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'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

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Title: '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
Language: English
Authors: Diana Fields (ORCID 0000-0003-1933-031X), Kathryn Asbury (ORCID 0000-0003-0011-457X)
Source: Journal of Research in Special Educational Needs. 2026 26(2).
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 14
Publication Date: 2026
Document Type: Journal Articles
Reports - Research
Descriptors: Foreign Countries, Learning Disabilities, Longitudinal Studies, Participation, Parent Attitudes, Children, Data Collection, Ethics, Recruitment, Research Problems, Attrition (Research Studies), Research Administration, Inclusion
Geographic Terms: United Kingdom
DOI: 10.1111/1471-3802.70066
ISSN: 1471-3802
Abstract: 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.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1504052
Database: ERIC
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  Data: <searchLink fieldCode="AR" term="%22Diana+Fields%22">Diana Fields</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-1933-031X">0000-0003-1933-031X</externalLink>)<br /><searchLink fieldCode="AR" term="%22Kathryn+Asbury%22">Kathryn Asbury</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-0011-457X">0000-0003-0011-457X</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Research+in+Special+Educational+Needs%22"><i>Journal of Research in Special Educational Needs</i></searchLink>. 2026 26(2).
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: 10.1111/1471-3802.70066
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  Data: 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.
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        Value: 10.1111/1471-3802.70066
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      – Text: English
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        PageCount: 14
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      – SubjectFull: Foreign Countries
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      – SubjectFull: Learning Disabilities
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      – SubjectFull: Longitudinal Studies
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      – SubjectFull: Participation
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      – SubjectFull: Parent Attitudes
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      – SubjectFull: Recruitment
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      – SubjectFull: Research Problems
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      – TitleFull: '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
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