title: [Psychological support for patients with muscular dystrophy].
abstract: The life expectancy of patients with muscular dystrophy has increased in recent while their challenges of activity of daily living persist. Therefore, psychological support is crucial for patients with muscular dystrophy and their family members and caregivers. We have carried out several studies to explore appropriate psychological support for these patients. Individual counseling was effective to support the mental health of patients with muscular dystrophy; however counseling settings should be changed adapted to the physical conditions of patients. A short-term support group for family members was helpful for sharing information and concerns about child rearing. A case conference including physicians, nurses, caseworkers and clinical psychologists was held concerning a decreased patient. Combined case conferences with medical staff reduce psychological stress for staff and prevent from burnout syndrome. Research on how to explain the illness to boys with muscular dystrophy started in 2009. Interviews with adult patients revealed that they had wanted to know about their illness while they were young children. Half of their parents had hoped that their children would recognize the diagnosis by seeing friends with muscular dystrophy during hospitalization. Some of the parents explained the diagnosis to their children directly during childhood, hoping to battle the illness together. In 2010, we studied the attitudes of pediatric neurologists toward explaining the muscular dystrophy diagnosis to children. Seventy percent of respondents answered that patients should be told about their illness. Many of them desired the opportunity to be trained in appropriate ways to tell children about the diagnosis.
authors: Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan.
authors: Osamu
authors: O
authors: Imura
mesh_terms: D000328:Adult; D002648:Child; D003376:Counseling; D005190:Family / Q000523:psychology; D006801:Humans; D007406:Interview, Psychological; D008297:Male; D008503:Medical Staff / Q000523:psychology; D008875:Middle Aged; D009136:Muscular Dystrophies / Q000523:psychology*; D010353:Patient Education as Topic; D012944:Social Support; D055815:Young Adult