Pediatric Palliative Care Instruction for Residents

2011 ◽  
Vol 29 (5) ◽  
pp. 375-378 ◽  
Author(s):  
Brian S. Carter ◽  
Rebecca Swan
Keyword(s):  
Palliative Care ◽  
Health Care Professionals ◽  
Positive Impact ◽  
Cultural Humility ◽  
Pediatric Palliative Care ◽  
Relational Communication ◽  
Bereaved Parents ◽  
Centered Care ◽  
Training Event ◽  
Family Centered

A 1-day training event for pediatric residents with interdisciplinary staff was held, which was modeled after the Initiative for Pediatric Palliative Care (IPPC). Training included relational communication, cultural humility, pain–symptom management, family-centered care, team problem solving, and strategic planning using didactic, small group, and plenary platforms. Two bereaved parents were co-learners and trainers. Twenty-six interdisciplinary staff participated. A positive impact was measured in new knowledge gained, value in collaborative learning with health care professionals and families, and ability to work with professionals outside participants' own unit. Confidence to advocate for improved pediatric palliative care was also noted. The IPPC curriculum is easily adapted for resident education. Incorporating family members as co-learners and teachers is valuable. Advocacy for pediatric palliative care may follow this type of experience.

Recommendations from bereaved parents for family-centered pediatric palliative care

2008 ◽  
Author(s):  
Rebecca J. Selove ◽  
Janie P. Brooks ◽  
Kristin D. Caminiti ◽  
Deborah L. Dokken
Keyword(s):  
Palliative Care ◽  
Pediatric Palliative Care ◽  
Bereaved Parents ◽  
Family Centered

scholarly journals Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis—A multicenter prospective study

2020 ◽  
pp. 026921632097562
Author(s):  
Sophie Pelke ◽  
Julia Wager ◽  
Benedikt B. Claus ◽  
Boris Zernikow ◽  
Mandira Reuther
Keyword(s):  
Palliative Care ◽  
Factor Analysis ◽  
Prospective Study ◽  
Outcome Measure ◽  
Neurological Impairment ◽  
Pediatric Palliative Care ◽  
Confirmatory Factor ◽  
Multicenter Prospective Study ◽  
Family Centered ◽  
Severe Neurological Impairment

Background: Comprehensive outcome measurement in pediatric palliative care focusing on the entire unit of care, that is, the affected child and its family, is crucial to depict treatment effects. Despite its increasing relevance, no appropriate multidimensional outcome measures exist for the largest patient group in this field, namely children with severe neurological impairments. Aim: The aim of this study was to develop and validate a family-centered multidimensional outcome measure for pediatric palliative care patients with severe neurological impairment that encompasses the entire unit of care. Design: Based on results of a qualitative study, the questionnaire was developed by consensus-based generation of questions. It was validated in a multicenter prospective study employing exploratory and confirmatory factor analyses as well as reliability and item analyses. Setting: A total of 11 pediatric palliative care teams across Germany aided in the recruitment of study participants. Questionnaires were answered by 149 parents of children with severe neurological impairment and 157 professional caregivers. Results: The exploratory factor analysis of parent data revealed a 6-factor structure of the questionnaire representing: symptoms, the child’s social participation, normalcy, social support, coping with the disease and caregiver’s competencies. This structure was verified by a confirmatory factor analysis of professional caregiver data. Five separate items regarding siblings, partners, and further symptoms not applicable for all patients were added to ensure full multidimensionality. Conclusion: A validated outcome tool for severely neurologically impaired pediatric palliative care patients, the FACETS-OF-PPC, now exists. Due to its concise length and appropriate psychometric properties, it is well suited for clinical application.

Bereaved Parents' Perspectives on Pediatric Palliative Care

2012 ◽  
Vol 8 (4) ◽  
pp. 316-338 ◽  
Author(s):  
Rhonda Robert ◽  
Donna S. Zhukovsky ◽  
Riza Mauricio ◽  
Katherine Gilmore ◽  
Shirley Morrison ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Palliative Care ◽  
Bereaved Parents

scholarly journals P038: Does the pediatric emergency department have a role in pediatric palliative care?

CJEM ◽  
2017 ◽  
Vol 19 (S1) ◽  
pp. S90-S91
Author(s):  
A. Côté ◽  
N. Gaucher ◽  
A. Payot
Keyword(s):  
Emergency Medicine ◽  
Palliative Care ◽  
Continuity Of Care ◽  
Health Care Professionals ◽  
Moral Distress ◽  
Healthcare Providers ◽  
Clinical Situation ◽  
Pediatric Emergency ◽  
Pediatric Palliative Care ◽  
Pediatric Emergency Medicine

Introduction: Very little is known regarding the emergency department’s (ED) role in the care of paediatric patients with complex chronic and life-limiting illnesses. In fact, the provision of paediatric palliative care (PPC) in the paediatric ED has, of yet, never been explored. This study aims to explore pediatric emergency medicine healthcare professionals’ perspectives regarding their role in PPC and to compare these to other health care professionals’ understandings of the ED’s role in PPC. Methods: Interdisciplinary semi-structured focus groups were held with healthcare providers from pediatric emergency medicine, pediatric palliative care, pediatric complex care and pediatric intensive care. Exploratory open-ended questions introduced naturally occurring discussions and interactions. Data was transcribed in full and analysed using NVivo© software. Data analysis was performed by thematic analysis and theoretical sampling. Results: From January to October 2016, 58 participants were interviewed; most were female nurses and physicians. ED providers seek to maintain continuity of care and uphold pre-established wishes throughout PPC patients’ ED visits by listening and supporting the patient and family, evaluating the clinical situation, communicating with primary care teams and organising rapid admissions to wards. Some ED providers recognized having no choice to provide palliative care approach under certain circumstances despite thinking it might not be part of their culture and role. Each interdisciplinary team demonstrated particular values and cultures, influencing their understandings of the ED’s role in PPC; continuity of care is complicated by these distinct philosophies. Limitations to providing PPC in the ED are related to unsuitable physical environments, lack of uninterrupted time, efficiency expectations, unknown patients, provider lack of knowledge and moral distress. Solutions were directed at improving communication between teams and humanizing care to develop a sensibility to quality PPC in the ED. Conclusion: Although the perspective of pediatric ED’s role in caring for PPC patients is heterogeneous, several barriers to providing high quality emergency PPC can be overcome. Future studies will explore the experiences of PPC families presenting to the ED.

scholarly journals The Learners' Perceptions Survey—Primary Care: Assessing Resident Perceptions of Internal Medicine Continuity Clinics and Patient-Centered Care

2013 ◽  
Vol 5 (4) ◽  
pp. 587-593 ◽  
Author(s):  
John M. Byrne ◽  
Barbara K. Chang ◽  
Stuart C. Gilman ◽  
Sheri A. Keitz ◽  
Catherine P. Kaminetzky ◽  
...  
Keyword(s):  
Internal Medicine ◽  
Primary Care ◽  
Health Care Professionals ◽  
Clinical Training ◽  
Patient Centered Care ◽  
Family Centered Care ◽  
Patient Centered ◽  
Centered Care ◽  
The University ◽  
Family Centered

Abstract Background In 2010, the Department of Veterans Affairs (VA) implemented a national patient-centered care initiative that organized primary care into interdisciplinary teams of health care professionals to provide patient-centered, continuous, and coordinated care. Objective We assessed the discriminate validity of the Learners' Perceptions Survey—Primary Care (LPS-PC), a tool designed to measure residents' perceptions about their primary and patient-centered care experiences. Methods Between October 2010 and June 2011, the LPS-PC was administered to Loma Linda University Medical Center internal medicine residents assigned to continuity clinics at the VA Loma Linda Healthcare System (VALLHCS), a university setting, or the county hospital. Adjusted differences in satisfaction ratings across settings and over domains (patient- and family-centered care, faculty and preceptors, learning, clinical, work and physical environments, and personal experience) were computed using a generalized linear model. Results Our response rate was 86% (77 of 90). Residents were more satisfied with patient- and family-centered care at the VALLHCS than at either the university or county (P < .001). However, faculty and preceptors (odds ratio [OR]  =  1.53), physical (OR  =  1.29), and learning (OR  =  1.28) environments had more impact on overall resident satisfaction than patient- and family-centered care (OR  =  1.08). Conclusions The LPS-PC demonstrated discriminate validity to assess residents' perceptions of their patient-centered clinical training experience across outpatient primary care settings at an internal medicine residency program. The largest difference in scores was the patient- and family-centered care domain, in which residents rated the VALLHCS much higher than the university or county sites.

Supporting Siblings & Their Families During Intensive Baby Care

2008 ◽  
Vol 27 (1) ◽  
pp. 64-64
Author(s):  
Linda Rector
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Hospital Setting ◽  
Family Centered Care ◽  
Journal Articles ◽  
Centered Care ◽  
Big Picture ◽  
Neonatal Problems ◽  
Family Centered

Most health care professionals who work with neonates in the hospital setting acknowledge the benefits of family-centered care. Textbooks and journal articles that focus on neonatal problems usually include a section on the importance of supporting parents through this stressful time. Strategies for including siblings in the NICU are found in a sidebar or in a few short paragraphs, as afterthoughts in the big picture of family-centered care.

Involving Family and Friends in Palliative Care for Persons With Kidney Disease

2020 ◽  
pp. 108-115
Author(s):  
Elizabeth Anderson ◽  
David M. White
Keyword(s):  
Palliative Care ◽  
Kidney Disease ◽  
End Of Life ◽  
Family Caregivers ◽  
Great Promise ◽  
Cultural Norms ◽  
Centered Care ◽  
Family Beliefs ◽  
Family Centered

Family-centered palliative care for patients with kidney disease shows great promise in alleviating the suffering of patients with collateral benefits to family members. Engaging family caregivers is particularly valuable for those with kidney disease, given often multiple comorbidities, impact of dialysis on quality of life, and often conflicting end-of-life decisions. Family caregivers are at high risk for burnout, increasing the likelihood that patients themselves will not receive end-of-life care or support. Important components of family-centered palliative care include assessment, emotional support, education, assertive communication skills, referrals, and grief and bereavement support. It is crucial that the care team recognize the role of cultural norms, family beliefs, and communication patterns, tailoring family-centered care to meet the needs of each individual patient.

Supporting families in palliative care

2015 ◽  
pp. 500-514 ◽  
Author(s):  
Rose Steele ◽  
Betty Davies
Keyword(s):  
Palliative Care ◽  
Family System ◽  
Terminally Ill ◽  
Nursing Interventions ◽  
Family Experience ◽  
The Family ◽  
Centered Care ◽  
The Individual ◽  
Levels Of Functioning ◽  
Family Centered

Family-centered care is a basic tenet of palliative care philosophy, which recognizes that terminally ill patients exist within the family system. The patient’s illness affects the whole family, and, in turn, the family’s responses affect the patient. Supporting families in palliative care means that nurses must plan their care with an understanding not only of the individual patient’s needs but also of the family system within which the patient functions. Families with a member who requires palliative care are in a “transition of fading away,” characterized by seven dimensions that help nurses to understand families’ experiences and to support them. Level of family functioning also plays a role in family experience and serves to guide nursing interventions for families with varying levels of functioning.

Respect in Critical Care

2007 ◽  
Vol 18 (2) ◽  
pp. 149-156
Author(s):  
Cynda Hylton Rushton
Keyword(s):  
Healthcare Professionals ◽  
Ethical Principle ◽  
Moral Conflict ◽  
Cultural Humility ◽  
Bearing Witness ◽  
Whole Person ◽  
Healthcare Environments ◽  
Centered Care ◽  
Interdisciplinary Healthcare ◽  
Family Centered

Demonstrating respect is the hallmark of excellence in caring for critically ill patients and their families. Understanding the meaning of respect and the strategies that foster it are foundational for nurses as interdisciplinary healthcare professionals. Basically, respect is the act of esteeming another. Demonstrated by word and deed, it is fostered by attending to the whole person by involving the patient and family in decision making, providing family-centered care, bearing witness, and adopting a broader perspective marked by cultural humility. By creating processes that ensure everyone’s views are heard, healthcare professionals as well as patients and their families are supported. One key process, known as the “Council Process,” shifts dialogue from telling to discovering, from judging to inquiring; it neutralizes conjecture, fosters the acceptance of moral conflict, and protects the integrity of healthcare professionals and their organizations. Acknowledging respect as a foundational ethical principle is the first step toward relationally rich healthcare environments for patients, families, and professionals.

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