Ameliorating the Psychological Impact of Chronic Physical Disease on the Child and Family

Mary Jo Kupst, PHD


J Pediatr Psychol. 2019;44(7):777-778. 

In a review describing the impact on the family of a child's chronic disease or condition Friedrich (1977) provided a representative picture of the pediatric psychology landscape in the 60's and 70's. Viewed in 2019, this article appears as a compendium of small, disparate, often inadequately designed studies and narratives of "handicapped" children and their families. However, it is important to understand the context in which these studies occurred as the field of pediatric psychology was emerging.

Fifty years ago, the prognosis of many pediatric conditions, for example, congenital heart disease, spina bifida, cystic fibrosis, cancer, was poor. In pediatric acute lymphocytic leukemia, for example, the 5-year survival rate in the 1960's was around 10%, in the late 70's 57% as opposed to current figures of over 90%. In many of these conditions, families were faced with a serious disease and a potentially fatal outcome. Thus, it was not surprising that children and families experienced significant distress, anxiety, depression, behavioral problems, or marital conflict. Clinically, the role of psychological professionals was to help them with anticipatory grief as well as bereavement (Binger et al., 1969). In most hospitals, parents were limited in the time they could spend with their children resulting in separation anxiety, uncertainty, and fear surrounding the diagnosis and treatment. Children's anxiety was heightened by isolation as well as silence about their condition. The importance of open communication with the child and family was only recognized and advocated by a few pioneering researchers, for example, Farkas (later Patenaude), 1974; Spinetta and Maloney (1978).

These studies were typically based on clinical observations of families in crisis. While they did not have the benefit of current assessment techniques, larger sample sizes, control or comparison groups, or longitudinal follow-up, they provided an in-depth description of family adaptation to the "acute trauma" of a serious pediatric condition. Many of these articles presented a negative picture of the child and family's (usually the mother's) functioning. However, Friedrich acknowledged that families were not doomed to dysfunction and recommended inclusion of strengths as well as weaknesses. In fact, research in the same era (Futterman & Hoffman, 1973; Tavormina, Kastner, Slater, & Watt, 1976) that allowed for the assessment of positive as well as negative outcomes found that, even in the face of serious trauma and loss, families could adapt and functioning remarkably well over time. It has been interesting to see over the years that the percentage of children with medical conditions and their parents who have exhibited serious and lasting psychopathology is relatively low (20–30% is a common range across many studies), resulting in more focus on risk assessment and preventive interventions. (Herzer et al., 2010; Kazak et al., 2012).

Because few studies could obtain a sufficiently large number of children in a given medical condition, combining studies of various conditions in this review allowed for examination of commonalities across conditions, a noncategorical approach (Stein & Jessop, 1982), but the results across conditions were not very consistent or comparable. The grouping of medical diagnoses, developmental, and physical disabilities with different etiology and demand characteristics made generalization difficult. As the field developed, these conditions have often been considered separately. After the 1970's, articles in the Journal of Pediatric Psychology devoted to developmental or physical disabilities were no longer as common, with increased focus on general and specific chronic medical conditions (Canter, Amaro, Noser, & Roberts, 2018). Given the wealth of psychosocial knowledge gained over the years about pediatric diseases or conditions, research questions include assessment of coping tasks and risk/resilience factors specific to those conditions (Compas, Jaser, Dunn, & Rodriguez, 2012; Herzer et al., 2010).

Contemporary articles had described clinical approaches to helping families, but this was one of the first to summarize studies of family factors in pediatric conditions. While the review lacked an overarching theoretical perspective, Friedrich emphasized the role of family therapy, notably family systems therapy, suggesting an assessment methodology to measure progress. He also saw the need to go beyond description of functioning to discover factors that predicted psychosocial functioning. This article presages some advances in psychological care that have occurred over the past 40 years, including the prevalence of child life professionals, parent and child groups and camps, and special education resources and the need for more work with fathers and siblings. Today many pediatric psychologists are embedded in medical divisions in hospitals or are otherwise active in pediatric research and care. We have come a long way over these 50 years, with improved systematic review approaches, theoretical perspectives, and methodological advances, such as improved research designs and analyses, building upon the work of early pioneers, and continuing to advance the field.