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

Abstract

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.

Conflict of interest statement

CONFLICT OF INTEREST

None of the authors has a financial or other conflict of interest to disclose. We have had full control of all data related to this study and have agreed to allow The Journal of Supportive Care in Cancer to review the data if requested.

Figures

Figure 1. Distribution of instrument scores among non-bereaved and bereaved parents, stratified by clinical impressions of parent “resilience”

Panel A: CDRISC-10 (Connor-Davidson 10-item resilience scale); higher score suggests greater personal resiliency). Panel B: Kessler-6 (Kessler-6 general psychological distress scale); higher score suggests higher distress. Panel C: PTGI (Post-traumatic growth inventory); higher score suggests greater post-traumatic growth.

Figure 1. Distribution of instrument scores among non-bereaved and bereaved parents, stratified by clinical impressions of parent “resilience”

Panel A: CDRISC-10 (Connor-Davidson 10-item resilience scale); higher score suggests greater personal resiliency). Panel B: Kessler-6 (Kessler-6 general psychological distress scale); higher score suggests higher distress. Panel C: PTGI (Post-traumatic growth inventory); higher score suggests greater post-traumatic growth.

Figure 2. Person-level alignment of instrument scores with clinical impressions of resilience

Percent of individual parents whose scores aligned with clinical assessments of “resilience.” Alignment defined as follows: (1) CDRISC (Connor Davidson 10-item Resilience Scale): “resilient” and score>25%-ile, “not-resilient” and score =7); (3) PTGI (Post-traumatic Growth Inventory): “resilient” and score>25%-ile; “not-resilient” and score