Living beyond the sword of Damocles: The quality of life of long -term survivors of leukemia and lymphoma.

Abstract

The purpose of this study is to further our understanding of the positive and negative psychosocial aspects of cancer survivors' quality of life and factors that contribute to it at different points throughout the life span. Using both quantitative and qualitative methods, this project (1) describes the physical, psychological, social and spiritual/existential aspects of quality of life and life changes reported by 53 long-term survivors of leukemia and lymphoma, (2) identifies ways in which medical, demographic and psychosocial factors are associated with self-reported quality of life and life change, and (3) explores the extent to which life changes attributed to the cancer experience are associated with variation in quality of life outcomes. A major assumption investigated is the role of cognitive adaptation (i.e. meaning-making, cognitive appraisal, worrying) in understanding quality of life. Cognitive adaptation is viewed here as conditioning the effects of medical variables (age at diagnosis, physical after-effects, health status), demographic variables (age/life stage, gender, income) and psychosocial variables (social support) on quality of life. In spite of the existence of physical sequelae, most survivors reported positive changes and benefits in their lives which they attributed to their cancer experience. Survivors aged in their 20's and 30's were significantly more likely to report more positive changes attributable to their cancer than older survivors, Survivors who tended to report predominantly negative changes had significantly lower quality of life, Although reporting positive changes was not significantly related to overall quality of life nor with measures of quality of life in the physical, psychological and social domains, reporting positive change (1) did appear to condition the association between negative change and quality of life and (2) was significantly and positively associated with quality of life in the existential/spiritual domain. Findings suggest that a positive integration of the cancer experience is associated with identity transformation and one's sense of vulnerability. Young adult survivors are more likely to be engaging in identity transformation, and thus more likely to derive positive change from the experience. Psychosocial support interventions provide opportunities for survivors to acknowledge the cancer experience's potential for promoting positive integration and personal growth.