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)
Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.
Genetics in medicine : official journal of the American College of Medical Genetics
PURPOSE: Social media may be particularly valuable in research in rare genetic diseases because of the low numbers of patients and the rare disease community's robust online presence. The goal of this systematic review was to understand how social media is currently used in rare disease research and the characteristics of the participants in these studies.METHODS: We conducted a systematic review of six databases to identify studies published in English between January 2004 and November 2020, of which 120 met inclusion criteria.RESULTS: Most studies were observational (n=114, 95.0%) and cross-sectional (n=107, 89.2%), and more than half (n=69, 57.5%) utilized only surveys. Only 101 rare diseases were included across all studies. Participant demographics, when reported, were predominantly female (70.1% ± 22.5%) and white (85.0% ± 11.0%) adult patients and caregivers.CONCLUSION: Despite its potential benefits in rare disease research, the use of social media is still methodologically limited and the participants reached may not be representative of the rare disease population by gender, race, age, or rare disease type. As scholars explore using social media for rare disease research, careful attention should be paid to representativeness when studying this diverse patient community.
View details for DOI 10.1038/s41436-021-01273-z
View details for PubMedID 34282302
"Doctors can read about it, they can know about it, but they've never lived with it": How parents use social media throughout the diagnostic odyssey.
Journal of genetic counseling
Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post-diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi-structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team-based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the "right" community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.
View details for DOI 10.1002/jgc4.1438
View details for PubMedID 34096130
Genetic counseling and testing for Asian Americans: a systematic review.
Genetics in medicine : official journal of the American College of Medical Genetics
PURPOSE: Asian Americans have been understudied in the literature on genetic and genomic services. The current study systematically identified, evaluated, and summarized findings from relevant qualitative and quantitative studies on genetic health care for Asian Americans.METHODS: A search of five databases (1990 to 2018) returned 8,522 unique records. After removing duplicates, abstract/title screening, and full text review, 47 studies met inclusion criteria. Data from quantitative studies were converted into "qualitized data" and pooled together with thematic data from qualitative studies to produce a set of integrated findings.RESULTS: Synthesis of results revealed that (1) Asian Americans are under-referred but have high uptake for genetic services, (2) linguistic/communication challenges were common and Asian Americans expected more directive genetic counseling, and (3) Asian Americans' family members were involved in testing decisions, but communication of results and risk information to family members was lower than other racial groups.CONCLUSION: This study identified multiple barriers to genetic counseling, testing, and care for Asian Americans, as well as gaps in the research literature. By focusing on these barriers and filling these gaps, clinical genetic approaches can be tailored to meet the needs of diverse patient groups, particularly those of Asian descent.
View details for DOI 10.1038/s41436-021-01169-y
View details for PubMedID 33972720
Beyond diagnosis: understanding the downstream impacts of genome sequencing for undiagnosed rare diseases
ACADEMIC PRESS INC ELSEVIER SCIENCE. 2021: S290
View details for Web of Science ID 000639219800446
- The Invisibility of Asian Americans in COVID-19 Data, Reporting, and Relief. The American journal of bioethics : AJOB 2021; 21 (3): 100–102
- "Race was something we didn't talk about": Racial Socialization in Asian American Families FAMILY RELATIONS 2020
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