Pediatric Hospice and Palliative Care

2019 ◽  
pp. 708-726
Author(s):  
Vanessa Battista ◽  
Gwenn LaRagione
Keyword(s):  
Palliative Care ◽  
Essential Role ◽  
Healthcare Professionals ◽  
Well Being ◽  
Pediatric Palliative Care ◽  
Working Together ◽  
Hospice And Palliative Care ◽  
Family Centered ◽  
Unique Part

This chapter provides an overview of pediatric palliative care, which is a family-centered approach to multifaceted care that focuses on a child’s and family’s well-being along a physical, psychological, emotional, spiritual, and social continuum. Pediatric hospice is a necessary and unique part of comprehensive pediatric palliative care as it can be provided simultaneously with curative treatment through the provision of concurrent care. Pediatric palliative care is best delivered by an interdisciplinary team of healthcare professionals working together to effectively communicate with families, provide excellent pain and symptom management, and support children and families in making decisions that are best for them. The goal of pediatric palliative care is to relieve suffering and improve quality of life for everyone affected by the illness of the child, including siblings, parents, grandparents, other relatives, teachers, school friends, faith community, and neighbors, as well as the healthcare professionals involved in their care. Nurses who care for dying children and their families have a unique and essential role, and they need significant personal and professional support and opportunities for ongoing education, as well as for self-care and reflection. Pediatric hospice and palliative care is a rapidly developing field with many opportunities for growth and expansion.

scholarly journals Palliative care and complex chronic conditions since the perspective of healthcare professionals

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
A Doñate-Martínez ◽  
L Llop ◽  
J Garcés
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Early Identification ◽  
Chronic Conditions ◽  
Healthcare Professionals ◽  
Care Pathway ◽  
Holistic View ◽  
Complex Chronic Conditions ◽  
Symptom Intensity

Abstract Background According to the WHO, palliative care (PC) is applicable early in the course of illness together with other curative therapies. Early PC has demonstrated beneficial effects on quality of life and symptom intensity among cancer patients. However, PC is not as early integrated on the care pathway of complex chronic conditions (CCC). This abstract presents barriers and needs identified to effectively implement early PC on CCC performed under the EU-funded InAdvance project (ref.: 825750). Methods Semi-structured interviews were performed with 16 healthcare professionals (HPs) from primary care and hospital settings working with older patients with CCC in Valencia (Spain). Results Interviews reported that main needs identified to provide early PC are: (a) coordinated strategies between multi-setting HPs to an early identification of CCC patients in need of PC; (b) adequate resources to attend patients' PC needs from a holistic view, i.e. psychosocial and spiritual needs; and (c) early integration of basic PC at primary care teams. The main barriers identified were: (a) stereotypes associated to the traditional PC approach; (b) poor knowledge from HPs of the PC holistic approach; and (c) lack of specific protocols or pathways for CCC in need of PC. Conclusions Specific skills and resources are the most relevant needs to effectively provide early PC among patients with CCC. First, it is urgent to demystify the negative culture-related vision of PC that is commonly associated to sedation and last days of a person's life. Also, multidisciplinary HPs require specific training to identify and provide early PC tailored to CCC. And, it is required a strategic and multi-setting organizational approach with fluent information flow and coordinated roles. Key messages Healthcare expenditure would be considerably reduced, especially at hospital and emergency units, with an early identification of patients with CCC in need of PC. Empowering primary HPs in PC would improve the quality of care of patients with CCC.

The effectiveness of hope-fostering interventions in palliative care: A systematic review and meta-analysis

2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Meta Analysis ◽  
Symptom Burden ◽  
Well Being ◽  
Medium Effect ◽  
Spiritual Well Being ◽  
Quasi Experimental

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.

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.

scholarly journals A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial (Preprint)

2020 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Xinyi Low ◽  
...  
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Well Being ◽  
Mobile App ◽  
Pediatric Palliative Care ◽  
Writing Intervention ◽  
Open Label ◽  
Web Based ◽  
Randomized Controlled ◽  
Life Threatening

BACKGROUND A novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children. OBJECTIVE This study's aim was to provide an accessible platform, NeW-I—which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform—that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses. METHODS The NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed. RESULTS Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing. CONCLUSIONS NeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world. CLINICALTRIAL ClinicalTrials.gov NCT03684382; https://clinicaltrials.gov/ct2/show/NCT03684382 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/17561

Designing Palliative Care Facilities to Better Support Patient and Family Care: A Staff Perspective

2022 ◽  
pp. 193758672110590
Author(s):  
Rebecca McLaughlan ◽  
Kieran Richards ◽  
Ruby Lipson-Smith ◽  
Anna Collins ◽  
Jennifer Philip
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Family Care ◽  
Well Being ◽  
Care Staff ◽  
Research Attention ◽  
Lengths Of Stay ◽  
Care Facilities ◽  
Philosophy Of Palliative Care

Objective: To contribute staff perspectives on the design of palliative care facilities to better align with the philosophy of palliative care, in support of patient, family, and staff well-being. Background: The receipt of palliative care differs from other inpatient experiences owing to its distinct philosophy of care, longer lengths of stay, a greater presence of family members, and more frequent end-of-life events. While research regarding the optimal design of palliative care environments recognizes these differences, this knowledge has been slow to exert change on the guidelines and procurement processes that determine the design solutions possible within these settings. Sustained research attention is required. Methods: An online survey, comprising a series of open-ended questions, elicited the perceptions of palliative care staff regarding the relationship between the physical environment and the distinct philosophy of palliative care. Results: Responses from 89 Australian-based palliative care professionals confirmed the high value that staff place on environments that offer privacy, homeliness, safety, and access to gardens to assist the delivery of optimum care. Conclusions: Our findings illustrate that the implications of privacy and homeliness extend far beyond the patient room and that homeliness is about more than an aesthetic of comfort. This highlights a broader capacity for design to better support the philosophy of palliative care. Importantly, the data reveal a key relationship between staff well-being and the environments in which they work; environments that are unable to match the quality of care that staff aspire to deliver can engender frustration and distress.

Translation, cultural adaptation, and validation of the mindful self-care scale among Brazilian palliative care providers

2021 ◽  
pp. 1-7
Author(s):  
Ana Cláudia Mesquita Garcia ◽  
Laura Soares Rodrigues Silva ◽  
Ana Cristina Gonçalves Ferreira ◽  
Vander Monteiro da Conceição ◽  
Everson Meireles ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cultural Adaptation ◽  
Self Care ◽  
Well Being ◽  
Future Research ◽  
Care Providers ◽  
Cross Sectional ◽  
Reliability Indices ◽  
Self Compassion ◽  
Hospice And Palliative Care

Abstract Objective This study aimed to translate, culturally adapt, and validate the Mindful Self-Care Scale (MSCS, 33-item) in a Brazilian hospice and palliative care context. Method This was a cross-sectional study with a sample of 336 Brazilian hospice and palliative care providers. The European Organisation for Research and Treatment of Cancer — Quality of Life Group Translation Procedure protocol was used for the translation and the cultural adaptation process. Psychometric properties supporting the use of the MSCS were examined through confirmatory factor analysis (CFA) and correlation analysis with other instruments to assess congruence to related constructs (resilience and self-compassion). The reliability of the Brazilian-Portuguese version of the MSCS was assessed using Cronbach's α and composite reliability coefficients. Results The six-factor (33-item) model showed a good fit to the data, with satisfactory reliability indices and adequate representation of the scale's internal structure. Further validity is evidenced in the significant, positive correlations found between the MSCS, and similar well-being constructs, namely the Self-Compassion and Resilience scales. Significance of results The findings reveal that the MSCS (33-item) is a valid, reliable, and culturally appropriate instrument to examine the practice of mindful self-care by hospice and palliative care providers in Brazil. More broadly, it represents a promising instrument for future research into self-care practices and well-being among Brazilian healthcare providers.

PALLIATIVE CARE FOR CHILDREN WITH SEVERE, REFRACTORY DISEASES. ANALYTICAL REVIEW

2020 ◽  
Vol 66 (6) ◽  
pp. 11-11
Author(s):  
A.A. Ishutin ◽  
◽  
V.S. Stupak ◽  
T.A. Sokolovskaya ◽  
◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Well Being ◽  
Scientific Publications ◽  
Symptoms Of Depression ◽  
Balanced Assessment ◽  
Russian Scientific ◽  
Analytical Review ◽  
Refractory Diseases

Significance. Improving quality and availability of palliative care for children with severe refractory diseases is one of the main objectives of the federal and reginal authorities. The efforts are focused on improving quality of patients’ life, increasing satisfaction of patients (their legal representatives) and families with availability of palliative care, that relieves suffering of patients and reduces symptoms of depression. Purpose of the study. To analyze modern forms and methods of palliative care delivery to children with severe refractory diseases. Material and methods. The authors have conducted a content analysis of scientific publications on organization of palliative care delivery to children with severe refractory diseases. A total of 153 publications were analyzed, including 141 foreign publications for the period from 1998 to the second quarter of 2020. A total of 44 publications have been selected for the analytical review including 28 publications from the international Scopus database, 12 – from the Russian scientific citation index database, including 7 publications from the list of VAK journals (Higher Attestation Commission Journals), and 4 - materials of international medical organizations (WHO, WHA, AHA, European Council). Results. Children with severe refractory diseases need specialized medical, psychological and social assistance. Palliative care includes active and comprehensive support for physical, psychological, social and spiritual well-being of these children, relieving their suffering, from diagnosis to outcome, reducing symptoms of depression in their families, ensuring the best quality of life. More than 21 million children worldwide require palliative care every year, ranging from 20 to 120 per 10,000 children around the world. However, palliative care is often discussed in the late stages of the disease, not always resulting in its early initiation, only little more than half the patients in need receive palliative care, there are differences in tools for assessing care results. It is necessary to early initiate palliative care, increase volumes of its provision, increase the number of specialists and institutions involved in palliative care delivery, as well as implement a comprehensive balanced assessment of care results.

Telemedically Augmented Palliative Care

2014 ◽  
pp. 185-201
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Hospital Admissions ◽  
Intervention Group ◽  
Symptom Burden ◽  
Well Being ◽  
Control Group ◽  
User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

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