Qualitative research in childhood neurodisability

Abstract

This commentary is on the original article by Cleary et al. on pages 1408–1415 of this issue.

Adjusting to life after pediatric stroke: A qualitative study

“…The involvement of stakeholders increases a project's real‐world impact through concrete changes within the healthcare system 35 and allows stakeholders to feel empowered through their engagement 36 . Participatory action research is especially recommended in the context of qualitative research examining childhood neurodisability 37 . Another key direction for future study is the examination of predictors of psychological adjustment after stroke, as this line of research can help determine which young people are most at risk for psychopathology.…”

“…36 Participatory action research is especially recommended in the context of qualitative research examining childhood neurodisability. 37 Another key direction for future study is the examination of predictors of psychological adjustment after stroke, as this line of research can help determine which young people are most at risk for psychopathology. Furthermore, investigation of therapy modalities is key to providing effective support for this population.…”

Qualitative health research in the fields of developmental medicine and child neurology

“…clinicians and policy makers) are actively engaged with the research team in designing and conducting the study, extending their participation beyond the more traditional role of ‘study participant’. Goodwin 2 has recommended this as a critical approach for qualitative researchers working in the field of childhood neurodisability to adopt. For example, in a single descriptive case study conducted to understand the roles and responsibilities of siblings to support their brother or sister with a neurodisability in the preparation for health care transition, the research team established a Sibling Youth Advisory Council to engage as a research partner in the study 28 .…”

“…The conduct of qualitative health research (QHR) provides the tools to describe and deepen our understanding of children’s (and their caregivers’) perceptions and experiences of health, well‐being, disability, and care. The value of conducting QHR studies, alone or as a component of a mixed methods project, is increasingly recognized in the fields of developmental medicine, 2 neurology, and rehabilitation sciences 3 . Diverse qualitative methodologies have been employed to study a variety of populations relevant to developmental medicine and child neurology, such as children and adolescents with epilepsy, 4 cerebral palsy, 5 acquired brain injury, 6 communication and cognitive disabilities, 7 and autism spectrum disorder 8 .…”

Social and Behavioural Outcomes of School Aged Autistic Children Who Received Community-Based Early Interventions

“…However, as the current study relied on single reports from parents to capture attitudes towards school, the current study reflects parents’ perception of their child’s attitudes towards school, based on information communicated to them by their child, the child’s teacher, or from their own observations. To that end, research is beginning to provide adults (Teti et al, 2016 ) and autistic children a much-needed voice in the literature (Clark & Adams, 2020 ; Goodwin, 2019 ). The past decade has seen a push within autism research to increase the uptake of self-report methodology, to include the lived experiences of autistic individuals who are able to provide valid and reliable accounts of their own perceptions and experiences (Shipman et al, 2010 ).…”