Cancer Control Research5R03CA126401-02
Bishop, Michelle M.
FOR BETTER AND FOR WORSE: LATE EFFECTS OF CANCER AND BMT ON SPOUSE-CAREGIVERS
DESCRIPTION (provided by applicant): Spouse-caregivers are critical to the recovery and well-being of blood and marrow transplant (BMT) cancer survivors, yet few studies have examined the BMT spouse-caregiver experience, especially the late effects and life changes that result. Although the spouse-caregiver role can offer a degree of satisfaction, it also can exact a debilitating toll on emotional and physical health. Our previous study demonstrated high levels of depressive symptoms in some BMT spouse-caregivers that persisted many years after the BMT experience was over. Spouses reported less social support, more loneliness, and less posttraumatic growth than BMT survivors. Although it is not surprising that the BMT experience would have adverse effects on the quality of life of the spouse caregiver, it is not clear why these adverse effects would continue years after direct caregiving responsibilities have ended. In addition, it is unclear why the degree of reported positive change following BMT would differ so between survivors and spouses, especially when both report high (and comparable) levels of emotional disturbance from the experience. There are no published studies identifying the long-term loss and recovery themes of BMT spouses which could help to explain our previous findings. We will enroll 60 BMT spouse-caregivers (from a pool of 120) from 40 transplant centers in North America who participated in one of our previous studies. We will stratify the sample on gender and presence of children in the home. The study consists of two parts: (1) semi-structured telephone interviews with 8-10 participants from each stratified group, used to identify salient loss and recovery themes, followed by (2) four small telephone focus groups (two with five women and two with five men) to confirm and validate the loss and recovery themes and to evaluate a quantitative measure of cancer caregiver QOL or posttraumatic growth to determine the degree to which the measure adequately captures their long-term experience. We hypothesize (1) spouse-caregivers will identify both loss and recovery themes in all domains of life (physical, emotional, social, spiritual), (2) there will be issues identified in qualitative responses not represented in quantitative measures, and (3) we will find support for theoretical models of stress and coping and posttraumatic growth that personal and environmental resources and process variables (e.g., self disclosure, ability to integrate changes into life narrative) will be associated with themes. Data will be used to develop prevention/treatment programs for spouse-caregivers, and new measures, if indicated. Understanding the impact of cancer/treatment on family members, including the late effects, is one of the highest priority areas of public health emphases for NCI. Better understanding of the long-term experiences of BMT spouse-caregivers will help us to prevent adverse outcomes and promote positive adaption, health and well being, for both the sake of the spouse-caregiver and of the BMT survivor.