A Systemic Approach to Pediatric Chronic Health Conditions: Why We Need to Address Parental Stress

Abstract

Chronic health conditions in childhood are on the rise (Van Cleave et al. 2010). Associated psychological distress is not uncommon. The child does not experience these difficulties in isolation, but rather sits at the center of a network of systems; the most pertinent of which is the family. Childhood distress in relation to the chronic condition has an intimate bidirectional relationship with family functioning; caregiver distress is a key contributing factor to child outcomes.

Parental suffering in relation to pediatric chronic conditions is likely to occur at three main time points. First, prior to the diagnosis, the family is likely to have struggled with managing the child’s ill health, and experienced disruption to idealized family life. Second, parents will experience a reaction to the diagnosis of the condition, which may include complex feelings of loss, guilt, fear and even shame. Third, parents will experience a period of adjustment, including challenges of condition management and supporting their child longer-term. It is unsurprising that high stress and burnout are consistently reported by parents of children with chronic conditions (Cousino and Hazen 2013). Parent distress predicts the child’s psychological adjustment and reduces the parent’s ability to effectively manage the condition (e.g. reduced vigilance and adherence) (Wood et al. 2015).