Pilot Study of Educational Interventions in Pediatric Hematopoietic Stem Cell Donors to Increase Donation and Transplantation Procedure Knowledge
This study was designed to assess sibling stem cell donors’ understanding of transplant procedures and to learn if certain educational interventions impact their knowledge and anxiety prior to donating their stem cells. The study also helps to identify donors who may require additional preparation prior to stem cell collection.
An Exploratory Study of the Use of Five Wishes as a Tool for Advanced Care Planning in Adolescents/Young Adults with High Risk Cancer and HIV Disease
The first phase of this study was designed to determine if adolescents and young adults with advanced cancer or HIV disease feel that an advance care planning document is useful in addressing end of life issues, as well as to determine if existing documents meet the unique developmental and end of life needs of adolescents and young adults. The study is now in the 2nd phase where participants (ages 16-30) review two documents, Five Wishes and a modified age appropriate advance care planning tool and are asked to comment on items that they feel are most and least helpful and to help determine which document is most appropriate for others their age.
The Use of a Distress Thermometer in a Pediatric Research Setting: An Exploratory, Pilot Study
This study examines the feasibility and validity of a brief screening instrument (distress thermometer) designed to assess the presence of psychological distress in children and adolescents with medical Illnesses.
Understanding the Psychosocial Needs of Parents Who Have Lost a Child to Cancer
This study is open to parents whose child was treated at Memorial Sloan Kettering Cancer Center or NCI. The study is designed to acquire a comprehensive understanding of the unique bereavement experience, intervention preferences, and barriers to psychosocial service use that parents who lose a child to cancer face and to explore whether discussion about autopsy is acceptable, and if so, the most acceptable timing for this discussion and what information is most important to be shared. Findings from this study will be used to develop a Meaning-Centered Grief Intervention.
Pediatric Amputation: The Experience of a Pediatric Amputee in Preparation for Surgery
This is a pilot study designed to gather qualitative information from older adolescents and adults who experienced an amputation in childhood. Areas of interest include the level of involvement in deciding to pursue amputation, the quantity and quality of preparation pre- and post- limb removal, as well as thoughts pertaining to helpful pre-surgical interventions. Outcomes of this study will be used to improve emotional preparation for pediatric amputation.
Reducing Social Isolation When Medical isolation is Required
This study was designed to assess caregiver understanding of reasons for isolation and isolation precautions and to develop interventions that can increase understanding and reduce loneliness, anxiety or emotional isolation for both patient and caregivers. Pilot data was utilized to develop new educational materials: What is Medical Isolation (A Pediatric Workbook); Medical Isolation: Information for Adolescents: and Medical Isolation and Your Child’s Emotions: What to Expect and How to Cope – A Guide for Caregivers.
Understanding the Influence of Childhood Cancer on the Parents’ Marital/Partner Relationship
This study was designed to explore whether the stress associated with having a child with cancer is perceived to impact the marital/partner relationship, and if so, which time points and events during the cancer trajectory is the relationship most stressed and/or strengthened.
Voicing My CHOiCES as a Tool for Advanced Care Planning in Young Adults with Metastatic, Recurrent, or Progressive Cancer
This study is being conducted to determine the helpfulness of Voicing My CHOiCES, and to determine if advanced care planning with young adults has psychosocial effects.