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The experiences of children and young people with and without learning disabilities who have a cleft lip and/or palate

Bates, Amanda Jane (2017) The experiences of children and young people with and without learning disabilities who have a cleft lip and/or palate. Doctor of Philosophy (PhD) thesis, University of Kent,. (doi:10.22024/UniKent/01.02.61543) (Access to this publication is currently restricted. You may be able to access a copy if URLs are provided) (KAR id:61543)

Language: English

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Background and aim: Present at birth, a cleft lip and/or palate (CL±P) - affecting 1 in 700 births - requires a number of interventions (e.g. surgical, speech and language therapy) from birth until late adolescence. Increased psychosocial problems are reported in the literature for children and young people (CYP) with additional condition(s) to a CL±P (Feragen & Stock, 2014). However, the presence of a learning disability (LD) in addition to a CL±P remains qualitatively unexplored. How CYP with LDs and CL±P experience their different appearance, treatment, and their friendships, is unknown, making it difficult to ascertain their need for further support/interventions. This study therefore explored their experiences.

Method: The triangulation of data sources resulted in 39 semi-structured interviews with 15 CYP with clefts (aged 10-16) with and without LDs, 15 parent interviews and nine interviews with Healthcare Professionals. Thematic Analysis was used to determine patterns across the data.

Results: Nine superordinate themes were identified, and overlapped between participant groups; self-image, struggles, resilience, double vulnerability (of having LDs and a cleft), tensions, good practice, and promotion of rights. Struggles were particularly apparent for CYP with LDs/learning needs, and their parents. Resilience was most strongly asserted by CYP without LDs and their parents. However, key mediating factors affected experiences of appearance, treatment and friendships, namely how familial needs were met in hospital and school. Results led to an interpretative framework, and conceptual flow-diagram of the findings.

Conclusion: Individualised care and support in hospitals and schools is pivotal to ensure inclusion, and improve the experiences of CYP with LDs and CL±P.

Item Type: Thesis (Doctor of Philosophy (PhD))
DOI/Identification number: 10.22024/UniKent/01.02.61543
Additional information: The author of this thesis has requested that it be held under closed access. We are sorry but we will not be able to give you access or pass on any requests for access. 04/05/22
Uncontrolled keywords: Cleft, craniofacial, learning disability, intellectual disability, experience, service, treatment, support, decision, appearance, body image, friendship, bullying, psychosocial, self-esteem, self report, self-worth, social, self-perception, quality of life, adjustment, resilience, communication, information, patient satisfaction
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research
Depositing User: Users 1 not found.
Date Deposited: 24 Apr 2017 17:00 UTC
Last Modified: 04 May 2022 07:44 UTC
Resource URI: (The current URI for this page, for reference purposes)
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