Couples Coping with Li-Fraumeni Syndrome: A Mixed-Methods Study of Family Strengths

Abstract

Using mixed methodology involving qualitative and quantitative data, this dissertation fills gaps in knowledge regarding psychosocial implications for families living with the genetically-transmitted Li-Fraumeni cancer susceptibility syndrome, specifically targeting couple dyads. An initial review of the existing literature on couples coping with heritable cancer syndromes identified gaps in knowledge, and pointed to future directions for research in this area. The three papers that comprise this dissertation provide multiple perspectives on the levels of distress, coping styles, and social support patterns of couples in which one partner is at high risk of cancer. The first paper investigates spousal distress and coping styles in relation to cancer worry for individuals with Li-Fraumeni Syndrome, using quantitative data from one of the largest existing collections of Li-Fraumeni Syndrome cases. The second paper identifies couples’ coping and communication processes regarding cancer stressors, using semi-structured qualitative interviews of individuals with Li-Fraumeni Syndrome and their partners. The third paper utilizes a social network approach to illustrate shared patterns of emotional, tangible, and informational support that couples report accessing. The integrated findings from these three studies indicate that these subjects are low in general distress but high in cancer-specific worry. Couples cope with this worry by balancing multiple roles, exercising flexibility in family dynamics, and utilizing extensive social support networks. This research provides significant information that can aid in development of effective interventions for couples as they face their ongoing threat of cancer. Recommendations for clinical work with this population include an integrated blend of couple therapy, genetic counseling, and oncology practice that is sensitive to the unique needs of individuals with heritable cancer syndromes and their partners.