Session: Studying the Lived Experience of Transitioning to Adulthood in the Context of Cancer: Embodied Research in Adolescent and Young Adult Oncology (Society for Social Work and Research 25th Annual Conference - Social Work Science for Social Change)

All live presentations are in Eastern time zone.

100 Studying the Lived Experience of Transitioning to Adulthood in the Context of Cancer: Embodied Research in Adolescent and Young Adult Oncology

Wednesday, January 20, 2021: 6:30 PM-7:30 PM
Cluster: Health
Symposium Organizer:
Allison Werner-Lin, PhD, University of Pennsylvania
Allison Werner-Lin, PhD, University of Pennsylvania
Nationally, 70,000 adolescent and young adults (AYA), defined as aged 15-39 years, are diagnosed with cancer each year. This is six-fold the number of pediatric diagnoses (Coccia, 2019). Unique genetic, biological, psychological, and social components may contribute to higher morbidity and mortality for this group (Close, Dreyzin, Miller, Seynnaeve and Rapkin, 2019). Common diagnoses include leukemia, lymphoma, testicular, and thyroid cancers among individuals aged 15-24, and breast cancer and melanoma for individuals aged 25-39. Therapies targeted to this age group are not yet deployed into standard care.

A growing literature distinguishes the AYA population from more well-studied pediatric and older adult populations. Cancer during the AYA years is out of synch with social conceptions of a normative diagnostic timeline which cast pediatric diagnoses as tragic and older adult diagnoses as anticipated. To assure adequate and appropriate care, health care providers must consider the unique life cycle transitions that characterize the adolescent and young adult years alongside diagnostic and treatment related distress, uncertainty regarding survival, adaptation to long-term treatment effects, caregiving from parents and partners, and transitioning from resource-intensive pediatric units to adult oncology care. Further, these years mark a significant exploration and commitment to familial roles and social identities, reinforced through revolutionary access to social media, that may be influenced by cancer in debilitating and adaptive ways.

We begin this symposium with embodied research on patients internet experiences, a study by patient-researchers of internet utilization needs, content preferences, and cultural challenges. Barriers to targeted care for AYAs with Li-Fraumeni Syndrome identifies the challenges of finding knowledgeable providers to address biomedical and psychosocial concerns of patients with pathogenic familial mutations. Psychosocial oncology care delivery for young women with breast cancer and their partners contextualizes psycho-oncology care in family life, addressing couples informational, emotional, and pragmatic support needs. Sexual and gender plurality: considerations for a diverse and inclusive approach to quality care explores providers heteronormative assumptions and delivery of reproductive health (i.e. oncofertility) services to gender and sexual minority patients. We end with a psychosocial intervention for families coping with an advanced cancer diagnosis, a pilot intervention study of families with young children where one parent has metastatic disease. We will address these common themes:

-What are the unique social and relational needs of adolescents and young adults in the oncology setting?

-What is the range of possible psychosocial implications for AYAs with cancer and their loved ones?

-How can we expand and refine a role of social work within AYA oncology to craft innovative interventions that address these needs?

This panel represents a range of methodological approaches and embodied research: all presenters have experienced cancer personally or in their family network. Data collection and analytic methods include self-report surveys, content analysis of national guidelines, in-depth interviews, and pre-post test evaluation of intervention feasibility and acceptability. All studies were approved by authors respective IRBs. Each presenter will discuss how collaborative planning with interprofessional teams, including social workers, can help to identify and ameliorate the challenges unique to AYAs with cancer.

* noted as presenting author
Thin Line between Helpful and Not: Embodied Research on Internet Experiences Among Adolescent and Young Adult Cancer Patients
Christabel Cheung, PhD, University of Maryland at Baltimore; Monica Norlander, MPH, Northwestern Medicine; Adriana Vest, PhD, Emory University School of Medicine; Brad Zebrack, PhD, MSW, MPH, University of Michigan
Breaking through Barriers: Identifying Healthcare Challenges for Adolescents and Young Adults Living with Li-Fraumeni Syndrome
Catherine Wilsnack, MSW, National Cancer Institute; Camella Rising, PhD, National Cancer Institute; Alix Sleight, PhD, National Cancer Institute; Pat Boyd, PhD, National Cancer Institute; Payal Khincha, MD, National Cancer Institute; Allison Werner-Lin, PhD, University of Pennsylvania
Informing Psychosocial Oncology Care Delivery for Young Women with Breast Cancer and Their Partners: A Cross-Sectional Examination of Unmet Service Needs in the First Year Post-Diagnosis
Chiara Acquati, PhD, LMSW, University of Houston; Amy LaMarca-Lyon, LCSW, UT MD Anderson Cancer Center; Lynsay Gaines, LCSW-S, The University of Texas Health Science Center; Miljana Bajic, MSW, University of Houston; Kristin Cotter Mena, PhD, Datatude, Inc.; Yu-Ju Huang, MSW, University of Houston; Richard Wagner, LPC, LMHC, University of Houston
Sexual and Gender Plurality: Considerations for a Diverse and Inclusive Approach to Quality Care for Adolescents and Young Adults with Cancer
Nina Jackson Levin, MSW, UNIVERSITY OF MICHIGAN; Brad Zebrack, PhD, MSW, MPH, University of Michigan-Ann Arbor, University of Michigan; Anao Zhang, Ph.D., University of Michigan-Ann Arbor
Wonders & Worries Advanced Cancer: A Psychosocial Intervention for Families Coping with an Advanced Cancer Diagnosis
Farya Phillips, PhD, University of Texas at Austin; Barbara Jones, PhD, University of Texas at Austin; Elizabeth Kvale, MD, MSPH, University of Texas at Austin
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