title: Families with children with medical complexity and self-management of care: a systematic review of the literature.
abstract: This review analyzes the quantitative literature on children with medical complexity (CMC). Using the Pediatric Self-Management Model, evidence is summarized into facilitators and barriers to self-management. Current quantitative research focuses on the caregiver burden in families with CMC. A model for social work with families with CMC was introduced in response to these findings. A re-envisioned model allows the child with medical complexity to be seen as whole rather than focusing on typically deficit-based areas of medical specialty or service provision.
authors.affiliation: a Division of Developmental and Behavioral Sciences , Children's Mercy , Kansas City , Missouri , USA.
authors.forename: Kelly
authors.initials: K
authors.lastname: Trowbridge
authors.forename: Lisa
authors.initials: L
authors.lastname: Mische-Lawson
mesh_terms: D017028:Caregivers / Q000523:psychology; D002648:Child; D002654:Child Care / Q000523:psychology*; D017281:Cost of Illness; D019988:Children with Disabilities / Q000523:psychology; D005190:Family / Q000523:psychology*; D006801:Humans; D012648:Self Care / Q000523:psychology*; D012947:Social Work
keywords: children with medical complexity; chronic illness; disability; medically fragile; self-management; social work; technology dependent