the barriers associated with treatment.
Materials and method: A scoping review was performed between September 2023 and January 2024 following the PRISMA guidelines using the keywords “pediatric palliative care” AND “chronic disease/barrier/eligibility/parents.
Results: Ten full-text articles met the inclusion criteria. The major studies were quantitative, cross sectional. The finding demonstrates that early inclusion of complex chronic non-oncological patients in palliative care programs leads to greater patient and family satisfaction, reducing emotional burden and improving communication and treatment planning. Parents experience stress and financial difficulties. Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Major challenges include the lack of support networks and training in palliative care, along with legal and economic issues.
Conclusions: While there is growing recognition of the importance of CPP, further efforts are needed to address challenges in accessing and integrating services, as well as meeting the needs of patients, families and healthcare professionals working in this field. Improving knowledge and awareness about CPP can help overcome barriers to accessing services and improve the quality of care provided to pediatric patients and their families.

PDF

References

  1. World Health Organization. Cancer pain relief and palliative care in children.1998. Accessed September 2, 2021. https://apps.who.int/iris/handle/10665/42001
  2. Scarani R. Le cure palliative pediatriche nel mondo: Analisi della letteratura. La Rivista Italiana di Cure Palliative. 2021;23(1):69-74.
  3. Mitchell S, Morris A, Bennett K, Sajid L, Dale J. Specialist paediatric palliative care services: what are the benefits? Arch Dis Child. 2017 Oct;102(10):923-929.
  4. World Health Organization. Palliative care. 2020. https://www.who.int/news-room/fact-sheets/detail/palliative-care
  5. Alleva E, Benini F, De Santi A, Geraci A. and Orzalesi M. Cure palliative pediatriche in Italia: stato dell’arte e criticità. Epidemiologia e Sanità Pubblica, 2017; 17(6): 1–39.
  6. O'Shea ER, Bennett Kanarek R. Understanding pediatric palliative care: what it is and what it should be. J Pediatr Oncol Nurs. 2013 Jan-Feb;30(1):34-44.
  7. National Summary of Hospice Care - Peer Reports 2009. www.nhpco.org/nds
  8. Bergsträsser E. Pädiatrische Palliative Care: was ist bei Kindern anders als bei Erwachsenen? Paediatric Palliative Care: What is different in children compared to adults? Ther Umsch. 2018 Jul;75(2):101-104.
  9. Geithner E.M. An extra layer of support: Pediatric palliative care. Pediatric
  10. Nursing, 2023; 49(6), 269-274, 288.
  11. Rao SR, Gupta M, Salins N. The Concept of Respite in Palliative Care: Definitions and Discussions. Curr Oncol Rep. 2021 Feb 9;23(2):25.
  12. Bogetz JF, Lemmon ME. Pediatric Palliative Care for Children With Severe Neurological Impairment and Their Families. J Pain Symptom Manage. 2021 Sep;62(3):662-667.
  13. Boyden JY, Hill DL, Nye RT, Bona K, Johnston EE, Hinds P, Friebert S, Kang TI, Hays R, Hall M, Wolfe J, Feudtner C; PPCRN SHARE Project Group. Pediatric Palliative Care Parents' Distress, Financial Difficulty, and Child Symptoms. J Pain Symptom Manage. 2022 Feb;63(2):271-282.
  14. Antonazzo M, De Pascalis S. Le cure palliative pediatriche: ‘L’isola che non c’è’. Uno studio multicentrico. Italian Journal of Nursing, 2019; 22(31), 27–30
  15. Arias-Casais N, Garralda E, Pons JJ, Marston J, Chambers L, Downing J, Ling J, Rhee JY, de Lima L, Centeno C. Mapping Pediatric Palliative Care Development in the WHO-European Region: Children Living in Low-to-Middle-Income Countries Are Less Likely to Access It. J Pain Symptom Manage. 2020 Oct;60(4):746-753.
  16. Jankovic M, De Zen L, Pellegatta F, Lazzarin P, Bertolotti M, Manfredini L, Aprea A, Memo L, Del Vecchio A, Agostiniani R, Benini F. A consensus conference report on defining the eligibility criteria for pediatric palliative care in Italy. Ital J Pediatr. 2019 Jul 22;45(1):89.
  17. Italia. Legge 15 marzo 2010, n. 38. Disposizioni per garantire l’accesso alle cure palliative e alla terapia del dolore. Gazzetta Ufficiale n. 65, 19 marzo 2010. Available from: www.parlamento.it/parlam/leggi/10038l.htm.
  18. Spitella E., Biagioli V., Tiozzo E., Mustari M., Gawronski O., Salata M. and Dall’Oglio I. Cure palliative pediatriche nei bambini e giovani affetti da patologie non oncologiche: una revisione narrativa. L’infermiere, 2021; 58(6), e117–e129.
  19. Neuburg L. Early Initiation of Pediatric Palliative Care. J Pediatr Health Care. 2021 Jan-Feb;35(1):114-119.
  20. Benini F, Orzalesi M, de Santi A, Congedi S, Lazzarin P, Pellegatta F, De Zen L, Spizzichino M, Alleva E. Barriers to the development of pediatric palliative care in Italy. Ann Ist Super Sanita. 2016 Oct-Dec;52(4):558-564.
  21. Benini F. Conferenza di consenso - le cure palliative pediatriche: dalla diagnosi di inguaribilità al lutto 29/04/2016.
  22. Benini F, Bellentani M, Reali L, Lazzarin P, De Zen L, Pellegatta F, Aprile PL, Scaccabarozzi G. An estimation of the number of children requiring pediatric palliative care in Italy. Ital J Pediatr. 2021 Jan 7;47(1):4.
  23. Friedrichsdorf SJ, Bruera E. Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive. Children (Basel). 2018 Aug 31;5(9):120.
  24. Pellegatta F, De Zen L, Lazzarin P, Jankovic M, Bertolotti M, Manfredini L, Aprea A, Benini F. La definizione della eleggibilità alle cure palliative pediatriche Medico e Bambino 2016;35(9):573-578. https://www.medicoebambino.com/?id=1609_573.pdf
  25. Benini F, Manfredini L, Lefebvre D’Ovidio S, Spizzichino M. Progetto bambino: Cure palliative rivolte al bambino con malattia inguaribile. La Rivista Italiana di Cure Palliative, 2011; 13(4), 27–33.
  26. Harrop E, Edwards C. How and when to refer a child for specialist paediatric palliative care. Arch Dis Child Educ Pract Ed. 2013 Dec;98(6):202-8.
  27. Benini F., Ferrante A. and Facchin P. Le cure palliative rivolte ai bambini, 2007, Volume. 14, N. 5, Pag. 213-217.
  28. Benini F, Cauzzo C, Congedi S, Da Dalt L, Cogo P, Biscaglia L, Giacomelli L. Training in pediatric palliative care in Italy: still much to do. Ann Ist Super Sanita. 2019; 55:240–5 https://doi.org/10.4415/ANN_19_03_07.
  29. Arksey, H.; O’Malley, L. Scoping Studies: Towards a Methodological Framework. Int. J. Soc. Res. Methodol. 2005, 8, 19–32.
  30. Tricco, A.C.; Lillie, E.; Zarin, W.; O’Brien, K.K.; Colquhoun, H.; Levac, D.; Moher, D.; Peters, M.D.; Horsley, T.; Weeks, L.; et al. PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation. Ann. Intern. Med. 2018, 169, 467–473.
  31. Polit DF, Beck tc. Fondamenti di Ricerca Infermieristica. 2° Edition. Milan: Mc-Graw-Hill;2014.