Parent and Family Resonses to a Child Undergoing BMT During Transitions in Care
Heinze, Katherine E
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Background Pediatric blood and marrow transplantation (BMT) is an intense treatment reserved for life-threatening oncologic, hematologic, and immunologic illnesses of childhood. While BMT offers hope for cure, the intensity of the treatment and recovery period, and the associated burdens have been linked to sequelae such as decreased quality of life (QOL), emotional distress, and financial burdens. Even though pediatric BMT affects all family members, very little is known about the direct effects of BMT on the parents of BMT patients, and the resultant family impact. Self-management concepts have been identified by parents as important during their child’s BMT and recovery period, but parent and family self-management has not been explored in the pediatric BMT population. Purpose The specific aims of this study are to 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 at five time points during the first 12 months following BMT; 2) Examine the effect over time of complexity of condition and treatment, as measured by BMT complications, on parent impact, general heath, and QOL, and 3) Explore the family self-management experience of the transition from acute to chronic care following pediatric BMT. Method This study used an explanatory sequential mixed methods design. The quantitative portion included a secondary analysis of an existing data set, and the qualitative portion consisted of semi-structured family as group interviews. The qualitative portion of this study was guided by the human science phenomenology approach described by Van Manen. The Individual and Family Self-Management Theory guided this study. Results The quantitative analysis included 363 parents of pediatric BMT patients. The Parent Impact Scale of the Child Health Ratings Inventories (CHRIs) was found to have a single factor structure. In the first three months after BMT, Parent Impact was significantly worse in the presence of aGVHD ≥ grade 2, worse organ toxicity, and systemic infection. From three months to one year, Parent Impact was significantly worse with the presence of systemic infection. A year after BMT, one-third of parents reported taking at least one day off per week from work/cutting back on usual activities. Longitudinally, parent QOL was significantly better among partnered parents, Hispanic parents, parents with fewer children, parents with lower Parent Impact, and parents of children with better organ function. Parent General Health was significantly better among parents with higher educational attainment, parents with lower Parent Impact, parents of children with non-malignant diagnoses, and parents of children with worse organ toxicity. Thirteen families participated in the family as group interviews including 11 mothers, 5 fathers, 4 BMT patients, and 4 siblings. Major themes included Making a Plan, Taking Care of Basic Needs, and Managing Emotional Burdens. Even though the circumstances of BMT were similar among different families, families described using vastly different self-management strategies to survive the BMT period. Conclusions This study provided important information about the self-management of parents and families during pediatric BMT. In the quantitative analysis parents reported taking time off work/cutting back on usual activities throughout the first year after BMT. In the qualitative interviews, parents described the stress of making work arrangements, and the resulting financial strain. The findings that family characteristics, such as the number of siblings and partner status of the parents; as well as patient characteristics, such as infection and organ toxicity are related to parent QOL and general health provide further evidence that parent and child outcomes are linked. This information is also critical for the future formation of interventions designed to support families through pediatric BMT. Furthermore, knowing these factors may help clinicians to identify families most as risk for negative sequelae. Future research is needed to study the stability of qualitative concepts over time, and develop family-centered interventions designed to help families achieve their self-management goals during pediatric BMT.