Background to the study
The largest group of people living with repaired cleft lip and/or palate are adults. Previous research has identified that cleft-related concerns can persist well into adulthood, and cleft is therefore gaining increasing recognition as a lifelong condition. Although the physical impact of cleft on speech is well understood, the social and psychological impacts of cleft-related speech differences have not been widely explored. The aim of this study was to examine people’s own perception of their cleft-related speech differences in adulthood, and the impact that this may have had on their education, work and social lives. The study was conducted by interviewing New Zealand adults for 30-60 minutes each.
A total of 17 participants aged between 18 and 84 participated in the study between August and November 2020.
What did the study find?
The study found that most participants described themselves to have some ongoing speech concerns arising from their cleft. Although most participants felt that they could easily be understood, many participants commented that they noticed their speech sounded different to that of their peers. While most people identified ongoing cleft related speech concerns, some people also reported having cleft related appearance concerns.
Participants perceived themselves to have a variety of speech differences. These included the perception that some of their speech sounds sounded different, that there were sounds they couldn’t make, that they had a lisp, or that they were mumbling. Additionally, some participants reported having difficulties with hearing which impacted on their speech. Many people found talking on the phone or listening to their voice back on an audio or video recording to be quite daunting, although some people found this to be a strength for them. The access to Speech Language Therapy growing up was mixed. While some people had access to it, many people did not have access to it until much later in life, and others had not managed to access it at all. However, once people did access SLT, they generally reported that they were satisfied with it, even though it sometimes took a lot of hard work to achieve the desired results!
The study also found that cleft-related speech differences impacted on people’s educational and workplace experiences, and their social and relationship experiences. Cleft-related speech differences impacted on participants’ educational and work experiences in many ways, including choosing to opt out of opportunities and being subjected to discrimination, as well as positively influencing their choice of work in some cases. Overall, participants reported their social confidence to be lower than that of the general population despite reporting having healthy relationships with friends and family. Participants typically reported establishing new friendships and romantic relationships to be quite difficult.
Finally, the study found that emotional wellbeing concerns were common in the cohort, with access to psychology support services having been very limited and generally insufficient. In many cases these concerns were ongoing and people were still struggling to access appropriate support.
Taken together, the findings indicate 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 from the study
The study made a number of recommendations for consideration. These included:
- Recommendations for Clinical Practice
- Greater use of patient self-reported outcome measures when planning and evaluating cleft treatment. This helps to ensure that the goals and expectations of patients align with the goals and expectations of cleft teams.
- Signposting to self-help resources. Although the study shows strongly that Clinical Psychology support is needed, it is recognised that this takes time to establish. In the meantime, there are a number of excellent self-help psychology resources people could access with the support and supervision of their cleft team, GP or other counselling service.
- Establish a 20-year cleft appointment. Although many people are still receiving cleft treatment at age 20, many others have already been discharged. It is around this age that most people are beginning university, careers, and romantic relationships. Therefore, it would be an appropriate age to have a clinical review, as patients’ priorities may have changed since they were last assessed and new concerns may have arisen (for example, speech concerns, or wanting to access genetic counselling).
- Take a holistic view of cleft care. This is to recognise that cleft is an emotional journey as well as a physical one. It is important for health professionals to understand where cleft treatment fits within the wider context of an individual’s life goals and ambitions.
- Promoting the cleft service to primary care providers. This would ensure that GPs and dentists have a better understanding of cleft and know when to refer to the cleft team.
- Recommendations for Health Policy (Ministry of Health)
- Develop a cleft service specification. This would provide greater equity of cleft care across New Zealand by ensuring people are entitled to the same level of treatment no matter where in the country they live. An example of what this should ideally include is contained within the thesis.
- Provision of life-long care. This study clearly demonstrates that cleft is a lifelong condition. The health policy needs to be updated to reflect this by guaranteeing free access to cleft care at any age in life.
- Inclusion of Clinical Psychology on cleft teams. This study also clearly demonstrates that their are unmet emotional wellbeing needs for people affected by cleft. Having a specialist Clinical Psychologist on cleft teams would go a long way to enabling patients and their families to be supported at all stages of their cleft journey.
Additionally, 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.
What are the next steps?
The next step is to share this data with the people who have the ability to implement some of the recommendations. I anticipate doing this in the following ways:
- Presenting the study findings and recommendations at the upcoming international cleft conferences in the US (April 2022) and the UK (July 2022), and New Zealand annual cleft team meeting (November 2022)
- Presenting the study, its findings and recommendations in academic peer-reviewed scientific journals (in a similar manner to my previous work in the United Kingdom)
- Presenting the information to government ministers and the Ministry of Health (ideally alongside other stakeholders such as Cleft Teams and Cleft New Zealand)
In addition, I am hopeful to be able to conduct an additional study with the University of Canterbury to trial and evaluate one or more of the recommendations from this study to further strengthen the evidence base.
I would like to thank the 17 participants who took part in this study. Your honesty and thoughts have been incredibly valuable, without you none of this would have been possible – I hope you feel proud to have been a part of this, already you have made a much bigger difference than I ever could have done on my own. Thank you also to Cleft New Zealand and the New Zealand Cleft Teams for your support of this study and for promoting it to the people you interact with in the cleft community.
I also would like to extend my thanks to Dr Phoebe Macrae and Tika Ormond at the University of Canterbury and Dr Nicola Stock at the Centre for Appearance Research at the University of the West of England for your supervision and stewardship throughout this study – it has been a pleasure to work with all of you and I hope we can continue to do so to carry this work forward.
Read the thesis in full
My Master’s thesis in its entirety can be freely accessed through the University of Canterbury Research Repository available here: https://ir.canterbury.ac.nz/handle/10092/103329 (121 pages)