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The experiences of children and young people with a learning disability/need and a cleft lip and/or palate

Bates, Amanda, Forrester-Jones, Rachel, McCarthy, Michelle (2018) The experiences of children and young people with a learning disability/need and a cleft lip and/or palate. In: Craniofacial Society of Great Britain & Ireland (CFSGBI) Annual Scientific Meeting, 18-20 April 2018, Birmingham, UK. (Unpublished) (KAR id:66653)

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Background: International research suggests 7%-18% of those born with a cleft lip and/or palate (CL±P) also have a learning disability (LD). However, there is no known UK research about the qualitative experiences of living with both conditions, so support needs are unknown.Methods: Fifteen semi-structured interviews were conducted with CYP with CL±P, ten of whom had LDs/learning needs. Interview topics included cleft clinic experiences/treatment, self-perceptions and social activities. Thematic Analysis was used to identify data patterns. Findings: Three superordinate themes were found: self-image, resilience and struggles. A range of self-image perceptions were described (‘normal’, otherness and positive), with bullying victims having a poor self-image. Resilience was evident for CYP without LDs (e.g. quality friendships, control over treatment). There was an association between school type (mainstream/Special Educational Needs and Disability (SEND) schools) and positive/negative experiences. CYP without LDs and CYP with LDs in SEND schools had more positive experiences than CYP with LDs/needs in mainstream schools who frequently reported difficulties. Difficulties encompassed bullying (resulting in a desire for surgery), and treatment burden (e.g. fear of needles/anaesthetic). Discussion: Having LDs/learning needs were strongly linked with struggles (bullying and treatment burden). However, mediating factors such as how far CYPs’ needs and rights were met in hospital and school were pivotal. Further research into these environmental influences, with a view to better supporting CYP with CL±P and LDs/needs, is welcomed.

Item Type: Conference or workshop item (Paper)
Uncontrolled keywords: Children, Young people, Cleft, Learning disability
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Depositing User: Amanda Bates
Date Deposited: 06 Apr 2018 16:09 UTC
Last Modified: 10 Dec 2022 08:33 UTC
Resource URI: (The current URI for this page, for reference purposes)

University of Kent Author Information

Bates, Amanda.

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Forrester-Jones, Rachel.

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McCarthy, Michelle.

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