Perceptions of Interdisciplinary Cleft Treatment: A Qualitative Pilot Study of Children With Cleft Palate and Their...

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.

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.

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.

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.

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.

Speech and language therapy represents a central component of cleft care and also contribute to families' financial and time burden. Speech-language pathologists (SLPs) should be aware of these pressures and consider how flexible service delivery models might help reduce strain. Interdisciplinary care for children with CP±L places substantial emotional and financial demands on families. As integral members of cleft teams, SLPs can help ease these pressures through consistent communication, family education and coordination with other professionals, ensuring that speech and communication goals remain prioritized alongside surgical or medical care. Understanding the broader context of treatment burden helps SLPs deliver more family-centred care. By acknowledging financial, emotional and practical challenges, SLPs can tailor intervention approaches to enhance engagement, resilience and long-term communicative outcomes.

What is already known on this subject Treating children with a cleft palate with or without a cleft lip (CP±L) requires an interdisciplinary approach aimed at improving their quality of life (QoL). Treatment typically involves surgeries and non-surgical interventions such as speech therapy and orthodontics. Previous insights indicate that interdisciplinary treatment can be perceived as burdensome due to factors such as financial costs, emotional strain and the time investment required. Furthermore, the experiences and perceptions of children and parents play a critical role in how they view the benefits and challenges of treatment.What this paper adds to existing knowledge This study addresses a gap in current evidence by exploring experiences of children with CP±L and their parents, which have been under-researched qualitatively. While previous studies identified financial, emotional and time-related burdens of interdisciplinary care, limited insight exists into how families perceive and make sense of these challenges in their daily lives. Our findings show that families' perceptions, such as viewing treatment as worthwhile despite its demands, strongly influence their coping and adaptation to long-term care. This qualitative perspective complements quantitative research by offering a deeper understanding of the subjective dimensions of treatment burden and motivation for continued care.What are the potential or actual clinical implications of this work? This study highlights the importance for a holistic, interdisciplinary approach to cleft treatment that addresses medical, emotional and financial challenges. While service-wide collaboration and shared decision-making are essential, speech-language pathologists (SLPs) play a key role in providing empathetic communication, supporting family resilience, and managing treatment expectations. These insights are also relevant for SLPs in other domains, demonstrating how integrating patient and parent perspectives can enhance family-centred practice. By combining individual support with coordinated teamwork, SLPs can help reduce treatment burdens and contribute to improved long-term outcomes for children and their families.