JCPSLP Vol 23, Issue 1 2021

of their post-care. Three of the five parents who selected “other” in response to this post-care item provided additional comments to describe their post-care. One identified breastfeeding as part of the post-care procedure, and one identifying stretches and chiropractic treatment. A third parent commented that the prescribed treatment of stretches over a prolonged period (4 weeks) was traumatic. To end the survey, respondents were asked if their decision-making process would be different if faced with the situation again. Ten participants did not respond to this question. Of the 32 participants who did respond to this item, 20 (62%) responded that they would make no change, including 8 of 9 adults (88.9%) who replied to this question. Interestingly, parents nearly equally responded “no” ( n = 12; 52.2%) and “yes” ( n = 11; 47.8%) to this question. For parents who selected “yes”, they were given the opportunity to provide further description in a text box. These parents listed a number of things they would do differently, with four stating they would feel less hesitant and/or do the procedure more quickly. Two parents stated they would still pursue the release, but using a different method. Four parents commented that they would do additional research prior to the release and/or seek out someone with specific knowledge in the procedure, with one of these parents specifically mentioning looking into orofacial myofunctional therapy. One parent indicated that they would seek out care closer to home to improve post-care support. Discussion The evidence linking tongue-tie to feeding and speech issues is limited yet the rate of tongue-tie release has increased substantially over the past decade. Evidence- based practice should go beyond the research evidence to include patient preferences and circumstances in clinical decision-making. Therefore, this preliminary study aimed to describe the experiences and influences of adults who have had their tongue-tie released and parents who have had their child’s tongue-tie released. Results of the survey suggest that the motivation for undergoing a tongue-tie release differed between the two groups of respondents. Adults who reported having a tongue-tie themselves cited a range of speech, dental, and head, neck and jaw issues as reasons for having their tongue-tie released. Given the limited evidence linking tongue-tie release with improved outcomes in these areas, it is possible that the focus on dental issues reflects the health professional who provided the diagnosis and performed the tongue-tie release in most circumstances. Nonetheless, evidence indicates that the restricted movement of the tongue that accompanies tongue-tie can lead to mandibular dysfunction, and mouth breathing behaviours (Jang et al., 2011; Torii, 2015). Parents who reported having made the decision to have their child’s tongue-tie released most frequently cited feeding difficulties as their motivation, particularly if the child was under 1 year of age when the release occurred. For children over 1 year of age at the time of release, the reasons cited were more variable and included feeding, speech, dental or sleep concerns (which may or may not have been directly related to the dental issues; Yoon et al., 2017). Only one parent indicated that the tongue-tie release did not lead to positive change. Given that the survey was posted on social media, and to groups with a focus on tongue-tie, it is possible that this result reflects participant bias in that only participants who had a positive experience opted to complete the survey. It may also reflect a perceived necessity or responsibility by parents to

support their decision to have their child undergo a painful procedure. It is also possible that some of the changes reported by respondents were not directly related to the tongue-tie release and/or reflect a placebo effect. More rigorous and controlled studies of the benefits are needed to determine the degree to which these occur. A primary aim of this study was to gather preliminary information regarding self-reported factors influencing people’s decision to have a tongue-tie released, either for themselves, or others. Overall, respondents appeared to have been making decisions about tongue-tie release using information related to the procedure, with more than 70% indicating that they had been informed of the risks and more than 85% indicating they were made aware of post-care procedures. Similarly, more than 80% indicated that they had sought additional information prior to making the decision. However, our survey did not include an item that specifically asked respondents to indicate whether health professionals had informed them of the current state of evidence regarding the efficacy of the procedure in improving feeding, speech production or other cited concerns (e.g., headaches). For instance, for parents who were motivated by feeding issues, were they made aware that tongue-tie release has not been consistently shown to improve breastfeeding outcomes? (Berry et al., 2012; Emond et al., 2014; O’Shea et al., 2017; Power & Murphy, 2014). Further, while tongue-tie release is considered to be a low-risk procedure (Glynn et al., 2012), a range of complications have been reported including excessive bleeding, reattachment of the frenulum, scar tissue that restricts tongue movement, oral aversion, development of a frontal lisp, numbness and/or weakness of the tongue (Douglas & Geddes, 2018; Varadan et al., 2019). Future research should include an in-depth qualitative investigation (e.g., interviews or focus groups) to better understand the information being provided to people who are considering tongue-tie release, including the degree to which they are made aware of the risks and the degree to which they understand the extent of post-care procedures. The majority of respondents in the current study reported experiencing positive change following the tongue-tie release. However, reports of positive change must be considered within the context of a number of limitations. First, we did not include a grading or classification system to identify the severity of the tongue-tie so we cannot quantify the initial level of restricted movement. Second, we did not ask respondents to rate the degree of change post-release. It is possible that degree of change may have interacted with severity of the tongue-tie. Third, we did not ask how long ago the tongue-tie had been released so it is possible that reports of improvement did not accurately represent participants’ experiences if the procedure had been conducted many years ago. Given the preliminary nature of this study, participant numbers were low. Further, the majority of respondents identified Australia as country of residence. The number of Australian respondents was at least partially due to authors’ location and the use of some local social media sites to distribute the survey. Future studies should specifically target international responses to explore whether culture and differences in health services influence the decision of whether or not to have a tongue-tie release and the information provided to people during the decision-making process. In addition, exploring this topic would positively contribute to creating a broader understanding of the role of patient perspectives and circumstances within evidence- based practice.

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JCPSLP Volume 23, Number 1 2021

Journal of Clinical Practice in Speech-Language Pathology