Testing an Advance Care Planning Tool for Emerging Adults in Cancer Care: A Patient-Centered Perspective

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Degree type
Doctor of Social Work (DSW)
Graduate group
Discipline
Social Work
Subject
Advance care planning
Cancer
Emerging adults (EA)
Adolescent and young adults (AYA)
Developmental theory
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Copyright date
2025-05-12
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Author
Devon Ciampa
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Abstract

BACKGROUND AND PURPOSE: Emerging Adults (18-29 years, EAs) are a unique subgroup within the adolescent and young adult (AYA) oncology population. Studies of advance care planning (ACP) with EAs are scarce, despite this unique period in the lifespan. Theoretical and empirical work suggest developmental tasks of EAs include seeking independence, changes in relationships, and identity exploration. These tasks may conflict with, or be compromised by, the challenges of serious illness making this a vulnerable, yet critical, time to discuss ACP. This study aimed to increase understanding of how EAs interact with ACP and how health professionals can improve care of this population. METHOD: Structured interview data was collected through the study “Study of Voicing My CHOiCES (VMC) as a Tool for Advance Care Planning in Young Adults with Cancer” with 39 EA participants at The John Hopkins Hospital and the National Institutes of Health. English speaking EAs currently in treatment were eligible. Using a thematic content approach, themes addressed the following questions: 1) What do EAs want to focus on in ACP? 2) What are the benefits, burdens, and barriers to ACP with EAs? and (3) How can VMC assist EAs in ACP? FINDINGS: First, EAs requested ways to control their ACP process through more personalized choice. Second, EAs placed importance on the needs of loved ones. Finally, EAs valued a document that used age-appropriate language to learn about ACP and have support in facilitating difficult conversations. CONCLUSION AND IMPLICATIONS: Thirty-seven participants stated that using VMC provided desired control over choices and communication guidance, thus ensuring their preferences would be honored and their loved ones would be cared for. For these EAs facing a life-threatening illness, developmental tension was exacerbated by the loss of newfound independence and freedom of choice. Findings suggest health and mental health professionals might optimally ground resources and assistance with ACP in developmental practice models. Further, EAs need access to trained professionals with age-appropriate tools to facilitate ACP discussions in the dual contexts of significant developmental change and (unexpected) illness and early mortality.

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Werner-Lin, Allison
Date of degree
2025-05-19
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