Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions
BACKGROUND: Adolescents living with incurable cancer require ongoing support to process grief, emotions, and information as disease progresses including treatment options (phase 1 clinical trials and/or hospice/palliative care). Little is known about how adolescents become ready for such discussions. OBJECTIVE: The purpose of this study was to explore the process of adolescent readiness for end-of-life preparedness discussions, generating a theoretical understanding for guiding clinical conversations when curative options are limited. METHODS: We explored 2 in-depth cases across time using case-study methodology. An a priori conceptual model based on current end-of-life research guided data collection and analysis. Multiple sources including in-depth adolescent interviews generated data collection on model constructs. Analysis followed a logical sequence establishing a chain of evidence linking raw data to study conclusions. Synthesis and data triangulation across cases and time led to theoretical generalizations. Initially, we proposed a linear process of readiness with 3 domains: a cognitive domain (awareness), an emotional domain (acceptance), and a behavioral domain (willingness), which preceded preparedness. RESULTS: Findings led to conceptual model refinement showing readiness is a dynamic internal process that interacts with preparedness. Current awareness context facilitates the type of preparedness discussions (cognitive or emotional). Furthermore, social constraint inhibits discussions. CONCLUSIONS: Data support theoretical understanding of the dynamism of readiness. Future research that validates adolescent conceptualization will ensure age-appropriate readiness representation. IMPLICATIONS FOR PRACTICE: Understanding the dynamic process of readiness for engaging in end-of-life preparedness provides clinician insight for guiding discussions that facilitate shared decision making and promote quality of life for adolescents and their families.
Bell CJ; Zimet GD; Hinds PS; Broome ME; McDaniel AM; Mays RM; Champion VL
Cancer Nursing
2017
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/ncc.0000000000000465" target="_blank" rel="noreferrer">10.1097/ncc.0000000000000465</a>
Surprised by Benefit in Pediatric Palliative Care Research
Palliative Care
Weaver MS; Bell CJ; Diver JL; Jacobs S; Lyon ME; Mooney-Doyle K; Newman AR; Slutsman J; Hinds PS
Cancer Nursing
2018
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/NCC.0000000000000576" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000576</a>
The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review
pediatric palliative care; benefits and burdens; palliative care research
OBJECTIVE: The aim of this study is to report the benefits and burdens of palliative research participation on children, siblings, parents, clinicians, and researchers. BACKGROUND: Pediatric palliative care requires research to mature the science and improve interventions. A tension exists between the desire to enhance palliative and end-of-life care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. METHODS: Systematic review followed PRISMA guidelines with prepared protocol registered as PROSPERO #CRD42018087304. MEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, and The Cochrane Library were searched (2000-2017). English-language studies depicting the benefits or burdens of palliative care or end-of-life research participation on either pediatric patients and/or their family members, clinicians, or study teams were eligible for inclusion. Study quality was appraised using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Twenty-four studies met final inclusion criteria. The benefit or burden of palliative care research participation was reported for the child in 6 papers; siblings in 2; parents in 19; clinicians in 3; and researchers in 5 papers. Benefits were more heavily emphasized by patients and family members, whereas burdens were more prominently emphasized by researchers and clinicians. No paper utilized a validated benefit/burden scale. DISCUSSION: The lack of published exploration into the benefits and burdens of those asked to take part in pediatric palliative care research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and end-of-life research design and reporting.
Weaver MS; Mooney-Doyle K; Kelly KP; Montgomery K; Newman AR; Fortney CA; Bell CJ; Spruit JL; Kurtz U M; Wiener L; Schmidt CM; Madrigal VN; Hinds PS
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.2018.0483" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0483</a>
The Road to Readiness: Guiding Families of Children and Adolescents with Serious Illness Toward Meaningful Advance Care Planning Discussions
adolescents; Advance care planning; children; readiness; serious illness
Seriously ill children, adolescents, and young adults (C-AYA) live with a heavy symptom burden, uncertain or poor prognoses, and evolving expectations of their disease course that require health care professionals (HCPs) to facilitate and maintain meaningful conversations across clinical settings. Caring for C-AYA with life-threatening illnesses is complex for family caregivers and HCPs. Among […]
Wiener L; Bell CJ; Spruit JL; Weaver MS; Thompson AL
NAM Perspectives
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/10.31478/202108a" target="_blank" rel="noreferrer noopener">10.31478/202108a</a>
Describing Pediatric Palliative Care Concepts to Patients and Families #442
article; child; human; palliative; therapy
Pediatric palliative care teams provide an additional layer of continuity and support to children and families throughout the course of any serious illness. The mentioned concepts offer support to a child's primary medical team who play an instrumental role in educating patients and families about palliative care and fostering appropriate and timely integration of pediatric palliative care services. © Copyright 2022, Mary Ann Liebert, Inc., publishers 2022.
Bell CJ
Journal of Palliative Medicine
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/10.1089/jpm.2022.0240">10.1089/jpm.2022.0240</a>