Received: 11 February 2018 Revised: 9 August 2018 Accepted: 10 August 2018 DOI: 10.1002/pbc.27445 Pediatric Blood & Cancer The American Society of Pediatric Hematology/Oncology RESEARCH ARTICLE “A change in perspective”: Exploring the experiences of adolescents with hereditary tumor predisposition Evan Weber 1,2,3,4 Cheryl Shuman 1,2,3 Jonathan D. Wasserman 5 Maru Barrera 6,7 Andrea F. Patenaude 8 Karen Fung 9 David Chitayat 1,2,10 David Malkin 7 Harriet Druker 1,3,7 1 Department of Molecular Genetics, University of Toronto, Toronto, Ontario, Canada 2 Division of Clinical and Metabolic Genetics, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada 3 Department of Genetic Counselling, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada 4 Department of Medical Genetics, McGill University Health Centre, Montreal, Quebec, Canada 5 Division of Endocrinology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada 6 Department of Psychology, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada 7 Division of Hematology/Oncology, Department of Pediatrics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada 8 Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Harvard Medical School, Boston, Massachusetts 9 Department of Social Work, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada 10 Prenatal Diagnosis and Medical Genetics Program, Department of Obstetrics and Gynecology, Mount Sinai Hospital, University of Toronto, Toronto, Ontario, Canada Correspondence Evan Weber, MSc, CGC, CCGC, Medical Genetics, A04.3140, McGill University Health Centre, 1001 Decarie Boulevard, Montreal, Quebec H4A 3J1, Canada Email: evan.weber@muhc.mcgill.ca Funding information MSc in Genetic Counselling Fund, University of Toronto Abstract Background: Hereditary tumor predisposition syndromes (HTPSs) are being recognized more fre- quently in the etiology of pediatric cancer. Previous research indicates that disclosure of tumor susceptibility is a significant event in adolescents’ lives. Insight into adolescents’ adjustment to knowledge of their syndromes can guide healthcare delivery, particularly genetic counseling. This study explored the experiences of adolescents with hereditary tumor predisposition and their perceptions of living at risk. Methods: Seven adolescents, ages 14 to 17, representing six different childhood-onset HTPSs, were purposively sampled and interviewed using a study-specific semistructured interview guide. We explored the disclosure process, support systems, and the perceived benefits and harms of knowledge of hereditary tumor susceptibility. Interview transcripts were analyzed via interpretive description. Results: Three major themes emerged from the data: (1) The benefits of knowledge outweigh the harms; (2) context surrounding genetic testing must be recognized; and (3) self-concept is influenced but not defined by tumor risk. Conclusions: We conclude that adolescents recognize the challenges associated with aware- ness of tumor predisposition but may also identify positive aspects in their experiences, reflect- ing a changed life perspective. Results of this exploratory study suggest strategies that can guide pretest and posttest genetic counseling of adolescents for HTPSs, facilitating the adaptive incorporation of genetic information into an adolescent's self-concept. KEYWORDS adolescence, genetic counseling, hereditary cancer, psychosocial impact, qualitative research Pediatr Blood Cancer. 2018;e27445. c  2018 Wiley Periodicals, Inc. 1 of 8 wileyonlinelibrary.com/journal/pbc https://doi.org/10.1002/pbc.27445