Social and family challenges of having a child diagnosed with phelan-mcdermid syndrome: a qualitative study of parents’ experiences

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SUMMARY

    Parents of children with other RD have highlighted the constant concern for their children and people`s lack of understanding. Previous studies among parents of children with RD showed how their health status worsens when they experience limitations for participating in social relationships and feelings of isolation and loneliness. School care for children with special educational needs was regulated in Spain in 1995, and the parents` free choice between a standard school or a special education center was established. The experience of having children diagnosed with PMS or an RD is highly individual, and . . .

     

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