title: Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  Data support theoretical understanding of the dynamism of readiness. Future research that validates adolescent conceptualization will ensure age-appropriate readiness representation.
  
  
  
  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.
authors.affiliation: Author Affiliations: College of Nursing, Department of Family, Community and Mental Health, Wayne State University, Detroit, Michigan (Dr Bell); Department of Adolescent Medicine, Indiana University, Indianapolis (Dr Zimet); Children's National Health System, Washington, DC (Dr Hinds); School of Nursing, Duke University, Durham, North Carolina (Dr Broome); College of Nursing, University of Florida, Gainesville (Dr McDaniel); and School of Nursing, Indiana University (Drs Mays and Champion); and Indiana University Melvin & Bren Simon Cancer Center (Dr Champion), Indianapolis.
authors.forename: Cynthia J
authors.initials: CJ
authors.lastname: Bell
authors.forename: Gregory D
authors.initials: GD
authors.lastname: Zimet
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.forename: Marion E
authors.initials: ME
authors.lastname: Broome
authors.forename: Anna M
authors.initials: AM
authors.lastname: McDaniel
authors.forename: Rose M
authors.initials: RM
authors.lastname: Mays
authors.forename: Victoria L
authors.initials: VL
authors.lastname: Champion
mesh_terms: D000293:Adolescent; D000294:Adolescent Behavior / Q000523:psychology*; D001293:Attitude to Death; D003142:Communication; D003657:Decision Making; D005260:Female; D006117:Grief; D006801:Humans; D008297:Male; D008962:Models, Theoretical; D010166:Palliative Care / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology*; D055815:Young Adult