title: Participation and quality of life in children and adolescents with congenital limb deficiencies: A narrative review.
abstract: Children and adolescents with congenital limb deficiencies are visibly and physically different from their peers. They present limitations in activities, depending on the severity of deficiency. Therefore they are at risk for lower participation in social and leisure activities. This might negatively influence the perception on their quality of life. The aim of this narrative review is to describe participation and quality of life in children with congenital limb deficiencies. Participation and quality of life are relatively new concepts. Psychosocial functioning, being closely related to the concept of quality of life, is described as well. A comprehensive review of the literature was conducted on participation, quality of life and psychosocial functioning in children and adolescents with congenital limb deficiencies. The review involved a systematic search using multiple data sources. Fifteen cross-sectional studies were included in this review. The literature to date provides limited knowledge on how children and adolescents with congenital limb deficiencies participate and how they perceive their quality of life. The psychosocial functioning, although described as at risk, appears to be comparable to healthy peers. In conclusion, more research is needed on how children and adolescents with congenital limb deficiencies participate and how they perceive their quality of life. A broader perspective will not only help parents in making the right choices for their children, but can also have implications for health care providers, teachers and agencies funding rehabilitation services.
authors: Rudolf Magnus Institute of Neuroscience and Centre of Excellence for Rehabilitation Medicine, University Medical Centre Utrecht and Rehabilitation Centre De Hoogstraat, Utrecht, The Netherlands. a.michielsen@dehoogstraat.nl
authors: Anka
authors: A
authors: Michielsen
authors: Iris
authors: I
authors: Van Wijk
authors: Marjolijn
authors: M
authors: Ketelaar
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D006801:Humans; D017880:Limb Deformities, Congenital / Q000523:psychology* / Q000534:rehabilitation; D010358:Patient Participation / Q000523:psychology*; D000297:Psychology, Adolescent; D002666:Psychology, Child; D011788:Quality of Life