"I know it when I see it." The complexities of measuring resilience among parents of children with cancer

"I know it when I see it." The complexities of measuring resilience among parents of children with cancer

Rosenberg AR; Starks H; Jones BL

Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer

2014

PURPOSE: Promoting parent resilience may provide an opportunity to improve family-level survivorship after pediatric cancer; however, measuring resilience is challenging. METHODS: The "Understanding Resilience in Parents of Children with Cancer" was a cross-sectional, mixed-methods study of bereaved and non-bereaved parents. Surveys included the Connor-Davidson Resilience scale, the Kessler-6 psychological distress scale, the Post-Traumatic Growth Inventory, and an open-ended question regarding the ongoing impact of cancer. We conducted content analyses of open-ended responses and categorized our impressions as "resilient," "not resilient," or "unable to determine." "Resilience" was determined based on evidence of psychological growth, lack of distress, and parent-reported meaning/purpose. We compared consensus impressions with instrument scores to examine alignment. Analyses were stratified by bereavement status. RESULTS: Eighty-four (88 %) non-bereaved and 21 (88 %) bereaved parents provided written responses. Among non-bereaved, 53 (63 %) were considered resilient and 15 (18 %) were not. Among bereaved, 11 (52 %) were deemed resilient and 5 (24 %) were not. All others suggested a mixed or incomplete picture. Rater-determined "resilient" parents tended to have higher personal resources and lower psychological distress (p = <0.001-0.01). Non-bereaved "resilient" parents also had higher post-traumatic growth (p = 0.02). Person-level analyses demonstrated that only 50-62 % of parents had all three instrument scores aligned with our impressions of resilience. CONCLUSIONS: Despite multiple theories, measuring resilience is challenging. Our clinical impressions of resilience were aligned in 100 % of cases; however, instruments measuring potential markers of resilience were aligned in approximately half. Promoting resilience therefore requires understanding of multiple factors, including person-level perspectives, individual resources, processes of adaptation, and emotional well-being.

2014-10

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