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Abstract
This article presents the findings of qualitative research exploring the psycho-social effects of corticosteroid use in pediatric hematology patients during continuation therapy for Acute Lymphoblastic Leukemia (ALL). The findings are from a 5-year longitudinal study that documented the experience of treatment for childhood leukemia and related disorders from the perspective of the child patient and their family from the point of diagnosis to 1 year post-treatment. To date, scant information on the serious emotional side-effects of corticosteroid administration for children with ALL during the continuation period is available. This is concerning in light of the many serious challenges corticosteroid use poses to families of children with ALL. For this group of parents, dealing with the impact of corticosteroids on their child was reported as the major and only treatment-related stress during the continuation period of treatment for ALL. The impact of these drugs, described in very negative terms, was considered exacerbated by the fact that during the continuation period they are repeatedly administered in 5-week cycles. Anger and aggression, both passive and in acts of physical violence, in combination with temper tantrums and uncontrollable behavior were major concerns. Under the influence of corticosteroids the children could be moody, grumpy, confused, emotionally labile, depressed, sullen and withdrawn. The children could quickly switch from one emotional state to another, such as from aggression to emotionality. They could experience trouble with sleeping and talk excessively. The parents outlined a range of positive strategies for coping with the difficult behavior. The authors make a number of recommendations aimed at assisting parents to deal with the impact of the administration of corticosteroids in continuation therapy, including increasing the awareness on the part of health care providers of the side-effects of these drugs and their impact on the child with ALL and their family; provision of information to families on the effects of corticosteroid use; and, ensuring that professional counseling assistance is available when required.