Voicing My CHOiCES: A Planning Guide for Adolescents & Young Adults
Lori Wiener, Ph.D., DCSW, LCSW-C
Lori Wiener, Ph.D., is co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program. As both a clinician and behavioral scientist, Dr. Wiener has dedicated her career to the fields of oncology and pediatric HIV/AIDS.
Pediatric Psycho-Oncology Professionals
Visit the Pediatric Psycho-Oncology Professionals website, which was developed to foster international collaborations in clinical care, research, and education in this field.
1) pediatric cancer, 2) pediatric HIV/AIDS, 3) psychosocial oncoloogy,
4) psychosocial studies, 5) therapeutic resources, 6) support
Development and Psychometric Testing of a Pediatric Chronic GVHD Symptom Scale (PCSS)Open - Not yet Recruiting Summary Not Yet Available. Call Referral Contact.NCI Protocol ID NCI-19-C-0121Investigator Lori Wiener, Ph.D., DCSW, LCSW-C
Psychosocial Support and Research Program
Dr. Wiener’s early research focused on critical clinical issues that had not previously been studied in the human immunodeficiency virus (HIV) field, including parental needs and coping, father's experiences, sibling issues, diagnosis disclosure, and loss and bereavement. In the past several years, her research within pediatric oncology has focused on distress screening, lone parenting, transnational parenting, couples dyadic coping, emotional consequences of medically required isolation, sibling donor experiences, and end-of-life planning. She holds a special interest in understanding the psychosocial experiences and needs of youth living with rare diseases, including graft-versus host disease (GVHD), gastrointestinal stromal tumor (GIST) and medullary thyroid carcinoma.
The current Psychosocial Support and Research Program carries out research both in support of NCI and NIH investigators and to further the field of pediatric psycho-oncology. Several multi-institutional protocols have been designed to address and evaluate pediatric psychosocial therapeutic tools and interventions; several are actively accruing participants.
In addition to Dr. Wiener's NCI studies, she also directs several studies that are sponsored by the NIH Office of Human Subjects Research (OHSR) and the National Institute of Mental Health (NIMH):
- OHSR 00386 - The End-of-Life and Bereavement Care Practices of Medical Institutions
- OHSR 13360 - Evaluation of Practice Guidelines for the Assessment and Surveillance Follow-Up of Pediatric Hematopoietic Stem Cell Donors
- OHSR 4799 - Psychosocial and Education Intervention for Pediatric Patients on Medical Isolation
- OHSR 5736 - Pediatric Amputation: The Experience of a Pediatric Amputee and Current Clinical Practice
- NIMH-15-M-0109 - Checking Out Checking In: The Development and Validation of an Electronic Screening Tool for Pediatric Psychosocial Distress
Selected Recent Publications
Considerations for the cross-cultural adaptation of an advance care planning guide for youth with cancer.Clinical Practice in Clinical Oncology. 6(4): 341-354, 2019. [ Journal Article ]
- Psychooncology. 27(12): 2869-2872, 2018. [ Journal Article ]
The impact of childhood cancer on the parents' relationship: Perceptions of what strengthens or strains the couples' emotional connection.Psycho-Oncology. 26: 2109-2117, 2017. [ Journal Article ]
Standards for Psychosocial Care for Children With Cancer and Their Families: An Introduction to the Special Issue.Pediatr Blood Cancer. [Epub ahead of print - Sep. 23], 2015. [ Journal Article ]
Child and parent perspectives of the chronic graft-versus-host disease (cGVHD) symptom experience: a concept elicitation study .Support Care Cancer. 22(2): 295-305, 2014. [ Journal Article ]
Lori Wiener, Ph.D. is co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program. As both a clinician and behavioral scientist, Dr. Wiener has dedicated her career to the fields of oncology and pediatric HIV/AIDS. Dr. Wiener received her Ph.D. in social work from New York University in 1988. She joined NIH in 1986 and then NCI's Pediatric Oncology Branch in 2006 where she developed a robust clinical and research program. Prior to joining NCI, Dr. Wiener worked with adults undergoing treatment for cancer at Memorial Sloan Kettering Cancer Center and as a pioneer in the early AIDS epidemic, running the first support groups with persons living with what was then referred to as gay related immune disease (GRID) and AIDS related complex (ARC).
Dr. Wiener has dedicated a substantial part of her career to applying knowledge from her clinical experience and psychosocial studies to create innovative resources such as therapeutic workbooks for children with cancer, their siblings, bone marrow donors and children living with neurofibromatosis type 1 (NF1); therapeutic games for medically challenged children, siblings and children whose parents have cancer (ShopTalk); and an advance care planning guide for adolescents and young adults (Voicing My CHOiCES). Each of these resources are distributed worldwide and are widely utilized in pediatric centers. The Psychosocial Support and Research Program also developed and hosts the Pediatric Psycho-Oncology Professionals website.
Dr. Wiener has been an active member of the Board of Directors of The Children’s Inn at NIH since its inception and is the federal liaison for the Board of Trustees of the American Psychosocial Oncology Society where she chairs the Pediatric Special Interest Group (SIG). She has been given the distinction of Fellow at the American Psychological Association in recognition of Outstanding and Unusual Contributions to the Science and Profession of Psychology and at the American Psychosocial Oncology Society in Recognition of Outstanding Contributions in Psycho-Oncology. Dr. Wiener has been a part of the leadership team that has developed the first evidence-based psychosocial standards of care for children with cancer and their family members.
Dr. Wiener has published widely in peer-reviewed scientific journals and has co-written many book chapters. She is the lead editor on the 1st and 2nd editions of the Quick Reference Book for Pediatric Oncology Clinicians: The Psychiatric and Psychological Dimensions of Pediatric Cancer Symptom Management and is co-editor of Pediatric Psychosocial Oncology: Textbook for Multi-disciplinary Care. Dr. Wiener has been invited to speak about her research with children, adolescents and young adults living with cancer and their families at both national and international conferences, and enjoys being a mentor to many early career professionals worldwide.
|Haven Brill Battles||Clinical Support Assistant (Contr.)|
|Abigail Fry||Postbaccalaureate Fellow (CRTA)|
|Sima Zadeh, PsyD||Research Fellow|