TY - JOUR
T1 - Adolescent and Young Adult Initiated Discussions of Advance Care Planning
T2 - Family Member, Friend and Health Care Provider Perspectives
AU - Bedoya, Sima Z.
AU - Fry, Abigail
AU - Gordon, Mallorie L.
AU - Lyon, Maureen E.
AU - Thompkins, Jessica
AU - Fasciano, Karen
AU - Malinowski, Paige
AU - Heath, Corey
AU - Sender, Leonard
AU - Zabokrtsky, Keri
AU - Pao, Maryland
AU - Wiener, Lori
N1 - Funding Information:
This work was funded in part by the Center for Cancer Research, National Institutes of Health Intramural Research Program.
Publisher Copyright:
Copyright © 2022 Bedoya, Fry, Gordon, Lyon, Thompkins, Fasciano, Malinowski, Heath, Sender, Zabokrtsky, Pao and Wiener.
PY - 2022/6/8
Y1 - 2022/6/8
N2 - 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.
AB - 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.
KW - AYA family
KW - EoL discussions
KW - HCP
KW - Voicing My CHOiCES
KW - adolescent and young adult
KW - advance care planning
KW - communication
KW - friends
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UR - http://www.scopus.com/inward/citedby.url?scp=85133309473&partnerID=8YFLogxK
U2 - 10.3389/fpsyg.2022.871042
DO - 10.3389/fpsyg.2022.871042
M3 - Article
C2 - 35756319
AN - SCOPUS:85133309473
SN - 1664-1078
VL - 13
JO - Frontiers in Psychology
JF - Frontiers in Psychology
M1 - 871042
ER -