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

      brief-report

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          Abstract

          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.

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          Most cited references60

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          Using thematic analysis in psychology

          Virginia Braun, Victoria Clarke (2014)
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            Qualitative research: standards, challenges, and guidelines.

            K Malterud (2001)
            Qualitative research methods could help us to improve our understanding of medicine. Rather than thinking of qualitative and quantitative strategies as incompatible, they should be seen as complementary. Although procedures for textual interpretation differ from those of statistical analysis, because of the different type of data used and questions to be answered, the underlying principles are much the same. In this article I propose relevance, validity, and reflexivity as overall standards for qualitative inquiry. I will discuss the specific challenges in relation to reflexivity, transferability, and shared assumptions of interpretation, which are met by medical researchers who do this type of research, and I will propose guidelines for qualitative inquiry.
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              Codebook Development for Team-Based Qualitative Analysis

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              Article 0 comments Cited 187 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Journal
                Journal ID (nlm-ta): Front Psychol
                Journal ID (iso-abbrev): Front Psychol
                Journal ID (publisher-id): Front. Psychol.
                Title: Frontiers in Psychology
                Publisher: Frontiers Media S.A.
                ISSN (Electronic): 1664-1078
                Publication date (Electronic): 08 June 2022
                Publication date Collection: 2022
                Volume: 13
                Electronic Location Identifier: 871042
                Affiliations
                [1] 1Center for Cancer Research, National Cancer Institute , Bethesda, MD, United States
                [2] 2Children’s National Hospital , Washington, DC, United States
                [3] 3Dana-Farber Cancer Institute , Boston, MA, United States
                [4] 4Cook Children’s Medical Center , Fort Worth, TX, United States
                [5] 5Children’s Hospital Orange County , Orange, CA, United States
                [6] 6National Institute of Mental Health , Bethesda, MD, United States
                Author notes

                Edited by: Ellen van der Plas, The University of Iowa, United States

                Reviewed by: Catarina Samorinha, University of Sharjah, United Arab Emirates; Flora Koliouli, National and Kapodistrian University of Athens, Greece

                *Correspondence: Sima Z. Bedoya, sima.bedoya@ 123456nih.gov

                This article was submitted to Psycho-Oncology, a section of the journal Frontiers in Psychology

                Article
                DOI: 10.3389/fpsyg.2022.871042
                PMC ID: 9215331
                PubMed ID: 35756319
                SO-VID: 1f7d57fd-a7d0-4c89-a14f-aa4400107ce1
                Copyright © Copyright © 2022 Bedoya, Fry, Gordon, Lyon, Thompkins, Fasciano, Malinowski, Heath, Sender, Zabokrtsky, Pao and Wiener.
                License:

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                Date received : 07 February 2022
                Date accepted : 19 April 2022
                Page count
                Figures: 0, Tables: 3, Equations: 0, References: 60, Pages: 8, Words: 6408
                Categories
                Subject: Psychology
                Subject: Brief Research Report

                ScienceOpen disciplines: Clinical Psychology & Psychiatry
                Keywords: aya family,friends,hcp,adolescent and young adult,advance care planning,eol discussions,voicing my choices,communication
                Data availability:
                ScienceOpen disciplines: Clinical Psychology & Psychiatry
                Keywords: aya family, friends, hcp, adolescent and young adult, advance care planning, eol discussions, voicing my choices, communication

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