Understanding the long-term effect of speech differences in cleft lip and palate: a study of how cleft-related speech differences influence educational, vocational and social experiences in New Zealand adults.

Background: The largest group of people living with repaired cleft lip and/or palate are adults. Previous research has identified that cleft-related differences and concerns can persist well into adulthood, and cleft is therefore gaining increasing recognition as a lifelong condition. Although the physiological impact of cleft on speech is well understood, the social and psychological impacts of cleft-related speech differences are less explored. The aim of this study was to examine self-reported perceptions of cleft-related speech differences in adulthood, and their educational, vocational and social impacts on New Zealand adults. Method: Drawing upon previous international literature, a mixed-methods study was designed. This primarily involved individual semi-structured qualitative interviews with adults born with cleft. Interviews lasted between 30-60 minutes, and were followed with a form containing five quantitative standardised measures. A total of 17 participants aged between 18 and 84 participated in the study between August and November 2020. Sixteen participated using Zoom video conferencing software, and one participant opted for a face-to- face interview. Qualitative data were analysed using thematic analysis, while quantitative data were analysed using descriptive statistics. Results: Most participants perceived themselves to have some ongoing speech concerns arising from their cleft, with participants overall reporting their speech acceptability to be poorer than their speech intelligibility. While most people identified ongoing cleft related speech concerns, a proportion of these also reported cleft related appearance concerns. Four overarching themes associated to cleft-related speech differences were identified. The first theme explored participants’ perceptions of speech differences and speech language therapy (SLT). The remaining themes focussed on the impact of cleft-related speech differences on 1) educational and vocational experiences, 2) social and interpersonal experiences, and 3) emotional wellbeing. Cleft-related speech differences impacted on participants’ educational and vocational experiences in a myriad of ways, including choosing to opt out of opportunities and being subjected to discrimination, as well as positively influencing their choice of vocation. Overall, participants reported their social competence to be lower than that of the general population despite reporting healthy relationships with friends and family. Participants typically reported establishing new friendships and romantic relationships to be difficult. Finally, emotional wellbeing concerns were prevalent in the cohort, with access to psychology support services having been limited. Conclusion: Responses from this self-selecting cohort indicated that cleft-related speech concerns and/or the psychological impact of previous or current cleft-related speech concerns may persist well into adulthood. The lack of access by some in the cohort to speech language therapy services growing up, as well as the lack of access to psychological services by almost all of the cohort are areas worthy of further attention. Recommendations for clinicians and charitable services working in cleft care are offered, in addition to recommendations for future health policy, which would standardise access to cleft care across New Zealand. Further research both locally and internationally is recommended to better understand the long-term impact of cleft-related speech differences, and to evaluate the efficacy of any interventions implemented as a result of this study