Parental Grief: A Need Unmet

Abstract

Five parents of children who had died from primary immunodeficiency diseases were included in a study of (1) distress level as determined by the Hudson General Contentment Scale and (2) coping strategies used to deal with the child's death. The latter were determined from interviews and participation in a therapy group and compared to the Weisman and Worden Scale. An attempt was made to test two hypotheses: (1) that the distress level of bereaved parents will be significantly greater than normal, and (2) that the relative effectiveness of coping strategies will vary inversely with the level of distress. The distress level appeared to be high for at least a year following the child's death, and then to normalize by about 3 years after the death. The second hypothesis was not able to be tested due to the variable time elapsed since the child's death in each case. All subjects were found to use some ineffective coping mechanisms, and none used the most effective ones. It was found that the grief of these parents may have been postponed and was much longer lasting than previously appreciated. A variety of stresses related to the death of the child and the limited ability of contemporary society to deal with such losses are thought to be responsible. Suggestions are made on how the health care team can more effectively support the family whose child has died.