| Summary: | PURPOSE - While survival rates for pediatric cancer have dramatically improved, survivorship comes with its own stressors for this population and (especially) their caregivers, the most salient of which may be uncertainty. Answering a strong demand for modelling research, this study assessed the impact of numerous risk and resilience factors on caregiver emotional adjustment in the context of Mishel’s ‘uncertainty in illness’ (MUIT) framework. Of particular interest was examining the role of positive psychology variables.
METHODS - One-hundred fifty-six caregivers of pediatric cancer patients/survivors were recruited. The sample was evenly divided across ‘on’/‘off’ treatment groups and ‘urban’/‘rural’ groups. Forty adolescent patients/survivors also participated, and 41 on-treatment caregivers were re-assessed longitudinally on some baseline questionnaires. Questionnaires sampled socio-demographic and cancer-specific variables, positive and negative thinking, school and family needs, and emotional adjustment.
RESULTS - SEM analyses identified a version of the MUIT applicable to these caregivers in which hope, optimism, and benefit finding figured prominently. Hope was a strong predictor of positive and negative outcomes, across baseline and six months’ follow-up, and it (along with perceived mastery and threat) was also a significant mediating variable. In descriptive analyses, school and family needs (especially medically-related) were considered important but often unmet. Surprisingly, proportion of met needs did not vary across urban/rural subgroups, and having needs met (broadly speaking) did not significantly predict any outcome variable. Adolescents did not report any areas of struggle. While caregivers of newly diagnosed patients reported elevated distress, this subsided regardless of treatment status or urban/rural status. Frequent levels of benefit finding were reported by caregivers and teens, and benefit finding significantly predicted hope. Explained variance for most caregiver outcome variables averaged 60%, with the exception of benefit finding (33%).
DISCUSSION - This is the first study to explore a pediatric cancer caregiving model of emotional adjustment incorporating the roles of uncertainty, hope and benefit finding. The significant role of positive psychology variables here is suspected to reflect the ‘buffering capacity’ of frequent positive affect. With this improved understanding of caregiver emotional adjustment, we are in a better position to design screening and intervention efforts for this population.
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