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Text
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<a href="http://doi.org/10.1002/pbc.28599" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/pbc.28599</a>
Pages
e28599
ISSN
1545-5009
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Update Year & Number
August 2020 List
NEOMED College
NEOMED College of Medicine
NEOMED Department
Department of Family & Community Medicine
Department of Pediatrics
Affiliated Hospital
Akron Children's Hospital
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Title
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"Living life as if i never had cancer": A study of the meaning of living well in adolescents and young adults who have experienced cancer
Publisher
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Pediatric Blood & Cancer
Subject
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childhood; definition; quality of life; advance care planning; cancer; adolescent; advance care
Creator
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Schreiner K; Grossoehme DH; Friebert S; Baker JN; Needle J; Lyon ME
Description
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Background Cancer diagnoses pose challenges to adolescents' and young adults' (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of "living well" for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health. Procedure Qualitative analysis using a phenomenological approach of N = 30 structuredRespecting Choicesinterviews conducted with AYAs (14-21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial. Results AYAs who have experienced cancer conceptualized "living well" as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age-appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family. Conclusions Conversations with AYAs who have experienced cancer elicited rich, complex concepts of "living well." Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement.
Identifier
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<a href="http://doi.org/10.1002/pbc.28599" target="_blank" rel="noreferrer noopener">10.1002/pbc.28599</a>
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journalArticle
Adolescent
advance care
advance care planning
Akron Children's Hospital
August 2020 List
Baker JN
Cancer
childhood
definition
Department of Family & Community Medicine
Department of Pediatrics
Friebert S
Grossoehme DH
journalArticle
Lyon ME
Needle J
NEOMED College of Medicine
Pediatric blood & cancer
Quality of Life
Schreiner K