Perceptions of Interdisciplinary Cleft Treatment: A Qualitative Pilot Study of Children with Cleft Palate and Their Parents

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Title: Perceptions of Interdisciplinary Cleft Treatment: A Qualitative Pilot Study of Children with Cleft Palate and Their Parents
Language: English
Authors: Tara Mouton (ORCID 0009-0007-9923-8391), Fien Allemeersch, Kristiane Van Lierde, Greet Hens, Ann Goeleven, Nick Verhaeghe, Jena Vandenbroucke, Kim Bettens, Cassandra Alighieri
Source: International Journal of Language & Communication Disorders. 2026 61(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: 15
Publication Date: 2026
Document Type: Journal Articles
Reports - Research
Descriptors: Congenital Impairments, Children, Interdisciplinary Approach, Quality of Life, Foreign Countries, Costs, Hospitals, Health Insurance, Psychological Patterns, Surgery, Stress Management, Coping
Geographic Terms: Belgium
DOI: 10.1111/1460-6984.70207
ISSN: 1368-2822
1460-6984
Abstract: Background: Treating children with a cleft palate with or without a cleft lip (CP±L) requires an interdisciplinary approach. While this coordinated, long-term treatment approach intends to enhance children's quality of life (QoL), it may still be perceived as burdensome for the children and their environment. Aims: This study investigated the perspectives of both children with a CP±L and their parents, with a particular focus on the psychological and financial impact of interdisciplinary cleft treatment. Methods: A total of 10 parents (mean age of 48.0 years) and 7 children with CP±L (mean age of 14.3 years) were recruited via the interdisciplinary cleft team of Ghent University Hospital and social media outreach. As a pilot study, the small sample was intentionally selected to enable in-depth qualitative exploration. An independent interviewer conducted seven semi-structured interviews with the child and parent(s) simultaneously, collecting data until data saturation was reached. An inductive thematic approach was used to analyse the data. To enhance the confirmability, credibility and transferability of the research findings, researcher triangulation and member checks were conducted. Results: The analyses of the interviews revealed four major themes of importance to the children and their parents: (1) managing treatment costs, including costs related to hospitalization insurance and out-of-pocket therapy and treatments; (2) emotional journey through diagnosis and surgery, particularly around navigating the diagnosis, pre-surgical anxiety and reflections on surgical necessity and adjustment; (3) collaborative care experiences, encompassing experiences with cleft team support, time investment and perceived freedom of treatment choice; and (4) acceptance and adaptation, including children's positive adjustment and parents' coping strategies. Conclusions: Findings revealed that interdisciplinary treatment influences more than just financial and medical aspects of cleft care, but also perceived QoL of children with CP±L and their parents. The way participants perceive CP±L plays a key role in shaping their experience of the associated burdens. Despite the described challenges, such as the emotional toll and significant financial burden associated with interdisciplinary treatment, participants recognized its benefits, particularly improvements in appearance and functionality, which serve as strong motivation for continuing treatment. Their accounts illustrate the importance of integrating psychosocial support, such as counselling before and after surgeries, and practical financial guidance to help families manage treatment costs. By capturing the voices of both children and parents, our findings provide concrete evidence for designing interventions that reduce stress, enhance understanding, and improve family coping during the treatment trajectory.
Abstractor: As Provided
Entry Date: 2026
Accession Number: EJ1500638
Database: ERIC
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  Data: Perceptions of Interdisciplinary Cleft Treatment: A Qualitative Pilot Study of Children with Cleft Palate and Their Parents
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  Data: <searchLink fieldCode="AR" term="%22Tara+Mouton%22">Tara Mouton</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0007-9923-8391">0009-0007-9923-8391</externalLink>)<br /><searchLink fieldCode="AR" term="%22Fien+Allemeersch%22">Fien Allemeersch</searchLink><br /><searchLink fieldCode="AR" term="%22Kristiane+Van+Lierde%22">Kristiane Van Lierde</searchLink><br /><searchLink fieldCode="AR" term="%22Greet+Hens%22">Greet Hens</searchLink><br /><searchLink fieldCode="AR" term="%22Ann+Goeleven%22">Ann Goeleven</searchLink><br /><searchLink fieldCode="AR" term="%22Nick+Verhaeghe%22">Nick Verhaeghe</searchLink><br /><searchLink fieldCode="AR" term="%22Jena+Vandenbroucke%22">Jena Vandenbroucke</searchLink><br /><searchLink fieldCode="AR" term="%22Kim+Bettens%22">Kim Bettens</searchLink><br /><searchLink fieldCode="AR" term="%22Cassandra+Alighieri%22">Cassandra Alighieri</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Language+%26+Communication+Disorders%22"><i>International Journal of Language & Communication Disorders</i></searchLink>. 2026 61(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: 15
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  Data: 2026
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Congenital+Impairments%22">Congenital Impairments</searchLink><br /><searchLink fieldCode="DE" term="%22Children%22">Children</searchLink><br /><searchLink fieldCode="DE" term="%22Interdisciplinary+Approach%22">Interdisciplinary Approach</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+Life%22">Quality of Life</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Costs%22">Costs</searchLink><br /><searchLink fieldCode="DE" term="%22Hospitals%22">Hospitals</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Insurance%22">Health Insurance</searchLink><br /><searchLink fieldCode="DE" term="%22Psychological+Patterns%22">Psychological Patterns</searchLink><br /><searchLink fieldCode="DE" term="%22Surgery%22">Surgery</searchLink><br /><searchLink fieldCode="DE" term="%22Stress+Management%22">Stress Management</searchLink><br /><searchLink fieldCode="DE" term="%22Coping%22">Coping</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Belgium%22">Belgium</searchLink>
– Name: DOI
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  Data: 10.1111/1460-6984.70207
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  Data: 1368-2822<br />1460-6984
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: Treating children with a cleft palate with or without a cleft lip (CP±L) requires an interdisciplinary approach. While this coordinated, long-term treatment approach intends to enhance children's quality of life (QoL), it may still be perceived as burdensome for the children and their environment. Aims: This study investigated the perspectives of both children with a CP±L and their parents, with a particular focus on the psychological and financial impact of interdisciplinary cleft treatment. Methods: A total of 10 parents (mean age of 48.0 years) and 7 children with CP±L (mean age of 14.3 years) were recruited via the interdisciplinary cleft team of Ghent University Hospital and social media outreach. As a pilot study, the small sample was intentionally selected to enable in-depth qualitative exploration. An independent interviewer conducted seven semi-structured interviews with the child and parent(s) simultaneously, collecting data until data saturation was reached. An inductive thematic approach was used to analyse the data. To enhance the confirmability, credibility and transferability of the research findings, researcher triangulation and member checks were conducted. Results: The analyses of the interviews revealed four major themes of importance to the children and their parents: (1) managing treatment costs, including costs related to hospitalization insurance and out-of-pocket therapy and treatments; (2) emotional journey through diagnosis and surgery, particularly around navigating the diagnosis, pre-surgical anxiety and reflections on surgical necessity and adjustment; (3) collaborative care experiences, encompassing experiences with cleft team support, time investment and perceived freedom of treatment choice; and (4) acceptance and adaptation, including children's positive adjustment and parents' coping strategies. Conclusions: Findings revealed that interdisciplinary treatment influences more than just financial and medical aspects of cleft care, but also perceived QoL of children with CP±L and their parents. The way participants perceive CP±L plays a key role in shaping their experience of the associated burdens. Despite the described challenges, such as the emotional toll and significant financial burden associated with interdisciplinary treatment, participants recognized its benefits, particularly improvements in appearance and functionality, which serve as strong motivation for continuing treatment. Their accounts illustrate the importance of integrating psychosocial support, such as counselling before and after surgeries, and practical financial guidance to help families manage treatment costs. By capturing the voices of both children and parents, our findings provide concrete evidence for designing interventions that reduce stress, enhance understanding, and improve family coping during the treatment trajectory.
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  Data: 2026
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        Value: 10.1111/1460-6984.70207
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