| Literature DB >> 33158421 |
Ximena Garcia-Quintero1, Luis Gabriel Parra-Lara2,3, Angelica Claros-Hulbert4,2, Maria Isabel Cuervo-Suarez4, Wendy Gomez-Garcia5, Francois Desbrandes6, Natalia Arias-Casais7.
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.Entities:
Keywords: Implementation; Latin America; Palliative medicine; Pediatric; Pediatric palliative care; Program; Terminal care
Mesh:
Year: 2020 PMID: 33158421 PMCID: PMC7648318 DOI: 10.1186/s12904-020-00674-2
Source DB: PubMed Journal: BMC Palliat Care ISSN: 1472-684X Impact factor: 3.234
Eight-step implementation strategy
| Strategies | Objective | Setting | Deliverable |
|---|---|---|---|
| Inform healthcare providers, families, health care professionals in order to raise awareness | Hospitalization, emergency, PICU, NICU, CCU | Educational discussion meetings, conferences for caregivers, patients, and families. | |
| To establish collaborative support between board directors/decision-makers and PPC program leader | Board of directors Education committee Management committee | Reports and meetings that showed the enhancement of humanized care, improvement in patient experience and healthcare personnel experience, health outcomes, and finally resource optimization. | |
| To educate HCW in PPC and its impact in the healthcare services | All HCW from hospitalization, PICU, NICU, CCU, BMTU | Meetings Conferences Workshops Educational material | |
| To promote PPC with healthcare authorities, scientific societies, the academic community, and stakeholders | health insurance, scientific associations, patient associations, national palliative care scientific associations, territorial health entities | Boards Meetings Conferences, Diplomacy | |
| To train and educate the TCY program team in PPC | Postgraduate education: -Universidad Internacional de La Rioja Continued education: -Harvard Medical School courses | Master’s degree Palliative care education and practice course | |
| To organize a multidisciplinary team in PPC that guarantees a comprehensive and holistic approach for the patient and their family needs | FVL | Inclusion of different healthcare workers including a psychologist, social worker, nurse, and spiritual counselor | |
| To guarantee a comprehensive approach to the pediatric medical conditions in PC | FVL, Pediatrician leader, Department of Palliative Care | A physician with specific training in pediatrics and PPC | |
| To create an information system that characterizes the population and identifies clinical, economic, and social problems that may contribute to solving scientific gaps and support multilevel decision-making. | FVL | PPC research group Support of research assistant |
BMTU Bone Marrow Transplant Unit, HCW Healthcare Workers, PPC Pediatric Palliative Care, CCU Children Cancer Units, PICU Pediatric Intensive Care Unit, NICU Neonatal Intensive Care Unit, TCY “Taking Care of You”, FVL Fundacion Valle del Lili
Effective Practice and Organisation of Care (EPOC) Taxonomy “Implementation Strategies” and “Financial Arrangements” Fitting the “Taking Care of You” (TCY) Program Strategy and Objectives
| Subcategory | TCY strategy | Strategy objective |
|---|---|---|
Interventions designed to bring about changes in healthcare organizations, the behavior of healthcare professionals or the use of health services by healthcare recipients | ||
| | Local advocacy to convene capacity building | Train a specialized PPC team through graduate programs abroad |
| | Design and create written, and online evidence-based information material | Supply healthcare professionals with key objective topics and information on PPC |
| | Local, and national educational courses and workshops | Create a successful method to favor mass training and raising awareness on PPC approach and principles for healthcare professionals |
| | Coach national multidisciplinary courses and participation in postgraduate university courses | Increase national multidisciplinary knowledge on palliative philosophy |
| | Medical, psychological and social work evaluation of the patient and family to discuss as part of multidisciplinary medical board meetings | Provide a psychosocial and medical perspective of the patient and family prior to multidisciplinary decision-making meetings |
Changes in how funds are collected, insurance schemes, how services are purchased, and the use of targeted financial incentives or disincentives | ||
| | Apply for funding through a research grant | Promote and sustain pediatric palliative care in a middle-income country |
| | Held Advocacy Reunions with health care providers locally | Lower access barriers for patients and families of MIC |
| | Reunions with the board of directors and decision-makers emphasizing the added value of PPC, based on enhancing patient and family satisfaction, patient experience, health humanization, and resource optimization | Obtain institutional support to consolidate the team and decrease the access barrier |
Changes in how, when, and where healthcare is organized and delivered, and who delivers healthcare. | ||
| | Promote patient attention in the outpatient scenario through medical order | Since most of the patients are referred to the program from hospitalization, we make sure they can continue attention in the outpatient ward |
| | Coached local interdisciplinary team meetings, educational meetings among the general PC group. | Guide the conformation of the Pediatric Palliative Care team |
| | Held institutional multidisciplinary meetings with local health care providers | Contextualize life-limiting-and-threatening disease |
| | Participated in multidisciplinary board meetings with treating specialist and several homecare services | Coordinate and guarantee an integrative followup to improve patients care |
| | Coached local interdisciplinary team meetings, support for clinical improvement plans of the team and regional educational meetings | Facilitating and establishing communication and developing an improved dialogue. |
| | While in hospitalization we hold medical board meetings with interdisciplinary teams and promote continuity through outpatient setting followup | Ensuring the responsibility of care and bereavement followup |
| | Coached educational team meetings, regional meetings with health care professionals and healthcare providers | Promote adequate quality of life during the health-disease-attention process |
| | Providing phone advisory 24 h 7 days a week | Around-the-clock availability for care consultation to direction the family and bereavement care |
| | Coached educational sessions with the hospital’s pediatric departments | Educating about the importance of involving comprehensive care and patients with complex chronic diseases who are candidates for referral to the PPC team |
| | Meetings and constant communication is held with TCYteam, treating specialist and the family | Establish individualized management goals |
| | Coached local interdisciplinary team meetings, support for clinical improvement plans, and regional educational meetings | Establishing a multidisciplinary team that provides organizational status, coordinated care, and capability based on individualized relevance and effectivity |
| | Interdisciplinary meetings between treating specialist, our team and the family | Provide objective information to the family when a patient’s treatment changes from curative to palliative |
PPC Pediatric Palliative Care, MIC Middle Income Country, TCY “Taking Care of You”, MIC Middle-Income countries
Fig. 1Comparison of the number of patients assessed by the PPC program in the outpatient setting between 2017 and 2019. PPC Pediatric Palliative Care
Fig. 2Comparison of the number of Inpatients referred to the program from 2017 to 2019. PPC Pediatric Palliative Care
Pediatric Patient Referral by Departments
| Pediatric Patient Referral by Departments | ||||||||
|---|---|---|---|---|---|---|---|---|
| Department | 2017 | 2018 | 2019 | Total | ||||
| n | % | n | % | n | % | n | % | |
| General pediatric ward | 4 | 398 | 634 | 1036 | ||||
| Pediatric ICU | – | – | 192 | 266 | 458 | |||
| Pediatric Emergency room | 5 | 126 | 150 | 281 | ||||
| Neonatal ICU | 1 | 61 | 87 | 149 | ||||
| Bone Marrow Transplant | – | – | 13 | 28 | 41 | |||
| Total general | 10 | 790 | 1165 | 1965 | ||||
ICU Intensive Care Unit
Place of death and bereavement workshop attendance comparison per year
| Place of death | Total | 2017a | 2018b | 2019 |
|---|---|---|---|---|
| Emergency | 24 | 2 | 11 | 11 |
| General Pediatric ward | 215 | 39 | 83 | 93 |
| Another healthcare institution | 14 | 3 | 1 | 10 |
| Home | 35 | 13 | 16 | 6 |
| 79 | 6 | 12 | 61 |
aGeneral PC program
bStart of the PPC program
Fig. 3Integration of the EPOC categories “Implementation Strategy”, “Financial Arrangements ”, “Delivery Arrangements” in the matrix of targeted “levels of organization” and “Domains of implementation”. Note EPOC: Effective Practice and Organization of Care