Over 2,600 children age 0-20 in the U.S. undergo blood and marrow transplant (BMT) each year. Survival depends upon the disease being treated, type of transplant, and complications, which may include life-threatening infections and graft vs. host disease (GVHD). BMT treatment is characterized by a prolonged hospitalization, followed by a required period of intensive outpatient follow up at the transplant center, before care is transitioned back to local providers and the child and parent eventually return home. The first 3-6 months of BMT treatment, which includes the period of transition from acute care in and near the hospital to chronic care upon returning home, has been cited as a highly stressful period by parents. Many studies have documented parents'distress (including anxiety, depression, and post-traumatic stress symptoms) during BMT, and parents of children who underwent BMT 2-16 years previously reported increased stress and anxiety, and decreased quality of life (QOL) compared to both population norms and parents of pediatric oncology patients who did not undergo BMT. These findings reveal a critical need to understand risk and protective factors for families undergoing BMT that will affect short and long-term physical and mental health. Little has been written about the process of parents'self-management (self-regulation) of their physical and emotional health during the period of transition from acute to chronic care. Even less has been written about the impact of this transition on the self-management of the family unit. This study will address these gaps by using multiple methods to examine the context, process, and outcomes of parent and family self-management in the first year after BMT. Quantitative data will be drawn from an available database of more than 400 BMT parents collected longitudinally over the first year following BMT. Qualitative participants will be purposively sampled from an academic pediatric BMT center to participate in family interviews.
The specific aims of the proposed study include: 1: Examine the relationship of family context (complexity of condition and treatment, physical and social environment, and parent and family characteristics) to parent self- regulation, QOL, and general health over the first 12 months following BMT;2: Examine the relationship over time of parent self-regulation, QOL, and general health to complexity of condition and treatment, as measured by BMT-related complications;and 3: Explore the family self-management experience of the transition from acute to chronic care following pediatric BMT. The proposed study will contribute to the existing science of pediatric BMT by increasing understanding of the relationship between risk and protective factors to QOL and health outcomes, and the family experience of the process of self-management in the transition from acute to chronic care. The proposed research and accompanying training plan will enable the applicant to begin her career as an independent scientist in pediatric oncology research.
Blood and marrow transplant (BMT) is the most intense treatment available for pediatric patients with cancer and other life-threatening diseases of childhood;while BMT offers patients and families hope of a lasting cure, it is also associated with short and long-term consequences such as infections, organ toxicity, and disruptions in normal family life, which cause BMT patients, their siblings, and their parents great distress both in the acute transplant phase (0-3 months), and thereafter. Very little is known about how these BMT factors and patient and family contextual factors (such as parent income and education) influence parents'and families'ability to use self-management to maintain health and quality of life. Therefore, the purpose of this study is to examine the relationships between the context, process, and outcomes of parent and family self-management in the first year following BMT.