JCPSLP Vol 23, Issue 1 2021

generally involved; timing of the procedure) and reported recommendations for management after release. Following this review, questions were designed by two of the authors (AB, BZ) and then reviewed by two speech-language pathologists. Three speech-language pathology students then reviewed and completed the survey to ensure questions were easy to understand and accurately interpreted. Survey design The final version of the online survey 1 included items on sociodemographic characteristics (e.g., age, geographical location). Participants were required to be either: (a) an adult who had tongue-tie release themselves; or (b) a parent where their child had a tongue-tie release. The survey items were quantitative in nature and required the participant to select their response from a list of options. There were 16 items on the survey focused on descriptive information related to the decision to have a tongue-tie release (e.g., age at release, reason for release), and the respondent’s experience with tongue-tie release (e.g., change in symptoms). Only one of these questions was qualitative in nature and asked participants to describe a tongue-tie in their own words. Of the remaining 15 items, six were yes/no questions, two of which included an additional “not sure” option. Two of the 15 items required participants to select from a list of options and an additional seven items used this same format, but with the option to select “Other” and provide additional written information in a text box. The first and second author coded all data prior to data analyses. Forced choice responses were converted to numerical categories. The brief text responses provided when given the option to select “Other” were reviewed and coded for themes to identify the frequency in which these themes were reported by adults or parents. These themes were initially identified by the first author and then reviewed and confirmed by the second and third author. Participants Participants were recruited through tongue-tie groups on social media (e.g., Facebook) over a six-week period. In order to participate in the study, respondents needed to be at least 18 years of age. In addition, since a primary aim of the study was to explore the decision-making process in having a tongue-tie released, we only retained responses provided by parents of a child who had a tongue-tie release or respondents who had a tongue-tie release themselves. There were 49 total respondents but eight respondents were excluded from analysis due to not meeting the minimum age of 18 years ( n = 1), not having had their own or their child’s tongue-tie released ( n = 4) or identifying the person they knew with tongue-release as someone other than themselves or their child ( n = 3). This resulted in a final sample size of 41 participants, which included 10 (24.3%) adults who had made the decision to have their own tongue-tie released, and 31 (75.6%) parents who had had their child’s tongue-tie released. All of these respondents could accurately describe a tongue-tie. Results The responses to survey questions are detailed below according to the three main types of items on the survey: (a) sociodemographic characteristics; (b) questions related to the decision-making process; and (c) questions related to the experience of tongue-tie release. Sociodemographic characteristics There were no significant group differences in any of the sociodemographic characteristics between adults who had

had their own tongue-tie released and parents who had their child’s tongue-tie released. All 41 respondents were female, over half of whom (58.5%) were between 26 and 34 years of age, and married (92.7%). Twenty-seven (65.9%) of the 41 participants were from Australia, with remaining participants from United States ( n = 12), Canada ( n = 1) and India ( n = 1). Questions related to the decision-making process Table 1 shows responses to questions related to the decision-making process by group. The majority of participants ( n = 33; 82.5%) referred to an impact on function or mobility when asked to define tongue-tie. Six additional respondents (15%) described anatomical structure related to tongue-tie. Only one person did not refer to either function or anatomical structure of the tongue in their definition of tongue-tie, labelling it as a “deformity/ birth defect affecting many functions of the body”. In making the decision about whether or not to have a tongue-tie release, half of the adults (n = 5; 50%) who had a tongue-tie release themselves and just over half of parents who had their child’s tongue-tie released ( n = 17; 54.8%) reported that their decision was influenced by others. For adults who had had the release themselves, a range of people (i.e., partner, family, friends) and professionals (i.e., dentist) were listed as influencing their decision, with no more than one response each. For parents who had made the decision to have their child’s tongue-tie released, their partner was most frequently identified ( n = 6; 25%), followed by their dentist ( n = 4; 16.7%) or doctor ( n = 4; 16.7%). Three parents identified a lactation consultant within the “other” response. Only one parent identified a speech-language pathologist as someone who influenced their decision. Of the 10 adults who reported having a tongue-tie themselves, one (12.5%) identified speech as a primary reason and the remaining participants selected “other”. Respondents who selected “other” cited a combination of reasons including headaches ( n = 3), neck or jaw tension/ pain ( n = 3), or dental issues including teeth grinding ( n = 5). Additional factors that influenced their decision are reported in Table 1. Feeding difficulties were the primary reason cited for release by parents ( n = 21; 67.7%). Only four parents (12.9%) identified speech difficulties as a reason for choosing to have the tongue-tie released. When given the option to list additional factors influencing their decision, mothers identified painful nipples ( n = 8; 25.8%) most often. Additional factors are shown in Table 1. Given the focus in the literature on breastfeeding difficulties, we compared reasons cited by parents for tongue-tie release for children who had their procedure before ( n = 20) and after ( n = 10) 1 year of age. For children under 1, 18 (90%) parents cited feeding difficulties as the primary reason, whereas only 3 (30%) parents identified feeding difficulties for children >1 year of age. The main reason cited for children >1 year of age was speech difficulties, which was identified by 4 (40%) parents. Speech difficulties were not identified as a reason for any of the children who had their release prior to the age of <1. This pattern of responses across these two groups was significantly different, χ ² (2) = 13.029, p = 0.001. The process of deciding to undergo a medical procedure should be an informed one. The majority of respondents

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JCPSLP Volume 23, Number 1 2021

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