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Thesis advisor: Britt F. Pados / Background. Ankyloglossia, commonly known as tongue-tie, reduces tongue mobility through restriction of the lingual frenulum. A recent professional consensus notes that tongue-tie is one possible reason for breastfeeding challenges. Prevalence reporting of tongue-tie has been variable, and an understanding of which infants benefit most from treatment is unknown.Screening and treatment guidelines have not been developed, mainly due to low-level evidence in published research. Despite this, there has been a substantial increase in tongue-tie treatment via frenotomy in the last 15 years. Purpose. The purpose of this program of research was to improve our understanding of tongue- tie and its impact on infant feeding. Eight specific aims were developed to achieve this purpose: 1) identify the prevalence rate of anyloglossia in infants age birth through 12 months; 2) review and evaluate the diagnostic criteria used to diagnose ankyloglossia; 3) identify and summarize original research addressing the impact of ankyloglossia on infant feeding, comparing symptoms of problematic feeding before and after frenotomy; 4) review the quality of the feeding-related outcome measures and psychometric properties of the assessment tools used; 5) describe changes in problematic feeding symptoms, as measured by the NeoEAT, pre- and post-frenotomy; 6) explore the contribution of infant age to the magnitude of change in problematic feeding pre- and post-frenotomy; 7) describe changes in maternal symptoms pre- and post-frenotomy; and 8) evaluate the relationships between maternal symptoms and symptoms of problematic feedingpre- and post-frenotomy. Methods. First, we performed a systematic review and meta-analysis of the literature on tongue- tie to determine the prevalence of the anomaly in the infant population and critiqued the methods used to achieve tongue-tie diagnosis. Second, we identified and summarized original research addressing the impact of tongue-tie on infant feeding, comparing symptoms of problematic feeding before and after frenotomy. In this same study, we evaluated the psychometric properties of the assessment tools used in the published research. Next, we assessed maternal and infant symptoms of problematic feeding pre- and post-frenotomy. In this same study, we utilized a comprehensive evaluation of infant feeding symptoms using a validated measure. Results. Cumulatively, this dissertation research has identified symptoms in both mothers and their infants in the setting of tongue-tie. Each of the eight specific aims proposed for this dissertation were addressed. Specifically, through the meta-analysis and systematic review, we determined 1) prevalence of tongue-tie is higher than previously thought, affecting 8% of the infant population, 2) current screening tools for tongue-tie require psychometric evaluation, 3) LATCH scores and maternal self-efficacy improve following frenotomy but little is known about the effect of frenotomy on infant feeding, and 4) infant feeding has not been evaluated comprehensively or with a validated measure for babies with tongue-tie. The research study conducted in Chapter IV found that 5) infants with severe tongue-tie experienced significant improvements in problematic feeding symptoms following tongue-tie correction as measured by the NeoEAT, 6) regardless of infant age, improvements in symptoms of problematic feeding were seen post-frenotomy in babies with severe tongue-tie, 7) maternal symptoms previously thought to occur in the setting of tongue-tie improved following frenotomy (e.g., painful or difficult latch), and 8) symptoms that have not been assessed in earlier research also improved after tongue-tie correction (e.g., chewing on nipple, incomplete breast drainage, and over supply of breastmilk). Conclusions. The program of research in this dissertation has made meaningful contributions to the literature on tongue-tie. Through the production of the first meta-analysis of prevalence data, a thorough evaluation of the available research, and the determination of maternal and infant symptoms associated with tongue-tie, we have crafted recommendations for future research and recommendations for improvements in the clinical management of infants with this oral anomaly. / Thesis (PhD) — Boston College, 2021. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Introduction: The most common symptom of ankyloglossia is breastfeeding problems. Lately, more attention has been given to problems beyond infancy, like with speech and mobility. There is limited research done in that area though, and there is no research made comparing indication groups with each other.Aim: To investigate if there is a difference in the self-experienced benefit of the tongue-tie release, in relation to the indication for cutting the tongue-tie.Methods: A retrospective survey of all patients who underwent a tongue-tie release in Örebro county under a period of two years. The patient, or their caregiver if the patient was under 18 years old, were contacted for a telephone survey. 73 patients completed the survey.Results: The results demonstrated no significant difference in self-experienced benefit between the indication-groups. 88% of all patients included in the study experienced benefit, 98% of these patients had a primary (n=57) or secondary (n=6) symptom that got better. The remaining 2% (n=1) experienced benefit despite any symptom relief because of the possible future benefit. The 12% that did not experience benefit did not experience any symptom relief from the surgery.Conclusions: The self-experienced benefit after the tongue-tie release was high in general, without differences between the indication-groups. It turned out to be important to ask for other symptoms than just the primary to see the whole picture. More research with a larger study population is encouraged.

Bakgrund: Helamning rekommenderas de första sex månaderna och har många hälsomässiga fördelar för både moder och barn. Svårigheter vid amning kan kopplas till tidiga amningsstopp och kort tungband kan vara en orsak till dessa amningssvårigheter. Syfte: Syftet är att belysa mödrars erfarenheter av amningssvårigheter relaterat till kort tungband och av tungbandsklipp. Metod: Kvalitativ studie med induktiv ansats baserades på semistrukturerade intervjuer med tio informanter via video- eller telefonsamtal, strategiskt utvalda utifrån inklusions- och exklusionskriterier. Materialet analyserades med en tematisk innehållsanalys. Resultat: Mödrarnas erfarenheter av amningssvårigheter relaterat till kort tungband och tungbandsklipp kan visa sig som både fysiska eller psykiska symtom så som smärtande bröstvårtor och ångest. Flera av mödrarna upplevde att deras amningssvårigheter inte blev hörda eller uppmärksammade av vårdpersonalen samt att de upplevde ett bristande stöd. Flera upplevde också att det fanns en kunskapsbrist beträffande kort tungband inom vården och ett fåtal av mödrarna visste inte vad kort tungband var eller vad det innebar. Flera av mödrarna upplevde även att informationen kring själva tungbandsklippet var bristfällig samt vad de kunde vänta sig för resultat efteråt. Slutsats: Mödrar och barn med amningssvårigheter relaterat till kort tungband och tungbandsklipp får olika bemötande, bedömningar och åtgärder beroende på vilken kunskap som den vårdkontakt de möter besitter. Det finns ett behov av att arbeta fram en nationell handlingsplan för kort tungband hos barn för att alla ska få tillgång till samma vård. / Background: Exclusive breastfeeding is recommended the first six months of life and has many health benefits for both mother and child. Difficulties during breastfeeding can be associated with early breastfeeding cessation and tongue-tie can be one of the causes leading to breastfeeding difficulties.  Aim: The aim was to elucidate mothers’ experiences of breastfeeding difficulties in relation to tongue-tie and frenotomy.  Method: A qualitative inductive study based on semi-structured interviews with 10 informants via video- or telephone calls was conducted. Purposive sampling with inclusion- and exclusion criteria was chosen. Data was analyzed using a thematic content analysis.  Result: Mothers’ experiences of breastfeeding difficulties in relation to tongue-tie and frenotomy appear as both physical and psychological symptoms such as nipple pain and anxiety. Many of the mothers expressed that their difficulties were not heard or acknowledged by the health care staff and they also experienced a lack of support. Many of the mothers also experienced a lack of knowledge in the health care system regarding tongue-tie and a few of the mothers did not know what tongue-tie was or what it meant. Several of the mothers also experienced a lack of information regarding the frenotomy and what result they may expect afterwards.  Conclusion: Mothers and children with breastfeeding difficulties in relation to tongue-tie and frenotomy are treated and assessed differently depending on the knowledge of the health care staff. There is a need to develop a national careplan for children with tongue-tie so that all children have the same access to equal care

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