Getting a Seat at the Table: An Iterative Development Process to Improve Available Benchmark Data for Pediatric Palliative Care Programs (S778)
administrative personnel; child; conference abstract; controlled study; District of Columbia; hospital patient; human; palliative therapy; perception; phase 1 clinical trial; program development; workflow
Objectives: * Describe a longitudinal, iterative, and cross-organizational design process. * Describe pediatric palliative care program structure and process measurement. * Create additional opportunities to expand the benchmark data available for Pediatric Hospice and Palliative Care program development. Original Research Background: Pediatric palliative care (PPC) has evolved dramatically over the last ten years. In many ways PPC services have become the standard of practice, effectively changing the paradigm of program development. Unfortunately, barriers remain for programs' ability to meet the clinical demand, including limited benchmark information to inform program development. While some data is available, PPC programs perceive the data as not specific or not applicable to PPC needs. This perception has facilitated low participation and a paucity of data. Research Objectives: In 2017, three PPC program directors undertook an iterative process to address this data challenge.
Klick J; Humphrey L; Friebert S; Rogers M; Williams C
Journal of Pain and Symptom Management
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.339" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.339</a>
Development and implementation of a bereavement follow-up intervention for grieving fathers: an action research.
Humans; Male; Health Services Research; Finland; Program Development; *Bereavement; *Fathers/px [Psychology]; *Social Support; Evidence-Based Nursing
AIMS AND OBJECTIVES: The aim is to present the development and implementation of a bereavement follow-up intervention for grieving fathers. The development and implementation process and components of the intervention are presented., BACKGROUND: There is a lack of research into fathers' grief and bereavement support for them after the death of a child. Promotion of evidence-based nursing requires transparent development and implementation of nursing interventions and models to be able to repeat, evaluate their effectiveness and redevelop them., DESIGN: Phases of action research were used when developing and implementing the intervention., METHODS: Results of the baseline study of father's grief and social support, the study of current bereavement support and the literature review were combined using triangulation., RESULTS: In this action research, the development of a bereavement follow-up intervention for grieving fathers began with the planning phase that included a baseline study about fathers' grief and social support, a study of current bereavement support systems in Finnish university hospitals and a systematic review of literature on the topic area and collaboration with a panel of experts. The developed bereavement follow-up intervention included three complementary components: support package, peer supporters' contact and health care personnel's contact. Implementation of the intervention included the development of a programme to be used in nursing practice, intervention training for programme implementers and intervention implementation., CONCLUSIONS: Developing and implementing an intervention is a complex, demanding and long-term process. The planning required theoretical knowledge as well as understanding the experiences of fathers, nursing practice and collaboration with those who implemented the intervention., RELEVANCE TO CLINICAL PRACTICE: New information about the fathers' grief and bereavement follow-up support is described. The model developed is evidence-based and can be applied in nursing care where grieving fathers and families are met. Copyright © 2010 Blackwell Publishing Ltd.
Aho, Anna L; Astedt-Kurki, Paivi; Tarkka, Marja-Terttu; Kaunonen, Marja
Journal of Clinical Nursing
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/j.1365-2702.2010.03523.x" target="_blank" rel="noreferrer noopener">10.1111/j.1365-2702.2010.03523.x</a>
Development of an in-home standardized end-of-life treatment program for pediatric patients dying of brain tumors
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Young Adult; Palliative Care; Terminal Care; home care services; hospice care; Hospital Mortality; Health Personnel; Length of Stay; Pediatric Nursing; Program Development; Program Evaluation; Colorado; Patient Admission; Palliative Care; Preschool; Newborn; Brain neoplasms
PURPOSE: To evaluate an end-of-life (EOL) program related to specific outcomes (i.e., number of hospitalizations and place of death) for children with brain tumors. DESIGN AND METHODS: From 1990 to 2005, a retrospective chart review was performed related to specified outcomes for 166 children with admission for pediatric brain tumors. RESULTS: Patients who received the EOL program were hospitalized less often (n = 114; chi-square = 5.001 with df = 1, p <.05) than patients who did not receive the program. PRACTICE IMPLICATIONS: An EOL program may improve symptom management and decrease required hospital admissions for children with brain tumors.
2013-04
Arland LC; Hendricks-Ferguson VL; Pearson J; Foreman NK; Madden JR
Journal for Specialists in Pediatric Nursing
2013
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/jspn.12024" target="_blank" rel="noreferrer">10.1111/jspn.12024</a>
The Landscape of Outpatient Pediatric Palliative Care: A National Cross-Sectional Assessment
outpatient; palliative therapy; program development; advance care planning; analgesia; article; Cesarean Section; child; controlled study; demographics; funding; hospital patient; human; Palliative Care; patient referral; school child; United States; workflow
Abstract Context: Inpatient pediatric palliative care (PPC) has grown substantially over the past 20 years; however, PPC in the outpatient setting remains underdeveloped. Outpatient PPC (OPPC) offers opportunities to improve access to PPC as well as facilitate care coordination and transitions for children with serious illness. Objectives: This study aimed to characterize the national status of OPPC programmatic development and operationalization in the United States. Methods: Utilizing a national report, freestanding children's hospitals with existing PPC programs were identified to query OPPC status. An electronic survey was developed and distributed to PPC participants at each site. Survey domains included hospital and PPC program demographics; OPPC development, structure, staffing, and workflow; metrics of successful OPPC implementation; and other services/partnerships. Results: Of 48 eligible sites, 36 (75%) completed the survey. Clinic-based OPPC programs were identified at 28 (78%) sites. OPPC programs reported a median age of 9 years [range: 1-18 years] with growth peaks in 2011, 2012 and 2020. OPPC availability was significantly associated with increased hospital size [p= 0.05] and inpatient PPC billable full time equivalent staff [p= 0.01]. Top referral indications included pain management, goals of care, and advance care planning. Funding primarily came from institutional support and billing revenue. Conclusions: Although OPPC remains a young field, many inpatient PPC programs are growing into the outpatient setting. Increasingly, OPPC services have institutional support and diverse referral indications from multiple subspecialties. However, despite high demand, resources remain limited. Characterization of the current OPPC landscape is crucial to optimize future growth.
Autrey AK; James C; Mothi SS; Stafford C; Morvant A; Miller EG; Kaye EC
Journal of Pain and Symptom Management
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.006</a>
"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Clinical Practice; Ear; Oncology; Skill; Social Work Practice; 50-56-6 (oxytocin); 51-61-6 (dopamine); 62-31-7 (dopamine); 54577-94-5 (oxytocin); 60118-07-2 (endorphin); Adult; Animal Experiment; Animal Model; Anxiety; Blood Pressure; Cancer Patient; Cancer Therapy; Cerebrovascular Accident; Distress Syndrome; Dog; Dopamine; Endogenous Compound; Endorphin; Family Study; Female; Gene Expression; Happiness; Heart Rate; Hospice; Hospital Patient; Human; Human Versus Animal Comparison; Infusion; Male; Narrative; Nonhuman; Oxytocin; Pain; Palliative Therapy; Pet Therapy; Program Development; Recreation; Social Support; Storytelling; Symptom; Total Quality Management; Trust; Volunteer; Waiting Room
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the clinic to the infusion suite, to the palliative care office, and to the inpatient hospice, the presence of therapy animals provides an another layer of therapeutic intervention to assist in coping with cancer. AAI can provide cancer patients with an opportunity for emotional support, diversion, recreation, sensory integration/tactile benefit, social support, companionship, and relief of distress and symptoms including pain, depression, anxiety, and isolation. Research also suggests that the simple act of petting a dog can lower heart rate and blood pressure (Friedman, 2015), as well as increase levels of oxytocin, dopamine, and endorphins (Uyemura, 2013). Oxytocin influences happiness and trust in individuals. "Oxytocin has some powerful effects for us in the body's ability to be in a state of readiness to heal.so it predisposes us to an environment in our bodies where we can be healthier" (http://www.npr.org/sections/health-shots/2012/03/09/146583986/ pet-therapy-how-animals-and-humans-heal-each-other). In addition, the therapy animal serves as a vehicle of communication, narrative, and storytelling. Imagine a patient sitting anxiously in the waiting room. He or she strokes the therapy dog gently and is taken to another time and place without cancer. He or she reflects on his or her own dog's roles in his or her life, how he or she rescued the dog, plays with the dog, sleeps with the dog. He or she is distracted, relaxed, and utilizing his or her own story to invoke feelings of happiness, normalcy, and hope. This presentation will examine the history, function, and roles of animal-assisted therapy and activities in various settings. The benefits of AAI with cancer patients (both adults and children) as well as with oncology professionals will also be presented. AAI as a method of integrative supportive oncology therapy will be addressed. The benefits of AAI as well as barriers and limitations for these programs in oncology settings will be reviewed. We will explore AAI program development and evaluation through presentation of results from quality improvement surveys completed by program participants. Suggestions for program development, volunteer recruitment and retention, and therapy dog support will also be discussed. Case presentations of AAI in action from various oncology settings will be a highlight of this presentation.
Bach C
Journal Of Psychosocial Oncology
2016
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<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">10.1080/07347332.2016.1147913</a>
Contextual influences on school provision of health services
Female; Humans; Male; Adult; Logistic Models; Health Services Accessibility; Program Development; Program Evaluation; Outcome Assessment (Health Care); Predictive Value of Tests; Registries; adolescent; Adolescent Transitions; Health Services Needs and Demand/organization & administration; Health Education/organization & administration; School Health Services/organization & administration; Georgia
PURPOSE: To examine contextual factors that may facilitate or impede the provision of school health services. METHODS: Using a composite database derived primarily from the National Longitudinal Study of Adolescent Health, we used logistic regression to examine how selected characteristics of communities, schools, and state-level policies are related to the provision of specific health services by high schools. RESULTS: Schools whose students experienced more health risks were generally more likely to provide related services than schools whose students experienced fewer risks. State policies and requirements for health-related programs and services were associated with greater school-based provision of services. Availability of health care services within the community was associated with a reduced likelihood that schools provided similar services on-site; however, for some health services, the reverse was true. In general, more affluent communities were more likely to provide school health services than less affluent communities. Public schools were more likely to offer health services than private schools. CONCLUSIONS: Certain characteristics of communities, schools, and state-level policies are associated with the provision of school health services. These contextual factors appear to operate by creating a demand for services and by creating the opportunity for schools to provide health services.
2000
Billy JO; Grady WR; Wenzlow AT; Brener ND; Collins JL; Kann L
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s1054-139x(99)00123-8" target="_blank" rel="noreferrer">10.1016/s1054-139x(99)00123-8</a>
Raising the standard of care for imminently dying patients using quality improvement
Pilot Projects; Program Development; Program Evaluation; Critical Pathways; Non-U.S. Gov't; Human; Support; Terminal Care/standards; Total Quality Management
2002
Bookbinder M; Romer AL
Journal Of Palliative Medicine
2002
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Journal Article
Does a palliative care clinic have a role in improving end-of-life care? Results of a pilot program
Female; Humans; Male; United States; Adult; Aged; Middle Aged; Pilot Projects; Program Development; Program Evaluation; Survival Analysis; Hospitals; Proportional Hazards Models; 80 and over; Outpatient Clinics; Hospice Care/methods/trends; Hospital/organization & administration; Palliative Care/methods/organization & administration/trends; Veterans/organization & administration
OBJECTIVE: To assess the efficacy of a palliative care clinic (PCC), which provided some of the interdisciplinary services and expertise of an inpatient consult service to outpatients, in traditional clinic sessions. DESIGN: Chart review. SETTING: A large urban Veterans Administration Medical Center. PATIENTS: One hundred patients referred to clinic. INTERVENTIONS: Palliative care clinic. OUTCOME MEASURES: Patients' reported needs, Global Distress Index (GDI) subscale, hospice eligibility, and time to death. RESULTS: The most common diagnosis was cancer (n = 85). Most patients (n = 89) had at least one need for services that the team provided (median, 2; range, 0-4), the most common of which was a desire for information about prognosis (n = 84). In a Cox proportional hazards model, predictors of enrollment in hospice included white ethnicity (hazard ratio, 3.42; p < 0.001), a need for help around the home (hazard ratio, 3.26; p = 0.002), and insufficient money left at the end of the month (hazard ratio, 2.39; p = 0.014). CONCLUSIONS: The experience of the PCC described here offers a unique approach to improving end-of-life care for those outpatients who may not be well served by existing structures of care such as palliative care consult services and who have not yet enrolled in hospice.
2002
Casarett DJ; Hirschman KB; Coffey JF; Pierre L
Journal Of Palliative Medicine
2002
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Journal Article
<a href="http://doi.org/10.1089/109662102320135270" target="_blank" rel="noreferrer">10.1089/109662102320135270</a>
An integrative approach to music therapy in pediatric palliative care.
Hospices; Music Therapy; Palliative Care; Adolescent; British Columbia; Child; Child Preschool; Female; Humans; Infant; Male; Program Development; Program Evaluation; Young Adult
Clark BA; Siden H; Straatman L
Journal Of Palliative Care
2014
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/25265742" target="_blank" rel="noreferrer">25265742</a>
Moving on from paediatric to adult health care: an initial evaluation of a transition program for young people with cystic fibrosis
Cross-Sectional Studies; Female; Humans; Male; Adult; Questionnaires; Middle Aged; Age Factors; Program Development; Program Evaluation; Patient Satisfaction; Time Factors; Adolescent Health Services; Sickness Impact Profile; quality of life; adolescent; Adolescent Transitions; Chronic disease; Continuity of Patient Care/organization & administration; Cystic Fibrosis/psychology/therapy
BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study was a preliminary evaluation of a transition program for young people with cystic fibrosis. Study group and methods: A self-administered questionnaire was completed by a group of 'pre-transition' adolescents and their parents who had not moved on to adult health care and a 'post-transition' group who had moved on from the Children's Hospital at Westmead over a six year period. The questionnaire examined patient and parent concerns about adult health care, participation in steps of the transition process, satisfaction with transition and health related quality of life. Measures of disease severity (lung function tests and body mass index) were also included. RESULTS: 137 out of 220 (62%) eligible participants completed the questionnaire. In the pre-transition group, parents had more concerns compared to young people. There was no evidence of a significant difference between pre-transition and post-transition young people regarding degree of concern. Most people were satisfied with the transition program and posttransition patients and parents who completed more steps in the transition program described the overall transition process more positively. There was no evidence of a relationship between amount of participation in transition and measures of disease severity or quality of life.
2007
Craig SL; Towns S; Bibby H
International Journal Of Adolescent Medicine And Health
2007
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Journal Article
<a href="http://doi.org/10.1515/ijamh.2007.19.3.333" target="_blank" rel="noreferrer">10.1515/ijamh.2007.19.3.333</a>
The Mother Baby Comfort Care Pathway: The Development of a Rooming-In-Based Perinatal Palliative Care Program
end of life; neonatal death; neonates; palliative care; program development; rooming-in
BACKGROUND: Traditionally, the provision of comfort care and support during the dying process for infants born with life-limiting diagnoses has occurred in the neonatal intensive care unit (NICU). A major goal for the families of these infants is often the opportunity to spend as much time as possible with their infant in order to make memories and parent their infant. PURPOSE: The objective of the Mother Baby Comfort Care Pathway is to implement a program of family-centered care with logistically flexible care delivery, allowing mothers and their families to share as normal a postpartum care experience as possible with a focus on quality of life, memory making, and time spent together. METHODS: The program was developed with the nucleus of care coordination and provision on the Mother Baby Unit (postpartum unit), with involvement from the labor and delivery room, NICU, and other units as necessary to provide the postpartum mother, her dying infant, as well as possible additional siblings (in the case of multiple gestation), postpartum care while rooming-in. The program was rolled out with training workshops for postpartum nurses. FINDINGS: Nurses who took part in the workshops and the patient care program rated both highly. IMPLICATIONS FOR PRACTICE: The Mother Baby Comfort Care Pathway aims to offer a framework for providing multidisciplinary family-centered comfort care to newborns during the postpartum period in a compassionate, evidence-based, and individualized manner in order to maximize quality time together for families with a dying infant.
Czynski AJ; Souza M; Lechner BE
Advances in Neonatal Care
2021
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<a href="http://doi.org/10.1097/anc.0000000000000838" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000838</a>
Assessment of need for a children's hospice program
Child; Humans; Grief; Canada; Health Services Needs and Demand; Death; Child Health Services; Program Development; PPC Book Chapter 2011 (Kim Widger); adolescent; Preschool; hospice care
Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide periodic, facility-based respite and palliative care to children with life-threatening, progressive illness and to their families. Loss and grief support is another integral component of the program. The concept of pediatric hospice care is founded on the premise that dying children and their families can benefit from care designed to maximize present quality of life; yet, the creation of such programs must be based on demonstrated need. One vital step in the development of the Canuck Place program was assessing the need for such a program within the province. Data from both traditional quantitative and less traditional qualitative sources were used to document and put forth an argument in support of developing a children's hospice program. The final report addressed several components that are summarized in this article for the purposes of assisting others who may wish to undertake similar projects in their own communities.
1996
Davies B
Death Studies
1996
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Journal Article
<a href="http://doi.org/10.1080/07481189608252780" target="_blank" rel="noreferrer">10.1080/07481189608252780</a>
Implementation and evaluation of a quality improvement process to improve pain management in a hospice setting
Program Development; Program Evaluation; Non-U.S. Gov't; Administration; retrospective studies; Human; Support; Nursing Audit; Hospice Care/standards; Outcome and Process Assessment (Health Care)/organization &; Pain/nursing; Total Quality Management/organization & administration
The purpose of this article is to describe the implementation and evaluation of a quality improvement process to improve pain management in a hospice setting. A retrospective chart audit of 702 patient visits pre- and 536 patient visits post-implementation of quality improvement strategies measured five aspects of pain management: complaints of pain, severity of pain, changes in patient's pain medication regime required, patient and family teaching, and use of complementary therapies. Of these measures a significant change was found in the documentation of pain assessment, recognition of changes required in the medication regime, and patient and family teaching.
1998
Duggleby W; Alden C
American Journal Of Hospice & Palliative Medicine
1998
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Journal Article
Developing a process to support perinatal nurses after a critical event
Humans; Terminal Care; Attitude to Death; Neonatal Nursing; social support; Clinical Competence; Perinatal Care; Program Development; Needs Assessment; Nursing Methodology Research; Self Care; Risk Management; Family Nursing; Staff Development; Stress; Adaptation; Psychological; Models; Grief; Emergencies; Crisis Intervention
The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization identified processes to help themselves recover and to support each other. The result of this work is a written plan to facilitate the support of perinatal nurses after critical events. This article describes the development and implementation of this plan.
2014-03
Foreman S
Nursing For Women's Health
2014
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Journal Article
<a href="http://doi.org/10.1111/1751-486X.12094" target="_blank" rel="noreferrer">10.1111/1751-486X.12094</a>
The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life
Child; Female; Humans; Male; Physician-Patient Relations; Family; Adult; Questionnaires; Communication; Program Development; Washington; Personal Satisfaction; quality of life; adolescent; Preschool; Palliative Care/organization & administration; decision making; Neoplasms/therapy; Nervous System Diseases/therapy
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. DESIGN: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQL() Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. RESULTS: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. CONCLUSIONS: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction.
2006
Hays RM; Valentine J; Haynes G; Geyer JR; Villareale N; McKinstry B; Varni JW; Churchill SS
Journal Of Palliative Medicine
2006
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Journal Article
<a href="http://doi.org/10.1089/jpm.2006.9.716" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.716</a>
We Built It…They All Came…Now How to Keep from Drowning? Pediatric Palliative Care Program Development 202: Skills in Your Toolbox for Growth and Sustainability (P20)
Palliative Care; Program Development; Drowning; Near Drowning
Kang T; Lotstein D; Humphrey L; Klick J; Williams C
Journal of Pain and Symptom Management
2018
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.11.080" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.11.080</a>
Palliative care models and innovations in 4 Eastern Mediterranean Region countries: a case-based study
Palliative Care; Diffusion of Innovation; Quality Improvement; Case-Control Studies; Program Development; Program Implementation; Human; Pediatric Care; Community Service; Leaders; Mediterranean Region
Background: There is a global agreement that palliative care should be universally accessible. However, in low- and middle- income countries and conflict zones, most people lack access to it. In the Eastern Mediterranean Region (EMR), no country has achieved integration of palliative care into its health care system, and only 4 countries have better-than-isolated palliative care provision. Aims: To promote and guide palliative care improvement in the EMR, with case studies showing the successes and challenges of palliative care implementation from 4 countries in the Region. Methods: We developed a structured, succinct, case-writing format and invited palliative care leaders in the EMR to use it to describe successes and challenges in palliative care implementation in their countries. Results: Within the EMR, in addition to many challenges and needs, there are examples of successful palliative care policy development, community-based service creation, and paediatric palliative care implementation. Conclusion: The experiences of the regional palliative care leaders documented in succinct, structured case studies, can help guide regional palliative care development in the EMR and other regions. Contexte : Il existe un accord mondial sur le fait que les soins palliatifs devraient être universellement accessibles. Cependant, dans les pays à revenu faible et intermédiaire et les zones de conflit, la plupart des personnes n' y ont pas accès. Dans la Région de la Méditerranée orientale, aucun pays n'est parvenu à intégrer les soins palliatifs dans son système de soins de santé, et seuls quatre pays disposent d'une offre de soins palliatifs qui sont en voie d'intégration. Objectifs : Promouvoir et guider l'amélioration des soins palliatifs dans la Région de la Méditerranée orientale, par le biais d'études de cas montrant les succès et les défis de la mise en oeuvre des soins palliatifs dans quatre pays de la Région. Méthodes : Nous avons mis au point un modèle de rédaction de cas structuré et succinct, et nous avons invité les responsables des soins palliatifs dans la Région de la Méditerranée orientale à s'en servir pour décrire les succès et les défis de la mise en oeuvre de ces soins dans leurs pays. Résultats : Dans la Région de la Méditerranée orientale, outre les nombreux défis et besoins, il existe des exemples de réussite concernant l'élaboration de politiques en matière de soins palliatifs, la mise en place de services communautaires et la mise en oeuvre des soins palliatifs pédiatriques. Conclusion : Les expériences réalisées par les responsables régionaux des soins palliatifs, qui sont documentées dans des études de cas structurées succintes, permettent de guider la mise en place des soins palliatifs au niveau régional.
Krakauer E; Al-Shammary SA; Duraisamy B; Rassouli M; Rizkallah R; Fadhil S; Osman H
Eastern Mediterranean Health Journal
2022
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<a href="http://doi.org/10.26719/emhj.22.038" target="_blank" rel="noreferrer noopener">10.26719/emhj.22.038</a>
The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention
Human; pediatric palliative care; New York; caregiver; Female; pediatric; Action Research; Adult; Caregiver Support; Caregivers -- Psychosocial Factors; Coefficient Alpha; Criterion-Related Validity; Data Analysis Software; Descriptive Statistics; Discriminant Validity; Health Facilities; Internal Consistency; Life Purpose; Married Women; meaning-centered psychotherapy; Middle Age; Mothers; Multimethod Studies; Narratives; Paired T-Tests; Palliative Care -- Psychosocial Factors; Pediatric Care; pediatric caregiver; Personal Satisfaction; Photography; photovoice; Pilot Studies; Pretest-Posttest Design; Program Development; Program Evaluation; Program Implementation; Psychotherapy -- Methods; Questionnaires; Reliability; Research Subject Recruitment; Semi-Structured Interview; social media; Social Media; Surveys; Whites; Adaptation; Psychological
Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. Objective: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. Design: Participants completed a pre�post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. Setting/Participants: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. Results: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants (P =.022). Exit interviews conveyed satisfaction with the intervention. Conclusions: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.
Levy K; Grant P C; Depner R M; Tenzek K E; Pailler M E; Beaupin L K; Breier J M; Byrwa D J
American Journal of Hospice & Palliative Medicine
2019
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<a href="http://doi.org/10.1177/1049909118824560" target="_blank" rel="noreferrer noopener">10.1177/1049909118824560</a>
Attempting to Define Clinical Productivity Metrics among Pediatric Palliative Care Services at Academic Children's Hospitals
United States; article; child; female; human; male; palliative therapy; pediatric palliative care; clinical article; human tissue; program development; billing and coding; burnout; clinical productivity; convenience sample; leadership; productivity; sustainability; workload
Introduction: Pediatric palliative care (PPC) programs have grown in size and number at academic children's hospitals in the United States for the past 20 years. Little is known about the relationships between program workforce staffing, billing and coding practices, clinical service requirements for billing providers, and sustainability of program models for billing providers. Method(s): The authors contacted a convenience sample of 10 PPC program leaders at academic children's hospitals in the United States. Program leaders were asked to provide information about billing provider full-time equivalent (FTE) staffing, billing and coding practices, and productivity metrics for a three-month period, from January 1 to March 31, 2017. Result(s): Ten programs participated in the convenience sample survey, and seven provided information about billing and coding practices. For the seven programs that provided evaluation and management data, calculated estimate of mean work Relative Value Unit (wRVU) production per 1.0 FTE per year was 1626. Calculated estimate of consultations per 1.0 FTE per month was 15. Calculated estimate of total clinical encounters per 1.0 FTE per month was 70. Conclusion(s): The relationships between PPC billing provider productivity and clinical workload are complex and vary widely among a convenience sample of academic PPC programs. Given the high burnout rates in the field, efforts should be made to more clearly define these relationships to promote sustainability of both billing and nonbilling PPC providers.
Mahoney D P; Brook I; Fossa M; Kang T
Journal of Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0164" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0164</a>
Lessons Learned: Identifying Items Felt to Be Critical to Leading a Pediatric Palliative Care Program in the Current Era of Program Development
pediatric palliative care; program development
Background: The experience of starting and growing a pediatric palliative care program (PPCP) has changed over the last 10 years as rapid increases of patient volume have amplified challenges related to staffing, funding, standards of practice, team resilience, moral injury, and burnout. These challenges have stretched new directors' leadership skills, yet, guidance in the literature on identifying and managing these challenges is limited. Methods: A convenience sample of 15 PPCP directors who assumed their duties within the last 10 years were first asked the following open-ended question: What do you wish you had known before starting or taking over leadership of a PPCP? Responses were grouped into themes based on similarity of content. Participants then ranked these themes based on importance, and an online discussion further elucidated the top ten themes. Results: Thirteen directors responded (86.7%; 69% female). The median age of their current-state PPCP was 5.1 years (range: 0.3-9.3), and the median number of covered pediatric-specific hospital beds was 283 (range: 170-630). Their responses generated 51 distinct items, grouped into 17 themes. Themes ranked as most important included "Learn how to manage, not just lead," "Negotiate everything before you sign anything," and "Balance patient volume with scope of practice." Conclusion: These themes regarding challenges and opportunities PPCP directors encountered in the current era of program growth can be used as a guide for program development, a self-assessment tool for program directors, a needs-assessment for program leadership, and a blueprint for educational offerings for PPCP directors.
Miller E G;Weaver M S; Ragsdale L; Hills T; Humphrey L; Williams C S P; Morvant A; Pitts B; Waldman E; Lotstein D; Linebarger J; Feudtner C; Klick J C
Journal of Palliative Medicine
2020
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<a href="http://doi.org/10.1089/jpm.2020.0205" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0205</a>
Implementation of transition programs can prevent another lost generation of patients with congenital heart disease
Child; Humans; Adult; Health Services Needs and Demand; Treatment Outcome; Program Development; Longevity; Morbidity; adolescent; Adolescent Transitions; Heart Defects; Continuity of Patient Care/organization & administration; Aftercare/organization & administration; Congenital/complications/epidemiology/prevention & control; Patient Education as Topic/organization & administration
Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.
2008
Moons P; Hilderson D; Van Deyk K
European Journal Of Cardiovascular Nursing
2008
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Journal Article
<a href="http://doi.org/10.1016/j.ejcnurse.2008.10.001" target="_blank" rel="noreferrer">10.1016/j.ejcnurse.2008.10.001</a>
Parent bereavement stress and preventive intervention following the violent deaths of adolescent or young adult children
Child; Humans; Cohort Studies; Adult; Parent-Child Relations; Death; Program Development; Stress; adolescent; P.H.S.; Research Support; U.S. Gov't; bereavement; Intervention; Interventions; Violence; Psychological/prevention & control; Preventive Psychiatry
It is currently believed that effective intervention programs can reduce the negative consequences of stressful life events. The purpose of this paper is to describe a three-step process used to develop a theory-based preventive intervention for parents whose 12- to 28-year-old children had died 2 to 7 months previously by accident, homicide, or suicide. Assumptive world, family life cycle, victimization, and social support theories form the basis for "matching" parent bereavement stress with selected intervention strategies.
Murphy SA
Death Studies
1996
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/07481189608252753" target="_blank" rel="noreferrer">10.1080/07481189608252753</a>
Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback
Humans; United States; Pain Measurement; Professional-Family Relations; Cooperative Behavior; Communication; Pilot Projects; Program Development; Patient Satisfaction; Spirituality; Hospitals; Proxy; Feedback; decision making; Health Care; Quality Assurance; Health Care/organization & administration; Quality Indicators; Palliative Care/psychology/standards; Intensive Care Units/standards; Critical Care/psychology/standards; Voluntary/organization & administration/standards
OBJECTIVE: To develop a practical set of measures for routine monitoring, performance feedback, and improvement in the quality of palliative care in the intensive care unit (ICU). DESIGN: Use of an interdisciplinary iterative process to create a prototype "bundle" of indicators within previously established domains of ICU palliative care quality; operationalization of indicators as specified measures; and pilot implementation to evaluate feasibility and baseline ICU performance. SETTING: The national Transformation of the Intensive Care Unit program developed in the United States by VHA Inc. PATIENTS: Critically ill patients in ICUs for 1, > 3, and > 5 days. MEASUREMENTS AND MAIN RESULTS: Palliative care processes including identification of patient preferences and decision making surrogates, communication between clinicians and patients/families, social and spiritual support, and pain assessment and management, as documented in medical records. Application is triggered by specified lengths of ICU stay. Pilot testing in 19 ICUs (review of > 100 patients' records) documented feasibility, while revealing opportunities for quality improvement in clinician-patient/family communication and other key components of ICU palliative care. CONCLUSIONS: The new bundle of measures is a prototype for routine measurement of the quality of palliative care in the ICU. Further investigation is needed to confirm associations between measured processes and outcomes of importance to patients and families, as well as other aspects of validity.
2006
Nelson JE; Mulkerin CM; Adams LL; Pronovost PJ
Quality & Safety in Health Care
2006
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Journal Article
<a href="http://doi.org/10.1136/qshc.2005.017707" target="_blank" rel="noreferrer">10.1136/qshc.2005.017707</a>
Preparing for Good Grief: Grief and Loss in the Hospice and Palliative Context (P07)
bereavement support; child; complicated grief; conference abstract; exercise; hospice; human; learning; palliative therapy; professional practice; program development; risk factor; survivor; videorecording
Objectives: * Describe state of current science and theory related to grief and bereavement. * Discuss variations of grief and strategies to support bereaved individuals. * Identify best practices to support healthy grief in hospice and palliative care contexts. * Identify special needs of unique populations across the lifespan (e.g., children, teens), persons with intellectual disabilities, those experiencing unexpected death of a family member or close friend, or those having complicated grief. * Identify program services and opportunities that utilize current best practices and knowledge within their own agency. Grief and bereavement are universal human experiences, and inevitable outcomes for those who lose a family member or close friend. For hospice and palliative care providers, understanding the complexities of this universal yet individualized experience, and providing support to the bereaved is a critical part of our field. This practical, interactive workshop will provide an overview of current theories, best practices, and approaches to support healthy grief and manage loss in a modern society. Through a variety of learning exercises, including discussion of field experience and current research, case studies, video exercises, and reflections, this presentation will discuss the complexities within the grief experience in hospice and palliative care. Phases of bereavement care needs, including the initial diagnosis, grieving through the disease process, becoming eligible for hospice services, support through the ongoing trajectory of grief, and facilitating access to community supports, will be discussed. Implications for hospice and palliative care inter-professional practice, program planning, and community advocacy will be provided. Special circumstances that challenge bereavement will be identified, including children, teens, survivors of traumatic loss, and risk factors for Prolonged Grief Disorder (PGD). Concerns that can particularly be addressed in the palliative context to support healthy grieving, and gaps in knowledge and services will also be highlighted.
Remke S S; Shukraft A E; Supiano K P; Wladkowski S P
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.018</a>
The National Palliative Care Registry: A Decade of Supporting Growth and Sustainability of Palliative Care Programs
pediatric palliative care; growth; hospital palliative care; national guidelines; program development; staffing
Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry ("the Registry") and describe recent findings from its surveys on hospital palliative care. Description: Established in 2008, the Registry data elements align with National Consensus Project (NCP) guidelines related to palliative care program structures and operations. The Registry provides longitudinal and comparative data that palliative care programs can use to support programmatic growth. Results: As of 2018, >1000 hospitals and 120 community sites have submitted data on their palliative care programs to the Registry. Over the past decade, the percentage of hospital admissions seen by palliative care teams (penetration) has increased from 2.5% to 5.3%. Higher penetration is correlated with teaching hospital status, having a palliative care trigger, and hospital size (p < 0.05). Although overall staffing has expanded, only 42% of Registry programs include the recommended four key disciplines: physician, advanced practice or other registered nurse, social worker, and chaplain. Compliance with NCP guidelines on key structures and processes vary across adult and pediatric programs. Conclusions: The Registry allows palliative care programs to optimize core structures and processes and understand their performance relative to their peers.
Rogers M; Meier DE; Heitner R; Aldridge M; Hill Spragens L; Kelley A; Nemec SR; Morrison RS
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2019.0262" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0262</a>
Young people's satisfaction of transitional care in adolescent rheumatology in the UK
Child; Female; Humans; Male; Cohort Studies; Great Britain; Adult; Parents; Questionnaires; Program Development; Patient Satisfaction; Sickness Impact Profile; quality of life; adolescent; Arthritis; Adolescent Transitions; Chronic disease; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Juvenile Rheumatoid/psychology/rehabilitation; Self Care/methods
BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK rheumatology centres. Satisfaction with health-care delivery was measured prior to, and 12 months after, the implementation of a structured and co-ordinated programme of transitional care using self-completed questionnaires designed for this study. RESULTS: Of 359 families invited to participate, 308 (86%) adolescents with JIA and 303 (84%) parents/guardians accepted. A fifth of adolescents had persistent oligoarthritis. Median age was 14.2 (11-18) years with median disease duration of 5.7 (0-16) years. Young people and their parents rated provider characteristics more important than aspects of the physical environment or process issues. Staff honesty and knowledge were rated as the most essential aspects of best practice. Prior to implementing the programme of transitional care, parents rated service delivery for all items significantly worse than best practice. Overall satisfaction improved 12 months after entering the programme. However, while parent satisfaction improved for 70.4% of items, significant improvements were only observed for three (13.6%) items rated by adolescents. CONCLUSION: The perceived quality of health care for young people with JIA and their parents was significantly lower than what they would like. Satisfaction with many aspects of care during transition from paediatric to adult services can be improved through the implementation of a structured, co-ordinated programme of transitional care.
2007
Shaw KL; Southwood TR; McDonagh JE; British Society of Paediatric; Adolescent Rheumatology
Child: Care, Health And Development
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2006.00698.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2006.00698.x</a>
A qualitative approach to community and provider needs assessment in a telehealth project
Humans; Program Development; British Columbia; Focus Groups; Needs Assessment; Telemedicine; Non-U.S. Gov't; Research Support; Remote Consultation
OBJECTIVE: Needs assessment is a critical part of the design and implementation of telehealth projects. This study assessed the need for a telehealth link between a local community and a tertiary-care medical center. METHODS: The assessment was conducted using multiple focus groups in a remote community and at a tertiary-care pediatric and women's medical center. Participants were physicians and allied health professionals at both sites and the parents of pediatric patients. Data were analyzed for comment categories and thematic items. RESULTS: The focus groups revealed a number of important positive and negative attitudes regarding telehealth and priorities for implementation. Uncertainty and trust were two themes that emerged from all groups. The resulting design of the telehealth program incorporated these responses. CONCLUSION: Qualitative methods, including focus groups, can yield useful data on complex behavior and explore attitudes toward new and unfamiliar technology.
1998
Siden HB
Telemedicine Journal : The Official Journal Of The American Telemedicine Association
1998
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/tmj.1.1998.4.225" target="_blank" rel="noreferrer">10.1089/tmj.1.1998.4.225</a>
Palliative care: rapid redesign to support systemwide quality improvement
Humans; Leadership; Length of Stay; Program Development; Outcome Assessment (Health Care); Patient Satisfaction; Hospitals; Catholicism; Palliative Care/organization & administration; Family/psychology; Midwestern United States; Hospice Care/standards; Hospital Restructuring; Institutional Management Teams; Multi-Institutional Systems/organization & administration; Multi-Institutional Systems/standards; Palliative Care/standards; Practice Guidelines as Topic; Religious/organization & administration; Religious/standards; Total Quality Management/organization & administration
Large-scale change techniques and rapid redesign methodologies were used to improve the quality of care delivered to patients at the end of life in a large, multihospital healthcare delivery system. By bringing key stakeholders from across the system together at a symposium to formulate the vision and critical criteria for palliative care programs, as well as to develop a flexible set of design tools, each region in the system could respond to the unique needs of its own community. Hospice length of stay for the system improved by 100% in the year after the systemwide symposium.
2002
Thomas MB; Quinn C
Journal For Healthcare Quality
2002
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Journal Article
<a href="http://doi.org/10.1097/01445442-200201000-00006" target="_blank" rel="noreferrer">10.1097/01445442-200201000-00006</a>
Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input
Child; Humans; Terminal Care; Attitude to Health; Questionnaires; Professional-Family Relations; Patient-Centered Care; Qualitative Research; Nurse's Role; Pediatric Nursing; Program Development; Needs Assessment; Patient Selection; Helping Behavior; Adaptation; Psychological; PedPal Lit; decision making; Parents/psychology; Neoplasms; social support; Quality of Life/psychology; Focus Groups/methods; Focus Groups/utilization; Morale; Nursing Methodology; Oncologic Nursing
The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents' reactions and opinions about the research methods planned for a larger study. In particular, we needed their opinions about the general experience of making the decision between palliative cytotoxic chemotherapy and supportive care alone and the factors that parents regard as important when making this decision. In addition, we wished to know whether the methodology proposed for the future study was easy to understand and whether it might cause unnecessary emotional trauma. Finally, we asked their opinions regarding the appropriate target sample of parents to include in the future study. Qualitative data about these issues were collected using focus group methodology involving seven participants. The comments made during the focus group discussions were content-analyzed for common themes. The results from the focus group discussion led to particular modifications in the proposed design and interview strategies planned for the future larger study. We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area.
2006
Tomlinson D; Capra M; Gammon J; Volpe J; Barrera M; Hinds PS; Bouffet E; Geenberg ML; Baruchel S; Llewellyn-Thomas HA; Sung L
European Journal Of Oncology Nursing
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ejon.2005.11.003" target="_blank" rel="noreferrer">10.1016/j.ejon.2005.11.003</a>
The Neonatal Comfort Care Program: Origin and Growth Over 10 Years
life limiting conditions; neonatal palliative care; program development; perinatal palliative care (PPC); interdisciplinary care
The objective of perinatal palliative care is to provide holistic and comprehensive health care services to women who are anticipating the birth of a neonate diagnosed prenatally with a life-limiting condition and to continue supportive interventions for the mother and neonate after the birth. The nature of pregnancy, with two patients requiring medical care, requires clinicians from different specialties to engage with one another, the patient, and her chosen family members. Following birth, additional skill sets to treat the medical and comfort needs of the neonate, as well as the psychoemotional and medical needs of the mother, are required. An interdisciplinary team is necessary to assist families throughout the pregnancy and postnatal journey, and coordination of such care is an integral component of palliative care services. The number of palliative care programs is increasing, but little is written about the origins of such programs, their subsequent growth, and how transitions of care occur within the programs. In this publication, we will present data garnered from interdisciplinary team members of a single organization, the Neonatal Comfort Care Program at Columbia University Irving Medical Center, and how they provide care for families throughout the pregnancy and postnatal trajectory. We will address the origin and growth of the program, the development of the interdisciplinary team, and the strategies used for high-quality communication and their respective impact on care continuity. We will also provide specific recommendations from data gathered from team members, examine the role of formal and informal education, and identify barriers and future opportunities.
Wool C; Parravicini E
Frontiers in Pediatrics
2020
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<a href="http://doi.org/10.3389/fped.2020.588432" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.588432</a>