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Mary Jo Kupst, Commentary: Ameliorating the Psychological Impact of Chronic Physical Disease on the Child and Family, Journal of Pediatric Psychology, Volume 44, Issue 7, August 2019, Pages 777–778, https://doi.org/10.1093/jpepsy/jsz027
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Extract
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).
- anxiety
- congenital heart disease
- bereavement
- cancer
- cystic fibrosis
- separation anxiety disorder
- child psychology
- chronic disease
- disabled persons
- special education
- fatal outcome
- father
- fear
- generalization (psychology)
- leukemia, lymphocytic, acute, childhood
- psychopathology
- relationship - sibling
- spinal dysraphism
- survival rate
- wounds and injuries
- family psychotherapy
- family counseling
- protective factors
- mixed anxiety-depressive disorder
- coping behavior
- marital conflict
- behavioral problems
- family systems therapy
- watt
- physical disability
- anticipatory grief
- narrative discourse
- pediatric disorders