Resiliency in Child-Caregiver Dyads and the Impact on Health Outcomes in Sickle Cell Disease

Abstract

Background/Objectives: Resiliency is critical in coping with stressors associated with chronic health diseases. Sickle cell disease (SCD) is a chronic blood disorder in which familial psychosocial functioning impacts disease outcomes. We hypothesized that caregiver perceived stress and resiliency are related to the resiliency of children with SCD and may influence SCD clinical outcomes. Methods: Child-caregiver dyads completed the Perceived Stress Scale (PSS-10), Connor Davidson-Resilience Scale (CD-RISC), and used a 1-5 Likert scale to rate the frequency of stressors they experience, including the COVID-19 pandemic. Results: Of the 55 child participants, 36% reported a history of stroke, 7% a bone marrow transplant, and 25% frequent (≥3) emergency room visits within last year. Dyad median resiliency scores (68.5 vs. 75.8) and stress scores (16.1 vs. 15.3) were similar and consistent with population studies. Child resiliency was not associated with child (r = -0.21, p = 0.12) or caregiver (r = -0.16, p = 0.26) perceived stress. Caregiver and child resiliencies had a significant positive correlation (r = 0.38, p = 0.0046) but no relationship across dyads with perceived stress scores. Children with one to two hospitalizations within the last year had significantly lower median resiliency scores compared with those who had experienced no hospitalizations (median 65 vs. 76, p = 0.0386), but displayed no relationship with genotype, history of stroke, or stem cell transplant. During the COVID-19 pandemic, both groups rated "worry about my/my child's sickle cell disease" as the most frequent psychosocial stressor. Conclusions: In a cross-sectional cohort study that explored the relationship between caregiver resiliency and child resiliency in SCD, we found that caregiver resiliency and child resiliency were strongly correlated, while child resiliency showed no significant association with perceived stress. Higher child resiliency scores were associated with fewer hospitalizations. The results indicate the need for interventions to increase both child and caregiver resiliency in SCD, as it may contribute to health outcomes in SCD. Further research is needed to explore cofounding factors influencing resiliency in children with SCD.

Keywords: COVID-19; resiliency; sickle cell disease; stress.

Figure 1

Recruitment and enrollment outcomes: Flow diagram of identified study participants. Inclusion criteria: ≥12 years old, English speaking, and active diagnosis of SCD. Exclusion criteria: child in foster care or sibling enrolled.

Figure 2

Resiliency and Perceived Stress Scores: (A,B) There is no association between child resiliency and child perceived stress (r = −0.21, p = 0.12) or caregiver perceived stress (r = −0.16, p = 0.26). (C,D) Caregiver resiliency was not associated with child perceived stress (r = −0.13, p = 0.36); however, caregiver stress was significantly correlated with caregiver resiliency (r = −0.58, p < 0.0001).

Figure 3

Child Resiliency Scores and Clinical Outcomes: (A) Children with one or more hospitalizations had significantly lower resiliency scores than those without hospitalizations within the last year (median 65 vs. 76, p = 0.0386). Differences in resiliency scores were not observed in other markers of clinical disease. * indicates p < 0.05 (B) Resiliency scores were not significantly different between more clinically severe genotypes (HbSS, HbSB0) and clinically mild genotypes (HbSC, HbSB+) (69 vs. 71.5, p = 0.80). (C) Resiliency scores were not significantly different (68.5 vs. 70, p = 0.97) between children who did or did not have a history of stroke. (D) Resiliency scores were not significantly different between children who had more frequent follow up (every 3 months or monthly) compared to those with less frequent follow up (yearly or every 6 months) (69.5 vs. 66, p = 0.79).

Figure 4

Caregiver Resiliency and Child Resiliency: (A) Caregiver resiliency and child resiliency are closely correlated (r = 0.38, p = 0.0046). (B) When caregivers were asked to score their child’s resiliency (caregiver for child), scores were closely correlated with their child’s self-reported resiliency score (r = 0.60, p < 0.0001).