Sickle Cell Disease (SCD) is a genetic disorder that affects approximately 1 out of every 600 African-American newborns (NHLBI, 2006). SCD and its associated symptoms can have widespread impact on both the psychological functioning of the individual diagnosed with the illness and their families. The purpose of this study was to apply the illness intrusiveness framework to better understand the relations among vaso-occlusive pain crises (VOC), child age, pediatric health related quality of life (QOL), and parental psychosocial adjustment. Participants included 103 parent-child dyads. Parents completed a background form, the Brief Symptom Inventory-18, and the Illness Intrusiveness Rating Scale. Children completed the Pediatric Quality of Life Inventory. Results revealed that experiencing a greater frequency of VOC’s was related to decrements in QOL across domains. However, this relation was not mediated by parental perceived illness intrusiveness. Further, results revealed that the effect of frequency of vaso-occlusive pain crises in children with SCD on parental psychosocial maladjustment is mediated by parental illness intrusiveness, which is contingent upon child age.

Parenting is a primary role for many young breast cancer survivors and the combined effect of parenting while coping with this disease can be problematic for many of them. Despite this, little is known about the impact of parenting on the well-being of young breast cancer survivors. This thesis, comprising two studies in article format, explores this question. In the first study, we identified elements of well-being that are salient for all young women with breast cancer, and which also captured some of the unique challenges associated with parenting as a survivor. Using factor analysis techniques, we determined how these elements interrelated in separate groups of young survivors with children and without, and identified differences between the two groups based on the patterns observed. We found that the interrelationship among elements of well-being varied between these two groups: psychological distress (representing mental health and perceived stress), illness intrusiveness, and fear of cancer recurrence were found to co-occur more frequently in mothers than in young survivors without children, thus compromising their well-being. Our second study had two objectives. The first part examined differences in perceived stress, illness intrusiveness, and fear of cancer recurrence between young breast cancer survivors with and without children in two separate timeframes (0-5 and 5-15 years since diagnosis). The second part identified predictors for these elements of well-being in young mothers exclusively. Compared to survivors without children, young mothers reported higher levels of fear of cancer recurrence and illness intrusiveness in intimate life domains during both timeframes, suggesting that disruptions in these areas persist over time. Part two revealed that mothers with adolescent children and high levels of parenting stress were most likely to report perceived stress and illness intrusiveness. A mother’s age and the time since her diagnosis predicted fear of cancer recurrence and illness intrusiveness, respectively. Results from this thesis indicate that young mothers with breast cancer need screening and interventions to manage psychological distress, fear of cancer recurrence, and illness intrusiveness, particularly in intimate life domains. This thesis also identifies the most vulnerable groups of mothers and has important implications for future research.

Parenting is a primary role for many young breast cancer survivors and the combined effect of parenting while coping with this disease can be problematic for many of them. Despite this, little is known about the impact of parenting on the well-being of young breast cancer survivors. This thesis, comprising two studies in article format, explores this question. In the first study, we identified elements of well-being that are salient for all young women with breast cancer, and which also captured some of the unique challenges associated with parenting as a survivor. Using factor analysis techniques, we determined how these elements interrelated in separate groups of young survivors with children and without, and identified differences between the two groups based on the patterns observed. We found that the interrelationship among elements of well-being varied between these two groups: psychological distress (representing mental health and perceived stress), illness intrusiveness, and fear of cancer recurrence were found to co-occur more frequently in mothers than in young survivors without children, thus compromising their well-being. Our second study had two objectives. The first part examined differences in perceived stress, illness intrusiveness, and fear of cancer recurrence between young breast cancer survivors with and without children in two separate timeframes (0-5 and 5-15 years since diagnosis). The second part identified predictors for these elements of well-being in young mothers exclusively. Compared to survivors without children, young mothers reported higher levels of fear of cancer recurrence and illness intrusiveness in intimate life domains during both timeframes, suggesting that disruptions in these areas persist over time. Part two revealed that mothers with adolescent children and high levels of parenting stress were most likely to report perceived stress and illness intrusiveness. A mother’s age and the time since her diagnosis predicted fear of cancer recurrence and illness intrusiveness, respectively. Results from this thesis indicate that young mothers with breast cancer need screening and interventions to manage psychological distress, fear of cancer recurrence, and illness intrusiveness, particularly in intimate life domains. This thesis also identifies the most vulnerable groups of mothers and has important implications for future research.