Dr. Jennifer Young is a trained couples and family therapist working across the fields of public health, mental health, family systems, and genetics. She completed her PhD in Family Science at the University of Maryland in June 2018. Prior to receiving her doctorate, she received a BA (Psychology and Chinese) from the University of Wisconsin Madison, an MA (East Asian Languages and Literature) from The Ohio State University, and an MS in Couples and Family Therapy from the University of Maryland. She recently completed a four-year fellowship at the NIH in the National Cancer Institute’s Clinical Genetics Branch where she worked as a psychosocial qualitative research specialist and mental health clinician. At the NCI, her dissertation research outlined the unique social and psychological needs of families with a Li Fraumeni Syndrome, a rare cancer predisposition syndrome. Her research currently focuses on advocacy for culturally competent mental health resources for families undergoing genetic testing for inherited health conditions.
Doctor of Philosophy, University of Maryland College Park (2018)
Master of Science, University of Maryland College Park (2014)
Master of Arts, Ohio State University (2012)
Bachelor of Arts, University of Wisconsin Madison (2009)
Waiting and "weighted down": the challenge of anticipatory loss for individuals and families with Li-Fraumeni Syndrome.
Li-Fraumeni Syndrome (LFS) is characterized by risk of multiple primary malignancies in diverse sites, pediatric onset, near complete penetrance by age 70years, limited options for prevention, and substantial uncertainty regarding disease manifestation and prognosis. Forty-five families, including 117 individuals aged 13-81years, enrolled in the US National Cancer Institute's Li-Fraumeni Syndrome Study completed 66 interviews regarding their LFS experiences. An interdisciplinary team used modified grounded theory to examine family distress regarding expectations of loss and change due to likely cancer diagnoses, and the consequences of this likelihood across physical, social, and emotional domains. Disease-free periods were characterized by fearful anticipation of diagnosis or recurrence, uncertainty regarding post-treatment quality of life, and planning for shifts in family dynamics to enable caregiving. The chronicity of waiting for these changes incited dread and inhibited effective coping with the pragmatic, emotional, and existential challenges of the syndrome. Consequently, families reported high burden on roles and resources and limited guidance to prepare for, or achieve resolution with, grief. Anticipatory loss, the experience of bereavement prior to an expected change, distinguishes hereditary cancer risk from a sporadic diagnosis. Such grief is often incomplete in impact or meaning, subjected to rapid or profound change as conditions worsen, and poorly understood. In this study, losses were compounded by profound uncertainty, a chronic feature of LFS, which compromised mourning. Long-term engagement of mental health providers with bereavement training, in partnership with genetics providers, can provide invaluable educational and psychological support to families as they navigate these implacable challenges.
View details for DOI 10.1007/s10689-020-00173-6
View details for PubMedID 32222840
Health behavior change is related to management of cancer worry for families with Li-Fraumeni syndrome: "If you just change your diet, you're going to get cured"
WILEY. 2020: 99–100
View details for Web of Science ID 000514591500203
Couples coping with screening burden and diagnostic uncertainty in Li-Fraumeni syndrome: Connection versus independence
JOURNAL OF PSYCHOSOCIAL ONCOLOGY
2019; 37 (2): 178–93
Li-Fraumeni Syndrome (LFS) is an inherited tumor predisposition syndrome with lifetime cancer risks approaching 100% and evolving risk-management strategies. This study evaluated couples' coping with LFS-related burdens.Constructivist grounded theory and anticipatory loss frameworks guided design and analysis.Twenty-six individuals enrolled in the NCI LFS Family Study completed semi-structured interviews with their partner during annual screening visits. An interdisciplinary team completed open and focused coding to identify patterns of coping and adaptation.Couples described living with ambiguous danger, a state of chronic apprehension resulting from LFS-associated uncertainties. Most couples communicated openly and alternated shouldering the burden, while others engaged in protective buffering to shield each other from distress and sustain the appearance of normalcy.Optimally, coping reduces shared psychosocial distress, yet some strategies may inadvertently increase disconnection.Mental health support is critical for both partners coping with LFS, together and separately.
View details for DOI 10.1080/07347332.2018.1543376
View details for Web of Science ID 000465227200005
View details for PubMedID 30591002
Making adult decisions: Family planning in AYAs with LFS
WILEY. 2019: 39
View details for Web of Science ID 000459307700089
Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.
Li-Fraumeni Syndrome (LFS) is a hereditary disorder that confers an approximately 90% lifetime risk of cancer and requires comprehensive lifetime cancer screening. We explored healthcare roles for managing LFS-related cancer risks and treatments that were assumed by parents, adolescents, and adult children. Semi-structured interviews were conducted with 23 families. Family groupings were comprised of 2-5 members, with the younger generation in each family ranging in age from 7 to 40 years. Using grounded theory methods, we conducted open and focused coding of interview transcript content. Family members described how the role of health leader was implemented in their family, as well as factors such as maturation of a child or death of a member that determined who assumed particular roles and how these roles shifted over time. They often expressed collective responsibility for helping relatives understand LFS and implement appropriate cancer risk management. Members demonstrated their health role by attending others' medical appointments for support or information gathering. The health leader role was intergenerational and provided the family necessary support in navigating complicated healthcare decisions. Our findings provide insight into healthcare providers regarding how LFS patients and their relatives develop unique medical decision-making and caring roles influenced by the hereditary nature of LFS, and how these roles change over time. Providers who are attuned to family role dynamics may be better able to meet relatives' psychosocial and medical needs by understanding how living with LFS influences the family system's functioning and facilitating members' support for each other.
View details for DOI 10.1111/famp.12497
View details for PubMedID 31647118
Legacies and Relationships: Diverse Social Networks and BRCA1/2 Risk Management Decisions and Actions.
Journal of family nursing
In families with hereditary breast/ovarian cancer, complex disease histories challenge established patterns of family communication and influence decision-making for clinical surveillance, genetic testing, and risk management. An interdisciplinary team examined longitudinal interview data from women with identified BRCA1/2 mutations to assess interactions within family and social networks about risk information communication and management. We used interpretive description to identify motivation, content, and derived benefit of these interactions. Participants discussed risk information and management strategies with biological and nonbiological network members for multiple purposes: discharging responsibility for risk information dissemination, protecting important relationships, and navigating decision trajectories. Evolving interactions with loved ones balanced long-standing family communication patterns with differing personal preferences for privacy or open sharing, whereas interactions with nonbiological network members expanded participants' range of choices for sources of risk management information. Ongoing assessment of social networks may help support engagement with risk management by aligning with patient social needs.
View details for PubMedID 30537877