Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed

Abstract

The authors combined and analyzed parent data from two field studies examining family experiences in raising children who were both medically fragile and developmentally delayed or disabled to compare these families' experiences to published attributes of normalization. Normalization is usually considered a useful conceptual and coping strategy for families of children with chronic conditions, but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions, severely affecting how families organized and managed their daily lives, with the result that families did not fit currently established attributes of normalization. Instead, parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards.