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End-of-life decision-making for children with severe developmental disabilities

Table 1 (Continued )

Table 1 (Continued ) Source Study participants, n Nationality Patients, n Age Sex Underlying diagnosis of patients, (n) Decision Factors described d Timing of data collection Study design (data collection; analysis) Relevance/ Credibility 240 Reilly et al. (2010)— Intellectual & Developmental Disabilities Sharman et al. (2005)— Pediatric Critical Care Medicine Mothers, n =6 Fathers, n =6 (all couples) Mothers, n =9 Fathers, n =5 UK n =6 Down syndrome with Decision-making All children died Age at death: 2–18 y Sex: not specified congenital heart condition regarding medical treatment, including heart surgery US n =10 Age: 3 mo–14 y Sex: 3 girls and 7 boys a PICU = Paediatric Intensive Care Unit. b UK = United Kingdom. c US = United States. d E-I = Experienced Involvement; P-I = Preferred Involvement; G-F = Guiding Factors. Malignancy (2), respiratory failure (2), neurologic condition (5), metabolic condition (1) Limit or withdraw life support E-I G-F E-I P-I G-F Retrospective (8–19 y after the death of the child) Prospective Qualitative study— (semi-structured interviews; interpretative phenomenological approach) Qualitative study— (in-depth interviews; not specified) High/high High/high I.H. Zaal-Schuller et al. / Research in Developmental Disabilities 49–50 (2016) 235–246