It's really difficult because sometimes you want to be special and different and sometimes you just want to be like everybody else
Including families of children with chromosomal learning disabilities in a longitudinal qualitative cohort study
Bibliographic Data
| ID | 7161122 |
|---|---|
| Authors | Diana Fields (0000-0003-1933-031X, Psychology in Education Research Centre, Department of Education University of York York UK), Kathryn Asbury (0000-0003-0011-457X, Psychology in Education Research Centre, Department of Education University of York York UK, corresponding author) |
| Year | 2026 |
| Volume | 26 |
| Issue | 2 |
| Publication date | 2026-04-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Journal of Research in Special Educational Needs (JOURNAL) |
| Journal identifiers | ISSN: 1471-3802 • E-ISSN: 1471-3802 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/1471-3802.70066 |
| OpenAlex | W7128297397 |
| Language | EN |
| References cited | 29 |
The UK Economic and Social Research Council (ESRC) is considering developing a longitudinal qualitative cohort study of seldom‐heard families. This paper presents findings from a scoping study of best practice in qualitative longitudinal research focused on families with a child with a chromosomal learning disability. We conducted in‐depth online interviews with twelve parents and identified their views of research participation in relation to recruitment, retention, data collection and ethics. They identified barriers to and facilitators of participation in qualitative longitudinal research for themselves and their children. Their views, analysed using template analysis, were used to co‐produce a suite of recommendations for the ESRC. All participants welcomed the proposed research and believed that amplifying the voices of families with experience of learning disability could make a tangible difference to their experience and to public understanding of disability
Data collection · Learning disability · Longitudinal study · Qualitative property · Qualitative research · Suite · Disability Rights and Representation · Down syndrome and intellectual disability research · Family and Disability Support Research
Documents of Life 2
Using Templates in the Thematic Analysis of Text
Too Vulnerable to Involve? Challenges of Engaging Vulnerable Groups in the Co-production of Public Services through Research
I am everything but myself’
Hindsight, foresight and insight
Evolving creativity in qualitative longitudinal research with children and teenagers
Adding Time into the Mix
Ethical Mindfulness and Reflexivity
| Citation velocity | historical |
|---|---|
| Highly cited | No |