Mediators Affecting Family Function in Families of Children with Duchenne Muscular Dystrophy

Abstract

Most families of children with Duchenne muscular dystrophy (DMD) first receive professional information about the disease at the time of their child's diagnosis. Generally, as the families begin to build a supportive care system for their children, the parents will research DMD on their own or gather formal knowledge about the disease from professionals. However, gaining access to care is a major challenge because they often do not know how to ask the right questions. In particular, vulnerable populations may experience difficulties in assisting their child's emotional adjustment to the disability and use of available services. The purpose of this study was to test the possible effects of psychosocial mediators of parental health, family hardiness and family support on family function in relation to the age at diagnosis of children with DMD. One hundred and twenty‐six Taiwanese parents of children with DMD who are members of the Taiwan Muscular Dystrophy Association filled out questionnaires. Subjects received a phone call before and again within the first week after we mailed them a questionnaire, a stamped return‐addressed envelope, and a consent form. The questionnaires included the Family Hardiness Index, Family Assessment Device, Family APGAR, Duke Health Profile and demographic questions. Hierarchical multiple regressions were conducted to test whether family hardiness, parental health, or family support mediated or moderated the association between age at diagnosis and family function. Family hardiness positively mediated the association between age at diagnosis and family function. These findings may help the design of interventions to develop family hardiness in families of children with DMD.