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Published in: BMC Palliative Care 1/2020

Open Access 01-12-2020 | Care | Research article

Advancing pediatric palliative care in a low-middle income country: an implementation study, a challenging but not impossible task

Authors: Ximena Garcia-Quintero, Luis Gabriel Parra-Lara, Angelica Claros-Hulbert, Maria Isabel Cuervo-Suarez, Wendy Gomez-Garcia, Francois Desbrandes, Natalia Arias-Casais

Published in: BMC Palliative Care | Issue 1/2020

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Abstract

Background

The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, “Taking Care of You” (TCY), in a tertiary care, university hospital in Cali, Colombia.

Methods

A program’s database was built with children between 0 to 18 years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis.

Results

Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period.

Conclusions

The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.
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Literature
2.
go back to reference Downing J, Birtar D, Chambers L, Drake R, Gelb B, Kiman R. Children’s palliative care: a global concern. Int J Palliat Nurs. 2012;18(3):109–14.CrossRefPubMed Downing J, Birtar D, Chambers L, Drake R, Gelb B, Kiman R. Children’s palliative care: a global concern. Int J Palliat Nurs. 2012;18(3):109–14.CrossRefPubMed
3.
go back to reference Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):e923–9.CrossRefPubMed Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, et al. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):e923–9.CrossRefPubMed
5.
go back to reference World Health Organization (WHO). Integrating Palliative Care and Symptom Relief into Pediatrics: A WHO guide for health planners, implementers and managers. Geneva: World Health Organization; 2018. p. 1–87. World Health Organization (WHO). Integrating Palliative Care and Symptom Relief into Pediatrics: A WHO guide for health planners, implementers and managers. Geneva: World Health Organization; 2018. p. 1–87.
8.
go back to reference Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Jiang Kwete X, et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the lancet commission report. Lancet. 2018;391(10128):1391–454.CrossRefPubMed Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Jiang Kwete X, et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the lancet commission report. Lancet. 2018;391(10128):1391–454.CrossRefPubMed
9.
go back to reference Florez SP, Tovar MB, Leon MX, Villegas K, del DP V, Granados CE. Caracterización del conocimiento en cuidado paliativo pediátrico y percepción debarreras por parte de los pediatras y residentes de pediatría. Med Paliativa. 2015;22(4):127–35.CrossRef Florez SP, Tovar MB, Leon MX, Villegas K, del DP V, Granados CE. Caracterización del conocimiento en cuidado paliativo pediátrico y percepción debarreras por parte de los pediatras y residentes de pediatría. Med Paliativa. 2015;22(4):127–35.CrossRef
11.
go back to reference Observatorio Colombiano de Cuidados Paliativos, Universidad El Bosque. Anuario del Observatorio Colombiano De Cuidados Paliativos. 1st ed. Bogotá D.C.: Editorial Universidad El Bosque; 2016. p. 1–114. Observatorio Colombiano de Cuidados Paliativos, Universidad El Bosque. Anuario del Observatorio Colombiano De Cuidados Paliativos. 1st ed. Bogotá D.C.: Editorial Universidad El Bosque; 2016. p. 1–114.
12.
go back to reference Families I of M (US) C on P and E-LC for C and T, Field MJ, Behrman RE. In: Field MJ, Behrman RE, editors. Institute of Medicine (US) Committee on Palliative and End-of-Life Care for Children and Their Families, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families: National Academies Press; 2003. [cited 2020 Mar 9]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/25057608. Families I of M (US) C on P and E-LC for C and T, Field MJ, Behrman RE. In: Field MJ, Behrman RE, editors. Institute of Medicine (US) Committee on Palliative and End-of-Life Care for Children and Their Families, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families: National Academies Press; 2003. [cited 2020 Mar 9]. Available from: https://​www.​ncbi.​nlm.​nih.​gov/​pubmed/​25057608.
15.
go back to reference Nelson RM, Botkin JR, Kodish ED, Levetown M, Truman JT, Wilfond BS. Palliative care for children. Pediatrics. 2000;106:351–7.CrossRef Nelson RM, Botkin JR, Kodish ED, Levetown M, Truman JT, Wilfond BS. Palliative care for children. Pediatrics. 2000;106:351–7.CrossRef
21.
go back to reference Ministerio de Salud y Protección Social. Ley 1733 (septiembre 8). Bogotá D.C.: Ministerio de Salud y Protección Social; 2014. p. 1–5. Ministerio de Salud y Protección Social. Ley 1733 (septiembre 8). Bogotá D.C.: Ministerio de Salud y Protección Social; 2014. p. 1–5.
25.
go back to reference Verberne L, Kars M, Schepers S, Schouten-van Meeteren A, Grootenhuis M, Delden J. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC Palliat Care. 2018;1:17. Verberne L, Kars M, Schepers S, Schouten-van Meeteren A, Grootenhuis M, Delden J. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC Palliat Care. 2018;1:17.
26.
go back to reference Poot AJ, de Waard CS, Wind AW, Caljouw MAA, Gussekloo J. A structured process description of a pragmatic implementation project: Improving integrated care for older persons in residential care homes. Inq (United States). 2017;54:46958017737906. Poot AJ, de Waard CS, Wind AW, Caljouw MAA, Gussekloo J. A structured process description of a pragmatic implementation project: Improving integrated care for older persons in residential care homes. Inq (United States). 2017;54:46958017737906.
27.
go back to reference Proctor EK, Powell BJ, McMillen JC. Implementation strategies: recommendations for specifying and reporting. Implement Sci. 2013;8(1):1–11.CrossRef Proctor EK, Powell BJ, McMillen JC. Implementation strategies: recommendations for specifying and reporting. Implement Sci. 2013;8(1):1–11.CrossRef
28.
go back to reference Arrangements D. EPOC Taxonomy – topics list; 2015. p. 1–11. Arrangements D. EPOC Taxonomy – topics list; 2015. p. 1–11.
29.
go back to reference Flottorp SA, Oxman AD, Krause J, Musila NR, Wensing M, Godycki-Cwirko M, et al. A checklist for identifying determinants of practice: A systematic review and synthesis of frameworks and taxonomies of factors that prevent or enable improvements in healthcare professional practice. Implement Sci. 2013;8(1):35.CrossRefPubMedPubMedCentral Flottorp SA, Oxman AD, Krause J, Musila NR, Wensing M, Godycki-Cwirko M, et al. A checklist for identifying determinants of practice: A systematic review and synthesis of frameworks and taxonomies of factors that prevent or enable improvements in healthcare professional practice. Implement Sci. 2013;8(1):35.CrossRefPubMedPubMedCentral
30.
go back to reference Shortell SM. Increasing value: a research agenda for addressing the managerial and organizational challenges facing health care delivery in the United States. Med Care Res Rev. 2004;61(3 SUPPL):12–30.CrossRef Shortell SM. Increasing value: a research agenda for addressing the managerial and organizational challenges facing health care delivery in the United States. Med Care Res Rev. 2004;61(3 SUPPL):12–30.CrossRef
31.
go back to reference Vadeboncoeur CM, Splinter WM, Rattray M, Johnston DL, Coulombe L. A paediatric palliative care programme in development: trends in referral and location of death. Arch Dis Child. 2010;95(9):686–9.CrossRefPubMed Vadeboncoeur CM, Splinter WM, Rattray M, Johnston DL, Coulombe L. A paediatric palliative care programme in development: trends in referral and location of death. Arch Dis Child. 2010;95(9):686–9.CrossRefPubMed
32.
go back to reference van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med. 2004;158(9):884–90.CrossRefPubMed van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW. Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med. 2004;158(9):884–90.CrossRefPubMed
33.
go back to reference Keele L, Keenan HT, Sheetz J, Bratton SL. Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics. 2013;132(1):72–8.CrossRefPubMed Keele L, Keenan HT, Sheetz J, Bratton SL. Differences in characteristics of dying children who receive and do not receive palliative care. Pediatrics. 2013;132(1):72–8.CrossRefPubMed
34.
go back to reference Hubble RA, Ward-Smith P, Christenson K, Hutto CJ, Korphage RM, Hubble CL. Implementation of a palliative care team in a pediatric hospital. J Pediatr Health Care. 2009;23(2):126–31.CrossRefPubMed Hubble RA, Ward-Smith P, Christenson K, Hutto CJ, Korphage RM, Hubble CL. Implementation of a palliative care team in a pediatric hospital. J Pediatr Health Care. 2009;23(2):126–31.CrossRefPubMed
35.
go back to reference Kiman R, Varela R. Establishing a pediatric palliative care team in an Argentinian hospital. Eur J Palliat Care. 2011;18:40–5. Kiman R, Varela R. Establishing a pediatric palliative care team in an Argentinian hospital. Eur J Palliat Care. 2011;18:40–5.
36.
go back to reference Lyons-Warren A. Update on palliative Care for Pediatric Neurology. Am J Hosp Palliat Med. 2018;36:104990911878695. Lyons-Warren A. Update on palliative Care for Pediatric Neurology. Am J Hosp Palliat Med. 2018;36:104990911878695.
38.
go back to reference Thrane SE, Maurer SH, Cohen SM, May C, Sereika SM. Pediatric palliative care: a five-year retrospective chart review study. J Palliat Med. 2017;20(10):1104–11.CrossRefPubMedPubMedCentral Thrane SE, Maurer SH, Cohen SM, May C, Sereika SM. Pediatric palliative care: a five-year retrospective chart review study. J Palliat Med. 2017;20(10):1104–11.CrossRefPubMedPubMedCentral
39.
go back to reference National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care 4 th edition Publisher: National Coalition for Hospice and Palliative Care Clinical Practice Guidelines for Quality Palliative Care, 4 th edition. 4th ed. Richmond: National Coalition for Hospice and Palliative Care; 2018. p. 1–190. [cited 2020 Mar 9]. Available from: https://www.nationalcoalitionhpc.org/ncp. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care 4 th edition Publisher: National Coalition for Hospice and Palliative Care Clinical Practice Guidelines for Quality Palliative Care, 4 th edition. 4th ed. Richmond: National Coalition for Hospice and Palliative Care; 2018. p. 1–190. [cited 2020 Mar 9]. Available from: https://​www.​nationalcoalitio​nhpc.​org/​ncp.
40.
go back to reference Cuervo-Suarez MI, Claros-Hulbert A, Manzano-Nunez R, Muñoz M, García X. Pediatric Palliative Care During End of Life: A Privilege of a Few in a Tertiary Referral Hospital From Colombia. Am J Hosp Palliat Med. 2020;37(8):636–40.CrossRef Cuervo-Suarez MI, Claros-Hulbert A, Manzano-Nunez R, Muñoz M, García X. Pediatric Palliative Care During End of Life: A Privilege of a Few in a Tertiary Referral Hospital From Colombia. Am J Hosp Palliat Med. 2020;37(8):636–40.CrossRef
41.
go back to reference Villanueva G, Murphy MS, Vickers D, Harrop E, Dworzynski K. End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance. BMJ. 2016;355:i6385.CrossRefPubMed Villanueva G, Murphy MS, Vickers D, Harrop E, Dworzynski K. End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance. BMJ. 2016;355:i6385.CrossRefPubMed
42.
go back to reference Widger K, Seow H, Rapoport A, Chalifoux M, Tanuseputro P. Children’s end-of-life health care use and cost. Pediatrics. 2017;139(4):e20162956.CrossRefPubMed Widger K, Seow H, Rapoport A, Chalifoux M, Tanuseputro P. Children’s end-of-life health care use and cost. Pediatrics. 2017;139(4):e20162956.CrossRefPubMed
43.
44.
go back to reference Donovan LA, Wakefield CE, Russell V, Cohn RJ. Hospital-based bereavement services following the death of a child: a mixed study review. Palliat Med. 2015;29(3):193–210.CrossRefPubMed Donovan LA, Wakefield CE, Russell V, Cohn RJ. Hospital-based bereavement services following the death of a child: a mixed study review. Palliat Med. 2015;29(3):193–210.CrossRefPubMed
Metadata
Title
Advancing pediatric palliative care in a low-middle income country: an implementation study, a challenging but not impossible task
Authors
Ximena Garcia-Quintero
Luis Gabriel Parra-Lara
Angelica Claros-Hulbert
Maria Isabel Cuervo-Suarez
Wendy Gomez-Garcia
Francois Desbrandes
Natalia Arias-Casais
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00674-2

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