Patients, Caregivers, and Illness Uncertainty: Influences on Coping and Quality of Life

Abstract

Illness uncertainty is defined as “the inability of a person to determine the meaning of illness-related events”. Patients’ and caregivers’ individual experiences of illness uncertainty adversely affect their quality of life (QOL). The relationship between uncertainty and QOL have been examined extensively for either the patient or caregiver, but not among the patient-caregiver dyads. This three-paper dissertation fills gaps in the literature by examining the independent and interdependent relationships between illness uncertainty and QOL using the patient-caregiver dyad as a unit of analysis. The first paper presented a systematic review and meta-analysis of 21 articles that reported correlates of illness uncertainty in patients with cancer and caregivers. Notable effect sizes were observed in the correlations between illness uncertainty and social support, QOL, depression, and anxiety among patients with cancer. Insufficient data precluded examining the effect size of correlates of illness uncertainty among caregivers. The second paper using the actor -partner interdependence model, examined the independent and interdependent relationships between illness uncertainty and QOL among patients with advanced cancer and caregivers and assessed whether these relationships differed according to the patient-caregiver relationship and the type of cancer. Results demonstrated that patients’ and caregivers’ illness uncertainty was negatively associated with their own QOL. Patients’ illness uncertainty was negatively associated with caregivers’ QOL. These independent and interdependent relationships between illness uncertainty and QOL did not differ by patient-caregiver relationship, but did differ by type of cancer. The third paper using actor-partner interdependence mediation model, examined independent and interdependent relationships among patients’ and family caregivers’ illness uncertainty, coping, and QOL. Significant actor and partner effects were present: each person’s illness uncertainty and coping were significantly associated with their own QOL; caregivers’ illness uncertainty was positively associated with patients’ avoidant coping. The mediation effects of active and avoidant coping on the relationships between illness uncertainty and QOL among patients and caregivers were partially verified. Collectively, the findings emphasized the need to support patients and caregivers as one unit of care and underscore the potential value of targeting family-oriented interventions to enhance QOL for patients and caregivers as they manage the stress of cancer.Doctor of Philosoph

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