Lori Wiener, Ph.D., DCSW, LCSW-C
- Center for Cancer Research
- National Cancer Institute
- Building 10 - Hatfield CRC, Room 1C247B-4
- Bethesda, MD 20892
- 301-451-9148
- wienerl@mail.nih.gov
RESEARCH SUMMARY
Lori Wiener, Ph.D. is an expert in psychosocial care for pediatric, adolescent, and young adult patients with critical illness. As a clinician and behavioral scientist, Dr. Wiener is interested in understanding the psychosocial experiences and needs of youth living with cancer or other serious illness. As co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program she has developed a robust clinical and research program that has focused on critical clinical issues such as parental coping, lone parenting, transnational parenting, sibling and sibling donor experiences, graph versus host disease, and end-of-life planning. This work has led to the creation of innovative resources such as books, workbooks, therapeutic games and an advance care planning guide for children, adolescents, and young adults. Each of these resources are distributed worldwide and widely utilized in pediatric centers.
Dr. Wiener proudly led the team that developed the first evidence-based psychosocial standards of care for children with cancer and their family members helped develop the Pediatric Psycho-Oncology Professionals website, which was created to foster international collaborations in clinical care, research, and education in this field.
Areas of Expertise
Information for Patients
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Lori Wiener, Ph.D., DCSW, LCSW-C
Clinical Trials
Research
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. 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, and RUNX1-FPD.
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.
Current studies include:
- Identifying Predictors of Poor Health-Related Quality-of-Life Among Pediatric Hematopoietic Stem Cell Donors
- Exploring The Role Of Palliative Care In Phase 1 Enrolled Pediatric Oncology Patients
- Longitudinal Early Advance Care Planning Discussions and Documentation (LEADD) Program: An Exploratory Study in Adolescents and Young Adults (AYAs) Receiving Hematopoietic Stem Cell Transplant
- Development and Psychometric Testing of a Pediatric Chronic Graft- Versus-Host Disease (GVHD) Symptom Scale (PCSS)
- Study of Voicing My CHOiCES as a Tool for Advanced Care Planning in Young Adults With Cancer
Click here for a list of Dr. Wiener's clinical trials.
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):
- NIMH-15-M-0109 - Checking Out Checking In: The Development and Validation of an Electronic Screening Tool for Pediatric Psychosocial Distress
Advance Care Planning Discussions in Adolescent and Young Adult (AYA) Recipients of Hematopoietic Stem Cell Transplant (HSCT): a 5-Year Retrospective Review
- OHSR 5736 - Pediatric Amputation: The Experience of a Pediatric Amputee and Current Clinical Practice
- Assessing the Needs of Adolescent and Young Adult (AYA) Patients Treated at the National Institutes of Health Clinical Center - IRB001848
Publications
- Bibliography Link
- View Dr. Wiener's PubMed Summary.
Development and psychometric testing of a pediatric chronic graft-versus-host disease symptom scale: protocol for a two-phase, mixed methods study
Making space for grief: The impact of remembrance programs for pediatric healthcare providers.
Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions
Psychosocial assessment practices for hematopoietic stem cell transplantation: a national survey study
Biography
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. 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 was one of the Founders of The Children’s Inn at NIH. She is the federal liaison for the Board of Trustees of the American Psychosocial Oncology Society where she chairs the Pediatric Special Interest Group (SIG) and the American Psychosocial Oncology Social Workers where she chairs the Research and Publication Committee. Dr. Wiener has was selected as a 2019 NYU Alumni Changemaker for “Visionaries who have leveraged creativity and entrepreneurial spirit for greater good”; with an NIH Director’s Award for Clinical Care and an NCI Director’s Award for “Scientific and medical excellence and the outstanding, compassionate care for patients and those who love them”. 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.
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Team
Covers
Pediatric Psychosocial Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management
The 2nd Edition of the handbook, Pediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management, by Oxford Press, 2015 fills an important niche, as it provides practical hands-on information on many aspects of psychological and psychiatric aspects of pediatric oncology care. It is organized with sections addressing specific clinical questions ranging from talking with children and adolescents to educational planning, from pain management to palliative care and from psychiatric emergencies to medications for anxiety and depression in cancer patients. Written by 62 pediatric medical and psychosocial oncology experts from over 30 Institutions, the Quick Reference book is targeted towards pediatric oncology medical and nursing staff, but we anticipate that it will be a valuable teaching tool for psychosocial staff as well. We hope that hematology-oncology fellows and other multidisciplinary trainees will find this book useful in their care of children with cancer.
Lori S. Wiener, Maryland Pao, Anne E. Kazak, Mary Jo Kupst, Andrea Farkas Patenaude and Robert J. Arceci (Eds). Quick Reference for Pediatric Oncology Clinicians: The Psychiatric and Psychological Dimensions of Cancer Symptom Management, 2nd Edition. Oxford University Press, 2015.
Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue
Pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders and developed evidence-based standards for pediatric psychosocial care. Given the breadth of research evidence and traditions of clinical care, 15
standards were derived. Each standard is based on a systematic review of relevant literature and used the AGREE II process to evaluate the quality of the evidence. This article describes the methods used to develop the standards and introduces the 15 articles
included in this special issue. Established standards help ensure that all children with cancer and their families receive essential psychosocial care
Pediatr Blood Cancer 2015;62:S419–S424
Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care
This textbook walks clinicians through the psychosocial issues and challenges faced by children and adolescents with cancer and their families. Through a developmental lens, the text provides guidance and resources that will enable clinicians to understand the physical and emotional impact of the disease from diagnosis onwards, to work with families in distress, and to diagnose and treat a range of behavioral, psychological, and psychiatric issues. The book also addresses the burgeoning fields of social media, complementary therapies, palliative care, and survivorship. Among the variety of useful resources supplied are assessment tools, websites, and additional reading materials.
A.N. Abrams, A.C. Muriel, L. Wiener (Eds.) Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care. New York, NY, Springer International Publishing, 2016, 409 pp
The Gift of Gerbert's Feathers
The children's book, The Gift of Gerbert's Feathers, is a story about a young gosling, Gerbert, experiencing serious illness. Gerbert knows that someday, he won't be able to keep up with his family and friends. Gerbert prepares for his final migration and shows his family and friends that he will always be with them.
Meaghann Weaver, MD, MPH, FAAP, and Lori Wiener, PhD, DCSW. Illustrated by Mikki Butterley
Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease
This Special Issue of the journal Children constitutes an opportune moment to reflect on the psychosocial needs of children living with rare diseases and of their families. As medical advances, treatments, and developments have enabled many of these children to survive infancy and to live into adulthood, progress brings with it concerns and opportunities to enhance the psychosocial quality of life of children living with rare diseases, and of their families. The 13 papers within the Special Issue reflects the current state of psychosocial research, including ideas about future research and practice.
Children 2022, 9(7), 1099; https://doi.org/10.3390/children9071099
Resources
Resources
Pediatric Oncology Branch: Psychosocial Support & Research Program Resources - This page provides a number of educational and therapeutic materials to help the children we serve learn about their condition and cope with the challenges they might face as a result of their illness.