Understanding psychological distress among pediatric cancer caregivers

Few studies have examined distress in caregivers of pediatric cancer patients. We evaluated the association of socioeconomic, demographic, and patient clinical factors on caregivers' self-reported psychological distress associated with having a child with cancer.

N = 366 pediatric cancer caregivers completed a self-administered questionnaire from July 2010 to July 2012. The Impact of Event Scale (IES), along with two subscales "intrusion" and "avoidance" measured caregiver cancer-specific distress, with higher scores indicating greater distress. Multivariable linear regression models were used to calculate coefficients (β) and 95 % confidence intervals (95 % CI) of IES by socioeconomic, demographic, and clinical factors.

Average caregiver IES score was 31.2 (standard deviation (SD) = 16.9, range 0-75). Mean intrusion score was 18.1 (SD 9.8, range 0-35) and avoidance score was 12.8 (SD 9.0, range 0-40). Caregivers with household incomes <$40,000 reported higher mean distress scores than those with incomes ranging from $40,000 to $79,999 (β = 4.45, 95 % CI 0.04-8.87, p = 0.05). Infrequently or never attending religious services, younger child age, and a diagnosis of AML were associated with higher intrusion (all p < 0.05). Caregivers with a child currently receiving therapy reported higher overall IES (β = 5.9, 95 % CI 2.15-9.7, p < 0.01) and intrusion (β = 4.1, 95 % CI 1.9-6.3, p < 0.001) scores compared to those off therapy (β = 3.13, 95 % CI 0.93-5.33, p < 0.01).

Our findings identify socioeconomic and clinical factors that influence psychological distress for caregivers of pediatric oncology patients. These findings underscore the importance of developing and testing interventions aimed at evaluating and addressing the psychosocial needs for high-risk caregivers in addition to those of patients.