High to severe levels of psychological distress are common among parents of children with advanced cancer, according to a study conducted at three children’s hospitals—Boston Children’s Hospital, Children’s Hospital of Philadelphia, and Seattle Children’s Hospital. The cohort study was embedded in a randomized clinical trial (Pediatric Quality of Life and Evaluation of Symptoms Technology [PediQUEST] study) and included 81 parents of children with advanced cancer.
More than 50% of parents reported high psychological distress and 16% met criteria for serious psychological distress, compared with 2% to 3% in the U.S. population. Parent perceptions of prognosis, goals of therapy, child symptoms/suffering, and financial hardship were associated with psychological distress.
“In multivariate analyses, average parent Kessler-6 Psychological Distress Scale scores were higher among parents who believed their child was suffering highly and who reported great economic hardship. Conversely, [psychological distress] was significantly lower among parents whose prognostic understanding was aligned with concrete goals of care,” the researchers reported. This is true even if parents understand that their child’s illness is incurable.
“Because a cancer diagnosis represents the potential death of a child and challenges a parent’s basic assumptions, the level of cognitive dissonance, and consequent [psychological distress], may be greater in this population. These results support the notion that early integration of palliative care strategies as a means of facilitating the alignment of parents’ prognostic understanding with concrete goals of care may ease their distress,” the authors wrote.
“Parent perception of child suffering was also related to their experience of [psychological distress],” the authors continued. “Parents may have greater emotional struggles when they feel that their child is unhappy or afraid. They may feel less knowledgeable or more helpless in the face of their child’s emotional symptoms than they would with other cancer-related somatic complaints and may feel more responsible for addressing psychological concerns. Likewise, a child’s emotional suffering may more strongly impair parental coping.”
Parental psychological distress “can ultimately affect patient and sibling psychological outcomes,” and alleviating the distress “may lead to more optimal patient and family health,” the authors noted. “Importantly, our findings suggest ways in which providers may ease parental [psychological distress] by exploring their views on prognosis and treatment goals, perceived child suffering, and economic hardship.” ■
Rosenberg A, et al: JAMA Pediatrics. April 1, 2013 (early release online).