Pediatric hematopoietic stem cell transplantation (HSCT) is now considered standard therapy for many life-threatening hematologic and oncologic diseases and indications for its use have recently expanded to include previously untreatable inherited metabolic and mucopolysaccharide disorders. The inspiring success of this treatment as well as efforts to expand the indications for its use would not be possible without the informal parental caregivers who provide the highly technological, acute care required by the child for the first 6 months post discharge as well as the longer-term needs in the subsequent year. Very little has been written about the demands of maternal caregiving throughout the transplant trajectory. The purpose of this pilot study is to examine responses and long-term maternal adjustment of mothers providing acute care to their children throughout the HSCT transplant trajectory. A longitudinal, prospective, exploratory design will be conducted in the inpatient and outpatient setting of the Duke Pediatric Stem Cell Transplant Program. The sample will consist of 100 mothers of children with hematologic malignancies, solid tumors, bone marrow and immune system disorders, and inherited metabolic disorders. Beginning with 5 days pretransplant then at post transplant days 7, 21, 90, 180 and 360, maternal cognitive (stress appraisal, expectations of self & cognitive coping), affective (emotional impact) and physiologic (salivary cortisol) responses to caregiving will be examined as well as long term maternal adjustment (post traumatic stress response & post traumatic growth) at 360 days post transplant. Descriptive statistics and regression will be used for data analysis. The results of this study will inform the design of a larger study addressing parental responses and adjustment patterns during a child's HSCT and their relationship to the child's symptom distress as well as health and development outcomes. In general, this study represents an initial step in a program of research designed to identify particular populations of HSCT children and parents (e.g. low income respondents, single parents, those far from home) at risk of poorer outcomes, and to understand the mechanisms (affective, cognitive, and physiologic) accounting for these outcomes. Relevant findings will ultimately be used to develop and target interventions intended to improve physical and psychosocial outcomes for parental care- givers and their children undergoing HSCT. ? ? ?
