Objective: This is a protocol for a review that will focus on the voice of caregivers to children and adolescents with spinal cord injury (SCI) in research. The objective is to identify the different aspects of caregivers’ voice in research, by mapping and exploring available research with an intention to study the perspective of and/or get information from caregivers of children and adolescents with SCI.
Introduction: Caregivers play a critical role in the lives of children with SCI, yet relatively little is known about practices and experiences of being a caregiver and how informal caregiving might impact the children’s health and function. Caregivers of children and adolescents with SCI can be given a voice by being involved in research. However, there is a need for a comprehensive description of the different aspects of voice of caregivers of children and adolescents with SCI as well as other settings where people with lived experience are involved in research.
Inclusion criteria: The population in the included articles are caregivers of children and adolescents with SCI. The concept is an intention to explore the perspective of and/or get information from caregivers, excluding studies where caregivers e.g., only fill in demographics or proxy data. There is no specific context, e.g., all health care systems and geographical regions will be included.
Methods: The sources will be databases (CINAHL, ERIC, MEDLINE, PsycInfo and Scopus), reference lists of/articles referencing included articles and manual search of two journals (Journal of Spinal Cord Medicine, Spinal Cord), with the limitation of articles written from 2008 and onwards. During the screening, articles written in other languages than English, Swedish, Norwegian, and Danish will be excluded. The extraction will be performed using a data extraction form and the result will be presented in a flowchart, a table, and a picture.
2022.