Disclosure of Duchenne muscular dystrophy after newborn screening.

Disclosure of Duchenne muscular dystrophy after newborn screening Table 1 Modelfor structured disclosure Phase Action and goals Preliminary groundworkLiason with primary health care team: to establish positive relationship with professionals in personal contact with family Meeting with nominated local paediatrician: to ensure that clinician is familiar with the protocol, and that (s)he is given details about the family Key issue: Maximise primary health care team involvement Minimise family distress by shaping the pattern ofdisclosure to their situation 2. The main encounter Inform families of their situation Take venous sample for creatine kinase Give results to family Key issues: Maximise information and choices forfamilies 3. Follow up Identification of key worker at primary health care level Key issue: Provide on-going support that isfamily specific