https://www.ncbi.nlm.nih.gov/pubmed/27673709

Bowden MR, Ee LC, Krishnan U, O'Loughlin EV, Hardikar W, Carmody D, Hainsworth C, Jermyn V, Lee MM, Sawyer J, Stormon M, Holmes K, Lemberg DA, Day AS, Paul C, Hazell P. J Pediatr Gastroenterol Nutr. 2017 Apr;64(4):528-532. doi: 10.1097/MPG.0000000000001404.

Abstract

OBJECTIVES:
Research is lacking into the emotional effects on families of serious chronic illness in infants. We examined the effect of the diagnosis of serious liver disease in infants upon parent psychological symptoms and family functioning. We hypothesized that parent psychological symptoms, family functioning, and father engagement will predict infant emotional outcomes.

METHODS:
Parents of infants recently diagnosed with serious liver disease completed validated questionnaires about parent stress, family function, impact of the illness on the family, and father engagement. The measures were repeated after 1 year, with the addition of the Child Behavior Checklist (CBCL).

RESULTS:
Parents of 37 infants participated. Parent stress and family functioning scores were not elevated. Parent psychological symptoms, family function, and father engagement did not predict infant outcome. For mothers, infant diagnosis other than biliary atresia, number of outpatient visits, and impact of the illness on the family explained 32% of the variation in CBCL (P = 0.001). For fathers, socioeconomic status, infant diagnosis other than biliary atresia, whether the infant had had a transplant, and impact of the illness on the family explained 44% of the variation in CBCL (P < 0.001).

CONCLUSIONS:
Parents and families appear to be resilient in coping with serious infant illness. Infant diagnosis other than biliary atresia and parental perceptions of high impact of the illness on the family are indicators of negative emotional outcomes for infants with serious liver disease. Psychosocial interventions for infants with chronic illness should target reducing the impact of illness on the family.