ABSTRACTFAMILY RESILIENCE FOLLOWING A DIAGNOSIS OF PEDIATRIC CANCER: PARENT EXPERIENCES OF SOCIAL SUPPORT, COPING, AND ADAPTATIONByDaniel R. Zomerlei This dissertation explores the family experience of pediatric cancer. The two separate studies comprising this dissertation work in tandem to present a picture of parent and family factors relating to coping and adjustment. The results of these studies contribute to our understanding of the significant resilience-promoting factors, and their relationship to one another, capable of engendering family resilience following the diagnosis of cancer in one’s child. Study One focuses on the parental experience of social support and its contribution to effective coping and adaption. Study Two incorporates each of the most relevant family factors of adaptation, and presents them in a model of family resilience. Study One is a qualitative study describing parents’ lived experiences of receiving social support from friends and family following the diagnosis of cancer in one of their children. In this study, I seek to understand the types of social support parents report being unhelpful and helpful to their coping and adaptation following the crisis of a pediatric cancer diagnosis. Seventeen parents, representing nine families were interviewed. In each interview I asked parents about the impact of the crisis of pediatric cancer on the family and how their social supports helped them cope and adjust to the diagnosis. A phenomenological approach was used to guide the data analysis and resulted in rich descriptions of the lived experiences of research participants. One theme of ineffective support and three guiding principles of effective social support emerged from the analysis. The results of Study One have important implications for individuals desiring to aid families coping and adjustment to pediatric cancer. This study brings to light the importance of intervening in communities to educate family, friends, and community members about effective social support. This study also reveals a need to provide more collaborative, long-term psychosocial care for families to better meet the chronic challenges of cancer treatment and recovery.Study Two examines factors related to family resilience, and their relationship to one another, following a pediatric cancer diagnosis. I use the grounded theory method to examine resilience processes in families following the diagnosis of pediatric cancer. Data were collected through in-depth interviews from seventeen parents representing nine families. The analysis revealed that family resilience results from the interaction of important pre-cancer experiences, parent factors, family relational dynamics, and extra-familial support. These aspects of resilience are presented in detail in the Natural Family Resilience Model for Pediatric Cancer. This study highlights the importance of recognizing the natural, inherent family strengths capable of helping families cope well with the adverse experience of pediatric cancer. However it also implicates the necessity of improved, routine evidenced-based assessment to better identify families whose natural strengths may not be successfully meeting the psychosocial challenges of cancer. Taken as a single body of work, these studies suggest the importance for clinical interventions to begin with evidenced-based assessment, consider the long-term needs of the family, to be conducted collaboratively between hospital and community health professionals, and to be family-based. Also, interventions can target community resources as a primary way of improving the effectiveness of social support offered to families. The two studies also help to advance the understanding of how resilience occurs in the family. Family resilience is more than risk and protective factors. Instead, it is a natural, dynamic family process all families are capable of.
Read
