A Mixed-Methods Quasi-Experimental Study on Perspectives Among Physicians and Nurses Regarding Use of Palliative Care Teams in the Pediatric Intensive Care Unit After Out-of-Hospital Cardiac Arrest
education and counseling; goals of care; out-of-hospital cardiac arrest; palliative care; pediatric palliative care consult; psychosocial support
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these poor outcomes, such patients could benefit from palliative care involvement. AIMS: To characterize the existing use and identify barriers to seeking palliative care consults in children admitted to the Pediatric Intensive Care Unit (PICU) with OHCA. DESIGN: Mixed-methods quasi-experimental study. PARTICIPANTS: Physicians (MD/DO), nurse practitioners, and registered nurses who provide care in the PICU. RESULT(S): Overall, nurses felt palliative care was consulted "not nearly enough" (43%), while the majority of physicians (53.9%) perceived palliative care services are requested either "just the right amount" (30.8%) or "too often" (23.1%). The top 3 desired palliative services were (1) patient and family psychosocial support, (2) assistance with determining goals of care, and (3) counseling and education. Barriers to consults were forgetting/not thinking about consulting, and family refusal of palliative care consult. No statistical differences among participant groups were found for likelihood to consult palliative care, unless the patient faced imminent death. CONCLUSION(S): Pediatric Intensive Care Unit providers desire assistance from palliative care teams for help with identifying goals of care, providing psychosocial support, as well as education to the patients and their families. Unfortunately, there remains a large discrepancy between physicians and nurses when it comes to how often palliative care is, and should, be consulted.
Broman A; Williams C; Macauley R; Carney P A
The American journal of hospice & palliative care
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/10.1177/1049909120937454" target="_blank" rel="noreferrer noopener">10.1177/1049909120937454</a>
End-of-life care in paediatrics
bereavement; child; Hospice and Palliative Nursing; Patient care -- In Infancy and Childhood; pediatric nursing -- Education; psychosocial support
The article provide information on end-of-life care in paediatrics, including the signs that death is imminent, how to manage the care of a dying child or young person and support their family, and how to care for the patient after death. Topics include caring for a child or young person at the end of their life is emotionally challenging and traumatic experiences in practice; and manage unpleasant symptoms, an advance care plan should be developed as soon as this is clinically indicated.
Rosengarten L; Carr E
British Journal of Nursing
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/10.12968/bjon.2020.29.19.1114" target="_blank" rel="noreferrer noopener">10.12968/bjon.2020.29.19.1114</a>
National Survey of Sibling Support Services in Children's Hospitals
Child; life; Palliative care; Pediatric; Psychosocial support; Serious illness; Siblings; article; child; comfort; distress; syndrome; education; human; palliative; therapy; psychosocial; care; quality of life; sibling; teaching; United States
Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support services for siblings are critical to promote positive outcomes and decrease negative consequences and align with parents' desires to support all of their children. These include services offered to the sibling or family to provide comfort or enhance the quality of life during a child's serious illness. Despite national standards, sibling support services are often difficult for families to access. The aim of this study was to describe sibling support activities provided through teaching children's hospitals across the United States using a cross-sectional, descriptive design. Results indicate most hospitals surveyed offer sibling support services that focus on sibling education about the illness; parent education on how to anticipate the siblings needs; and activities for families to do together, yet face barriers to delivery. Services focused directly on siblings and actively supporting their adaptation were least often provided and less than half reported screening siblings for psychosocial distress. Findings suggest that sibling support services may be an important resource to minimize distress and promote adaptation for siblings. This description of current and available sibling support services is an important starting point for enhancing services, policies, and institutions that fully envelope siblings into patient- and family-centered care. Copyright © 2022 Informa UK Limited, trading as Taylor & Francis Group.
Mooney-Doyle K; Franklin QM; Burley SR; Root MC; Akard TF
Progress in Palliative Care.
2022
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/10.1080/09699260.2022.2094173">10.1080/09699260.2022.2094173</a>
Palliative Care in Pediatric Pulmonology
palliative care; quality of life; bronchopulmonary dysplasia; communication; pulmonary hypertension; cystic fibrosis; psychosocial support; neuromuscular disease; lung transplant; pediatric pulmonology; primary palliation
Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with cystic fibrosis, bronchopulmonary dysplasia, neuromuscular disease, pulmonary hypertension, and lung transplantation from Texas Children's Hospital. We discuss the expected clinical course of each condition, then review the integration of primary and specialized palliative care into the management of each diagnosis. This paper then reviews the management of two children with end staged lung disease at Hospital Civil de Guadalajara, providing an additional perspective for approaching palliative care in low-income countries.
Baumann T; Das S; Jarrell JA; Nakashima-Paniagua Y; Benitez EA; Gazzaneo MC; Villafranco N
Children
2021
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/10.3390/children8090802" target="_blank" rel="noreferrer noopener">10.3390/children8090802</a>
Parent-Reported Caregiving Roles of Siblings of Children with Inborn Errors of Metabolism
caregiving; disabilities; inherited metabolic disorders; psychosocial support; siblings
ABSTRACT: Objectives: Research examining sibling caregiving contributions to medically complex pediatric patients, including those with inborn errors of metabolism (IEMs), is limited. We assess caregiving roles and attributes of siblings and hypothesize that there will be differences in parent-reported contributions among siblings of children with IEMs and siblings of typically developing (TD) children. Study design: A convergent parallel mixed-methods study design guided analysis of data from parental surveys and semistructured interviews. Interviews were conducted with parents (n = 49) of children with IEMs and parents (n = 28) of exclusively TD children. We used inductive thematic analysis to identify themes related to sibling caregiving. The caregiving and support roles for siblings (n = 55) of children with IEMs and siblings (n = 42) of TD children were coded to assess each sibling's caregiving contributions and personal attributes. Results: Logistic regressions, using generalized estimating equations, were fitted. Results showed that siblings of children with IEMs were significantly more likely to provide monitoring (odds ratio [OR]: 3.62, confidence interval [CI]: 1.30–10.07) and emotional/social support (OR: 4.02, CI: 1.67–9.67) than siblings of TD children. Themes arising from interviews with parents of children with IEMs focused on sibling attributes, parental expectations regarding sibling caregiving, and challenges to the sibling-sibling and parent-sibling relationships. Themes revealed nuances in the sibling caregiving experience. Conclusion: Siblings of children with IEMs make meaningful caregiving contributions and may provide care differently than siblings of TD children. Understanding childhood caregiving roles may inform how health care providers and parents encourage sibling caregiving contributions into adulthood.
Granovetter MA; Sumrall S; Lea D; Gelles S; Koehly LM
Journal of Developmental and Behavioral Pediatrics
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/10.1097/DBP.0000000000001168" target="_blank" rel="noreferrer noopener">10.1097/DBP.0000000000001168</a>