Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives.

Autor:	Bedoya SZ; Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Fry A; Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Gordon ML; Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States., Lyon ME; Children's National Hospital, Washington, DC, United States., Thompkins J; Children's National Hospital, Washington, DC, United States., Fasciano K; Dana-Farber Cancer Institute, Boston, MA, United States., Malinowski P; Dana-Farber Cancer Institute, Boston, MA, United States., Heath C; Cook Children's Medical Center, Fort Worth, TX, United States., Sender L; Children's Hospital Orange County, Orange, CA, United States., Zabokrtsky K; Children's Hospital Orange County, Orange, CA, United States., Pao M; National Institute of Mental Health, Bethesda, MD, United States., Wiener L; Center for Cancer Research, National Cancer Institute, Bethesda, MD, United States.
Jazyk:	angličtina
Zdroj:	Frontiers in psychology [Front Psychol] 2022 Jun 08; Vol. 13, pp. 871042. Date of Electronic Publication: 2022 Jun 08 (Print Publication: 2022).
DOI:	10.3389/fpsyg.2022.871042
Abstrakt:	Background and Aims: End-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)-a research-informed advance care planning (ACP) guide-increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared. Methods: Family, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis. Results: One-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC. Conclusions: VMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult. Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. (Copyright © 2022 Bedoya, Fry, Gordon, Lyon, Thompkins, Fasciano, Malinowski, Heath, Sender, Zabokrtsky, Pao and Wiener.)
Databáze:	MEDLINE
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