Nikki Ow1,2, Adriana Appau3, Mohamad Matout4, Nancy E Mayo3,5. 1. School of Physical and Occupational Therapy, McGill University, Montreal, Canada. xiao.ow@mail.mcgill.ca. 2. Center for Outcomes Research and Evaluation (CORE), The Research Institute of the McGill University Health Center (RI-MUHC), 5252 de Maisonneuve Blvd, 2C.11, Montreal, QC, H4A 3S5, Canada. xiao.ow@mail.mcgill.ca. 3. School of Physical and Occupational Therapy, McGill University, Montreal, Canada. 4. The Research Institute of the McGill University Health Center (RI-MUHC), Montreal, Canada. 5. Center for Outcomes Research and Evaluation (CORE), The Research Institute of the McGill University Health Center (RI-MUHC), 5252 de Maisonneuve Blvd, 2C.11, Montreal, QC, H4A 3S5, Canada.
Abstract
PURPOSE: Many neuromotor conditions affect children from a young age through to adulthood, impacting their quality of life (QOL). For QOL to be accurately measured in these children, pediatric QOL must first be conceptualized. Some theoretical models and definitions have been proposed to understand QOL, but they were not developed for the pediatric population. The purpose of this review is to build on existing frameworks of QOL and develop a framework and definition of pediatric QOL for measurement purposes, by integrating the findings of multiple qualitative studies involving children and adolescents with physical disabilities. METHODS: A systematic search was conducted on four databases. Inclusion criteria were qualitative studies with participants with common neurological and neuromuscular conditions. The content of studies had to involve the lived experiences of children and adolescents with disabilities. Thematic synthesis was conducted. RESULTS: 48 studies were included. Results generated a schema of the causes and the mitigators of QOL. This consisted of casual indicators of QOL, mitigators, and components of QOL. Themes under QOL included thoughts and feelings, fitting in, self-image, about the future, and independence. A new framework and definition of pediatric QOL were proposed. CONCLUSIONS: In conclusion, pediatric QOL for children with disabilities is formed by their thoughts and feelings, being accepted by society, being able to forge an identity that is beyond their disability, having autonomy, and having a hope for the future. The resulting QOL framework proposed here can also aid future development of QOL measures in children with physical disabilities.
PURPOSE: Many neuromotor conditions affect children from a young age through to adulthood, impacting their quality of life (QOL). For QOL to be accurately measured in these children, pediatric QOL must first be conceptualized. Some theoretical models and definitions have been proposed to understand QOL, but they were not developed for the pediatric population. The purpose of this review is to build on existing frameworks of QOL and develop a framework and definition of pediatric QOL for measurement purposes, by integrating the findings of multiple qualitative studies involving children and adolescents with physical disabilities. METHODS: A systematic search was conducted on four databases. Inclusion criteria were qualitative studies with participants with common neurological and neuromuscular conditions. The content of studies had to involve the lived experiences of children and adolescents with disabilities. Thematic synthesis was conducted. RESULTS: 48 studies were included. Results generated a schema of the causes and the mitigators of QOL. This consisted of casual indicators of QOL, mitigators, and components of QOL. Themes under QOL included thoughts and feelings, fitting in, self-image, about the future, and independence. A new framework and definition of pediatric QOL were proposed. CONCLUSIONS: In conclusion, pediatric QOL for children with disabilities is formed by their thoughts and feelings, being accepted by society, being able to forge an identity that is beyond their disability, having autonomy, and having a hope for the future. The resulting QOL framework proposed here can also aid future development of QOL measures in children with physical disabilities.
Entities:
Keywords:
Child health; Chronic health conditions; Disability; Quality of life
Authors: Mark A Ferro; Saad A Qureshi; Lilly Shanahan; Christiane Otto; Ulrike Ravens-Sieberer Journal: Qual Life Res Date: 2021-07-31 Impact factor: 4.147