Stress and Coping in Parents of Children with Medical Complexity

Abstract

According to the National Survey of Children with Special Health Care Needs, 13.6 million children in the United States (one in four households) are diagnosed with medical complexity. Accompanying children’s multifaceted illnesses may be associated complications that adversely affect parents’ lives. Recent findings demonstrate parents of children with medical complexity (CMC) have depression, anxiety, poor quality of life and worse mental and physical health than parents of children without medical complexity. This mixed-methods study explored parents’ perceptions of frequency and difficulty of stressful events, described types of coping strategies reported and investigated potential associations with parental or child characteristics while caring for their CMC. Cross-sectional surveys were conducted, and one-on-one semi-structured interviews were used to examine the impact of caring for their CMC. Results of the Pediatric Inventory of Parents-Short Form demonstrated parental perceptions of high frequency and difficulty of stressful events in their caregiving. Results of the Brief-Cope showed that Caucasians and those with public insurance used significantly higher dysfunctional coping strategies than participants with other ethnic backgrounds (p=.036). Parents with public insurance also had a statistically significant association with problem-based coping (p=.036). Qualitative data analysis revealed overarching themes such as navigating the health care experience and interactions, emotions and cognition, and coping strategies. Knowledge obtained from this study establishes feasibility of recruiting this vulnerable population and provides a foundation to build future supportive interventions for parents of children with medical complexity.