Katherine Schreiner1, Daniel H Grossoehme2,3,4, Sarah Friebert2,3, Justin N Baker5, Jennifer Needle6, Maureen E Lyon1,7. 1. George Washington School of Medicine and Health Sciences, Washington, District of Columbia. 2. Akron Children's Hospital, Rebecca D. Considine Research Institute, Akron, Ohio. 3. Akron Children's Hospital, Haslinger Family Pediatric Palliative Care Center, Akron, Ohio. 4. Department of Family and Community Medicine, Northeast Ohio Medical University, Rootstown, Ohio. 5. Division of Quality of Life and Palliative Care, Department of Oncology, St Jude Children's Research Hospital, Memphis, Tennessee. 6. Division of Pediatric Critical Care Medicine, University of Minnesota, Minneapolis, Minnesota. 7. Division of Adolescent and Young Adult Medicine, Children's National Hospital, Center for Translational Research/Children's National Research Institute, Washington, District of Columbia.
Abstract
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 structured Respecting Choices interviews 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.
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 structured Respecting Choices interviews 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.
Authors: Katherine B Curtin; Anne E Watson; Jichuan Wang; Obianuju C Okonkwo; Maureen E Lyon Journal: Contemp Clin Trials Date: 2017-08-24 Impact factor: 2.226
Authors: Celeste R Phillips; Joan E Haase; Marion E Broome; Janet S Carpenter; Richard M Frankel Journal: Int J Qual Stud Health Well-being Date: 2017-12
Authors: Sarah Friebert; Daniel H Grossoehme; Justin N Baker; Jennifer Needle; Jessica D Thompkins; Yao I Cheng; Jichuan Wang; Maureen E Lyon Journal: JAMA Netw Open Date: 2020-05-01
Authors: Ursula M Sansom-Daly; Lori Wiener; Anne-Sophie Darlington; Hanneke Poort; Abby R Rosenberg; Meaghann S Weaver; Fiona Schulte; Antoinette Anazodo; Celeste Phillips; Louise Sue; Anthony R Herbert; Jennifer W Mack; Toni Lindsay; Holly Evans; Claire E Wakefield Journal: PLoS One Date: 2022-07-08 Impact factor: 3.752