Promoting Treatment Adherence in Child and Adolescent CancerPrincipal Investigator: Ernest Katz, Ph.D. This study is a multi-site, randomized clinical trial, funded by the National Cancer Institute. This study will evaluate a family-centered, problem solving intervention to promote adherence to oral medication among children and adolescents with Acute Lymphoblastic Leukemia (ALL) or Lymphoblastic Lymphoma (LL) during maintenance chemotherapy. It is hypothesized that the family-centered problem solving intervention will result in improved adherence to prescribed oral medication among children and adolescents with ALL or LL over control group subjects. This study will identify effective strategies to promote adherence among children and adolescents that may potentially lead to improved medical outcomes for these adolescents. Facilitating Parental Adaptation to Pediatric Bone Marrow Transplantation The Parent Social-Cognitive Processing Intervention Program, or P-SCIP Trial, is a randomized, clinical trial with mothers of children undergoing hematopoietic stem cell transplantation. This NCI-funded study uses cognitive and social processing theory to identify key variables which contribute to distress reactions in parent caregivers. The study will evaluate the relative impact of the experimental P-SCIP intervention versus BPC (Best-recommended Psychosocial Care) on parental psychological distress, both short- and long-term. It is hypothesized that our novel intervention approach will reduce parental distress during and after transplant and will prevent long-term, persistent, traumatic stress behaviors. Fathers as Primary Care Takers of Children with Cancer This study is about understanding fathers' experience when their children have a major disease or health impairment. Often, we hear about what mothers go through, but know a lot less about fathers. We know even less about what it is like to be a father who does most of the caretaking for a sick child. The study’s research questions are: (1) What are the factors that contribute to a father becoming the primary caretaker of a child with a life-threatening or chronic illness? (2) How does the experience of being the primary caretaker of a child with a life-threatening or chronic illness impact a father’s roles, beliefs, and overall functioning? Healing Effects of the Built Environment Increasing research documents a connection between a hospital’s architecture/design (i.e., the “built environment”), and a number of health-related quality of life outcomes including physical, psychosocial, and satisfaction variables. Most of the research in this developing field has been conducted in adult settings, with sparse research in pediatric environments. This study investigates the effects of the hospital built environment on pediatric hematology-oncology patients, their parents, and their nursing staff, specifically investigating the function of environmental satisfaction with respect to psychosocial functioning in addition to healthcare satisfaction and co-worker satisfaction for members of the nursing staff. In order to learn more about our growing Latino population, study measures were available in English in Spanish, and Latino participants were asked to complete and acculturation scale to learn whether relationships between environmental variables and outcomes change with acculturation status. This study was funded by the NCI through a Ruth L. Kirschstein National Research Service Award. Effects of Problem-Solving Skills Training on Latina Mothers of Children Newly Diagnosed with Cancer Latinos are one of the fastest growing cultural minority groups in the United States. In a study investigating the effectiveness of a problem-solving skills training intervention for mothers of children newly diagnosed with cancer, researchers found that Spanish-speaking mothers were significantly more distressed and scored lower on problem-solving measures than their English-speaking counterparts. Furthermore, post-tests showed that Spanish-speaking mothers who received the problem-solving intervention evidenced larger benefit compared with those who had completed the intervention in English. This goal of this study is to learn more about these Spanish-speaking mothers, looking more closely at the impact of the problem-solving intervention within the Spanish-speaking group, and the roles that acculturation and familism play with respect to psychosocial adjustment and problem-solving skills. This research is part of a larger study that was originally funded by the NCI. Measuring the Impact of Ronald McDonald Houses and Camp Ronald McDonald for Good Times Family Camps The primary purpose of this study is to improve the health and well-being of children and their families who are served through the Ronald McDonald Houses and Camp Ronald McDonald for Good Times. Specifically, this project proposes to (1) identify the most important impacts the Ronald McDonald Houses and Family Camp have on families, children and our hospital partners, (2) measure how well each of the Ronald McDonald Houses in Southern California and Family Camp are performing against these impact areas, (3) improve the programs and services we offer to best meet the needs of the families, children and hospitals we serve based on direct feedback and (4) increase the number of children transitioning from Family Camp to Youth Camp at Camp Ronald McDonald for Good Times. This research is funded by UniHealth. PROMIS Study (Patient-Reported Outcomes Measurement Information System) PROMIS aims to develop ways to measure patient-reported symptoms, such as pain and fatigue, and aspects of health-related quality of life across a wide variety of chronic diseases and conditions. The NIH and the NCI have supported the development and testing of PROMIS to provide NIH-funded researchers access to standardized, efficient, valid, and precise measures of self-reported symptoms and health-related quality of life (e.g., physical function, pain, fatigue, depression, anxiety, anger, and social well-being). The PROMIS Supplement permits further development of symptom and quality of life domains and the testing of this dynamic system (www.NIHpromis.org ) in cancer populations. The HOPE Program is participating in the PROMIS Supplement to expand testing of the pediatrics PROMIS tool. |