Identification of the needs of children with neurodisability and their families at different stages of development: A qualitative study protocol

Abstract

BackgroundWithin the field of childhood neurodisability, the tendency in the study of needs has been to categorize them based on ability (motor, verbal, cognitive). However, current perspectives such as F-words, family-centered practices, or the principles of family empowerment, lead the researcher to ask: What are these needs according to the stage of development?Methods and analysisA descriptive qualitative study will be carried out. Several methods will be followed to ensure the reliability and validity of the results, and the Standards for Reporting Qualitative Research and the Consolidated criteria for reporting qualitative research checklists will also be used to guide the project. Data collection is sought from three main sources: Focus groups (detection of needs), a survey to collect sociodemographic and clinical data necessary to obtain an overview of the context of the participants, and a survey to find out the level of satisfaction with this initiative.DiscussionThe results expected to be obtained after this study will respond to the main needs of families with childhood neurodisability, based on age groups and covering the whole territory of the Spanish population. Thanks to these detected needs, it will be possible to design future lines of work to improve the design of family-centered practices and increase the empowerment of families. The intention is to detect needs by stage of development, which can be categorized within the F-words framework, showing families and professionals a clear picture of the needs of this population.