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机译:"It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease
Mt Royal Univ, Sch Nursing & Midwifery, Fac Hlth Community & Educ, 4825 Mt Royal Gate SW, Calgary, AB T3E 6K6, Canada;
caregivers; children; chronic disease; health care system; parents; rare disease; social care supports; FAMILY-CENTERED CARE; MEDICAL COMPLEXITY; PROFESSIONALS PERSPECTIVES; TRANSITIONS; STRATEGIES; PATIENT; ROUNDS; NEEDS; HOME;