Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions

Cynthia J. Bell, Gregory Zimet, Pamela S. Hinds, Marion E. Broome, Anna M. McDaniel, Rose M. Mays, Victoria Champion

Research output: Contribution to journalArticle

3 Citations (Scopus)

Abstract

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 à 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.

Original languageEnglish (US)
JournalCancer Nursing
DOIs
StateAccepted/In press - Jan 20 2017

Fingerprint

Hospice Care
Clinical Trials, Phase I
Grief
Palliative Care
Decision Making
Emotions
Quality of Life
Interviews
Research
Neoplasms
Therapeutics

ASJC Scopus subject areas

  • Oncology
  • Oncology(nursing)

Cite this

Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions. / Bell, Cynthia J.; Zimet, Gregory; Hinds, Pamela S.; Broome, Marion E.; McDaniel, Anna M.; Mays, Rose M.; Champion, Victoria.

In: Cancer Nursing, 20.01.2017.

Research output: Contribution to journalArticle

Bell, Cynthia J. ; Zimet, Gregory ; Hinds, Pamela S. ; Broome, Marion E. ; McDaniel, Anna M. ; Mays, Rose M. ; Champion, Victoria. / Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions. In: Cancer Nursing. 2017.
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abstract = "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.",
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