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The last two decades have seen increasing use of long-term ventilation (LTV) as an intervention in childhood. Children who use LTV have many risk factors for feeding and swallowing difficulties, including their underlying respiratory and/or neurological etiology, long hospitalizations, medical interventions, and limited exposure to oral feeding experiences. This review aimed to answer two questions: 1) 'What specific swallowing and feeding characteristics do these children experience?'; and 2) 'What impacts do these swallowing and feeding characteristics have on health status and quality of life?'. Texts were identified across bibliographic databases, reference lists, and grey literature. Studies were analyzed according to ventilation, feeding and swallowing, assessment and intervention, and quality of life parameters. Overall, 1919 papers were screened, with 31 papers included in the final data extraction process. A range of feeding and swallowing characteristics were observed, including oral secretion management difficulties, oral aversion, swallowing difficulties, and clinical signs of aspiration. Non-oral feeding was found to be the primary feeding method used. Little information on health status and quality of life was reported in scoping review texts. Children with LTV needs present with a range of feeding and swallowing concerns, and non-oral feeding is common. Further research is needed to understand the feeding and swallowing journey of this population. This will assist in future service planning and delivery, and in turn contribute to improving patient outcomes and quality of life.
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Transtornos de Deglutição , Deglutição , Qualidade de Vida , Respiração Artificial , Humanos , Transtornos de Deglutição/terapia , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/fisiopatologia , Criança , Deglutição/fisiologia , Respiração Artificial/efeitos adversos , Respiração Artificial/métodos , Pré-Escolar , Feminino , MasculinoRESUMO
BACKGROUND: Attainment inequalities exist for ethnic minority students graduating from higher education institutes (HEIs) in the UK. Previous research has investigated the outcomes and experiences of students from ethnic minority backgrounds on health and social care programmes. However, studies exploring ethnic minority speech and language therapy (SLT) students' experiences have only focused on international students and were conducted in Australia. No known studies exploring the experiences of both home-domiciled and international SLT students from ethnic minority backgrounds have been conducted in the UK. AIMS: To explore the experiences of home-domiciled and international ethnic minority students on a SLT training programme and to identify ways to improve these experiences. METHODS & PROCEDURES: All SLT students attending a pre-registration postgraduate course who identified as being from an ethnic minority background were invited to participate. Two focus groups, one for three international students and one for six home students, were conducted. Data were analysed using reflexive thematic analysis. OUTCOMES & RESULTS: Three themes were identified that illustrated students' current experiences and how experiences could be improved: (1) feeling an outsider, explores students' sense of belonging in SLT education; (2) finding ways to manage, describes the strategies used by students to cope with their experiences of marginalization, and how adopting these strategies impact on their well-being; and (3) promoting inclusion, explains how the training programme could be modified to improve the experience of ethnic minority students. CONCLUSIONS & IMPLICATIONS: A better understanding of the experiences of ethnic minority SLT students can help others to support them more effectively. The findings suggest that making changes to SLT training programmes could improve ethnic minority students' outcomes and experiences. These include: more training for staff and students, support groups for ethnic minority students, sharing lived experiences of students and experienced SLTs from ethnic minority backgrounds, and clearer ways of reporting racist incidents. International students would benefit from receiving more information on HEI support services and cultural practices in the UK. WHAT THIS PAPER ADDS: What is already known on this subject Previous studies have investigated the experiences of ethnic minority students on a range of HEI programmes, including those for students of physiotherapy and occupational therapy. The only studies investigating the experiences of ethnic minority SLT students are those exploring how international SLT students in Australia can be supported on professional placement. What this paper adds to the existing knowledge This study explores the experiences of home and international SLT students in the UK who identify as being from minority ethnic backgrounds. Findings suggest that these students feel like outsiders, affecting their sense of belonging. The need to find and implement strategies to manage their feelings of marginalization impacts on their well-being. What are the potential or actual clinical implications of this work? The findings suggest measures to promote the inclusion of ethnic minority SLT students to improve their experiences and support their well-being. These include more training for all staff and students and the creation of a 'lived experiences library' where students and experienced SLTs from ethnic minority backgrounds could share positive experiences as well as ways of dealing with challenges. Clearer ways of reporting racist incidents would be beneficial for all students. International students would benefit from receiving more information on HEI support services and cultural practices in the UK. It is important that ethnic minority SLT students are involved in developments that aim to improve their experiences.
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BACKGROUND: Swallowing impairment (dysphagia) and tracheostomy coexist. Research in this area has often provided an overview of dysphagia management as a whole, but there is limited information pertaining to specific dysphagia therapy in the tracheostomy population. The aim of this scoping review is to provide a detailed exploration of the literature with regard to dysphagia therapeutic interventions in adults with a tracheostomy. The scoping review will describe current evidence and thus facilitate future discussions to guide clinical practice. METHODS: A scoping review using the Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews guideline will be used. Ten electronic databases from inception to December 2023 and grey literature will be searched. From identified texts forward and backward citation chasing will be completed. Data extraction will compose of population demographics, aetiology and dysphagia therapy (type, design, dose and intensity). A number of citations and papers included in the scoping review will be presented visually. DISCUSSION: The scoping review aims to expand upon the existing literature in this field. A detailed description of the evidence is required to facilitate clinical discussions and develop therapeutic protocols in a tracheostomised population. The results of this scoping review will support future research in dysphagia therapy and provide the basis for the development of best practice guidelines. WHAT THIS PAPER ADDS: What is already known on this subject There is an abundance of evidence available regarding dysphagia therapy targeting impairments of the swallowing sequence in a variety of populations including stroke, head and neck cancer, progressive neurological conditions and critical illness. However, there is a paucity in the literature with regard to identifying dysphagia therapy for adults with a tracheostomy. What this study adds The study protocol aims to describe the methodological features that need to be extracted from existing studies to outline dysphagia therapy for adults with a tracheostomy. To the researchers' knowledge, this is the first study protocol to describe the methodological features of dysphagia therapy for people with a tracheostomy from the literature using a standardised approach (Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews and Meta-Analyses [PRISMA] guideline). This will ensure that the protocol is replicable for other researchers to use and demonstrates transparency in research methods. What are the clinical implications of this work? The development of a robust protocol is necessary in order to facilitate the scoping review to describe the current evidence and thus facilitate future discussions to guide clinical practice for speech and language therapists working with adults who have a tracheostomy and dysphagia. The publication of the scoping review protocol allows future clinical researchers in the area of tracheostomy and dysphagia management a blueprint with which to narrow their own research questions and it also enables replicability as the principles of good research practice dictate.
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Background: Digital stress refers to the stress resulting from persistent use of digital media. Given its major implications for well-being, it is crucial to explore how the use of digital media would contribute to the stress. Drawing on the frameworks of DSMT (i.e., using a digital device during social interactions) and perceived peer norms, we explored whether and how perceived peer norms of DSMT and adolescents' own DSMT were associated with digital stress. Method: Adolescents between the ages of 12 and 18 were recruited through the Qualtrics survey panels. A total of 2105 adolescents completed a one-time online survey (Mage = 15.39, S.D. = 1.82). Results: Path analysis revealed that all three self-DSMT variables (level, positive self-perception, negative self-perception) were associated with higher digital stress, with level and negative self-perception having stronger associations than did positive self-perception. Furthermore, peer DSMT level was related to higher digital stress both directly and indirectly through all three self-DSMT variables. Positive peer perception of DSMT was indirectly related to higher digital stress through higher self-DSMT level and more positive self-perception of DSMT, but was related to lower digital stress through reduced negative self-perception of DSMT. Negative peer perception of DSMT contributed to higher digital stress both directly and indirectly by intensifying teens' own negative perception of DSMT. Judging from the total-paths coefficients, all three peer norm variables were related to higher digital stress, with level having the largest coefficient, followed by negative peer perception and finally positive peer perception of DSMT. Discussion and conclusion: All three perceived peer norms of DSMT (level, positive perception, negative perception) had the potential to increase digital stress directly and/or via impacting teens' own engagement in and perceptions of DSMT, with perceived peer engagement and negative peer perception being the greater risk factors. At the individual level, a similar pattern emerged-self-DSMT level and negative self-perception had noticeably stronger associations with digital stress than did positive self-perception.
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Increasing use of paediatric long-term ventilation (LTV) has been reported around the world over the last two decades and it is anticipated that use of this medical intervention will continue to grow. Research has shown that children who use LTV have risk factors for feeding and swallowing difficulties which result in long-term reliance on non-oral feeding methods. This Patient and Public Involvement (PPI) activity explored experiences of parents of children with LTV on their children's feeding and swallowing journeys. Individual and group interviews with seven parents were conducted. Interview data was then analysed using content analysis. Families discussed a range of themes including impacts on their family, facilitators and barriers to feeding and swallowing journeys, speech and language therapy (SLT) support, their family's healthcare journey in relation to quality of life and future directions for research. This study highlighted potential key areas to explore when identifying ways to improve SLT care and research in feeding and swallowing for children who use LTV.
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BACKGROUND: The last three decades have seen a growth in the number of children requiring long-term ventilation. Children with long-term ventilation present with underlying respiratory and neurological conditions that place them at risk of feeding and swallowing difficulties. To date, a scoping review or systematic review investigating the feeding and swallowing outcomes of children with long-term ventilation needs has not been conducted. AIMS: This paper describes a protocol for a scoping review of the feeding and swallowing outcomes of children receiving long-term ventilation. METHODS: This scoping review protocol will utilize the Joanna Briggs Institute scoping review methodology guideline. Our review will focus on the feeding and swallowing outcomes of children aged 0 to 18 years with long-term ventilation needs. A full search strategy initially created by the authors and a research librarian was conducted on the PubMed database. Following this, pilot testing took place to determine discrepancies in eligibility criteria. A full search strategy will be conducted across several databases. A data extraction form has been developed by the authors and will be used during the scoping review process. DISCUSSION: This protocol has been created to provide a rigorous and comprehensive basis for undertaking a scoping review. All necessary steps have been completed in order to commence the scoping review. REGISTRATION: This scoping review protocol was registered on Open Science Framework on the 26th November 2021 (Registration DOI 10.17605/OSF.IO/NQBPD).
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Deglutição , Respiração Artificial , Humanos , Criança , Respiração Artificial/efeitos adversos , Respiração Artificial/métodos , Deglutição/fisiologia , Lactente , Pré-Escolar , Adolescente , Transtornos de Deglutição/terapia , Recém-Nascido , Revisões Sistemáticas como AssuntoRESUMO
INTRODUCTION: Eating, drinking and swallowing difficulties are commonly reported morbidities for individuals born with OA/TOF. This study aimed to determine the nature and prevalence of eating, drinking and oro-pharyngeal swallowing difficulties reported in this population. METHOD: A systematic review and meta-proportional analysis were conducted (PROSPERO: CRD42020207263). MEDLINE, EMBASE, CINAHL, Pubmed, Scopus, Web of Science databases and grey literature were searched. Quantitative and qualitative data were extracted relating to swallow impairment, use of mealtime adaptations and eating and drinking-related quality of life. Quantitative data were summarised using narrative and meta-proportional analysis methods. Qualitative data were synthesised using a meta-aggregation approach. Where quantitative and qualitative data described the same phenomenon, a convergent segregated approach was used to synthesise data. RESULTS: Sixty-five studies were included. Six oro-pharyngeal swallow characteristics were identified, and pooled prevalence calculated: aspiration (24%), laryngeal penetration (6%), oral stage dysfunction (11%), pharyngeal residue (13%), nasal regurgitation (7%), delayed swallow initiation (31%). Four patient-reported eating/drinking difficulties were identified, and pooled prevalence calculated: difficulty swallowing solids (45%), difficulty swallowing liquids (6%), odynophagia (30%), coughing when eating (38%). Three patient-reported mealtime adaptations were identified, and pooled prevalence calculated: need for water when eating (49%), eating slowly (37%), modifying textures (28%). Mixed methods synthesis of psychosocial impacts identified 34% of parents experienced mealtime anxiety and 25% report challenging mealtime behaviours reflected in five qualitative themes: fear and trauma associated with eating and drinking, isolation and a lack of support, being aware and grateful, support to cope and loss. CONCLUSIONS: Eating and drinking difficulties are common in adults and children with repaired OA/TOF. Oro-pharyngeal swallowing difficulties may be more prevalent than previously reported. Eating, drinking and swallowing difficulties can impact on psychological well-being and quality of life, for the individual and parents/family members. Long-term, multi-disciplinary follow-up is warranted.
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Transtornos de Deglutição , Atresia Esofágica , Humanos , Transtornos de Deglutição/etiologia , Atresia Esofágica/cirurgia , Fístula Traqueoesofágica/cirurgia , Qualidade de Vida , Ingestão de Alimentos/fisiologia , Ingestão de Líquidos/fisiologiaRESUMO
Background: Dysphagia is common in adults living with neuromuscular disease (NMD). Increased life expectancy, secondary to improvements in standards of care, requires the recognition and treatment of dysphagia with an increased priority. Evidence to support the establishment of healthcare pathways is, however, lacking. The experiences of people living with NMD (pplwNMD) and their caregivers are valuable to guide targeted, value-based healthcare. Objective: To generate preliminary considerations for neuromuscular dysphagia care and future research in the United Kingdom, based on the experiences of those living with, or caring for, people with NMD. Methods: Two surveys (one for adults living with NMD and dysphagia, and a second for caregivers) were co-designed with an advisory group of people living with NMD. Surveys were electronically distributed to adults living with NMD and their caregivers between 18th May and 26th July 2020. Distribution was through UK disease registries, charity websites, newsletters, and social media. Results: Adults living with NMD receive little information or education that they are likely to develop swallowing difficulties. Most respondents report wanting this information prior to developing these difficulties. Difficulties with swallowing food and medication are common in this group, and instrumental assessment is considered a helpful assessment tool. Both adults living with NMD and caregivers want earlier access to neuromuscular swallowing specialists and training in how best to manage their difficulties. Conclusions: Improvement is needed in the dysphagia healthcare pathway for adults living with NMD to help mitigate any profound physical and psychological consequences that may be caused by dysphagia. Education about swallowing difficulties and early referral to a neuromuscular swallowing specialist are important to pplwNMD and their caregivers. Further research is required to better understand the experiences of pplwNMD and their caregivers to inform the development of dysphagia healthcare pathways.
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Transtornos de Deglutição , Doenças Neuromusculares , Adulto , Humanos , Transtornos de Deglutição/etiologia , Cuidadores , Doenças Neuromusculares/complicações , Reino Unido , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To assess the clinical effectiveness of two speech and language therapy approaches versus no speech and language therapy for dysarthria in people with Parkinson's disease. DESIGN: Pragmatic, UK based, multicentre, three arm, parallel group, unblinded, randomised controlled trial. SETTING: The speech and language therapy interventions were delivered in outpatient or home settings between 26 September 2016 and 16 March 2020. PARTICIPANTS: 388 people with Parkinson's disease and dysarthria. INTERVENTIONS: Participants were randomly assigned to one of three groups (1:1:1): 130 to Lee Silverman voice treatment (LSVT LOUD), 129 to NHS speech and language therapy, and 129 to no speech and language therapy. LSVT LOUD consisted of four, face-to-face or remote, 50 min sessions each week delivered over four weeks. Home based practice activities were set for up to 5-10 mins daily on treatment days and 15 mins twice daily on non-treatment days. Dosage for the NHS speech and language therapy was determined by the local therapist in response to the participants' needs (estimated from prior research that NHS speech and language therapy participants would receive an average of one session per week over six to eight weeks). Local practices for NHS speech and language therapy were accepted, except for those within the LSVT LOUD protocol. Analyses were based on the intention to treat principle. MAIN OUTCOME MEASURES: The primary outcome was total score at three months of self-reported voice handicap index. RESULTS: People who received LSVT LOUD reported lower voice handicap index scores at three months after randomisation than those who did not receive speech and language therapy (-8.0 points (99% confidence interval -13.3 to -2.6); P<0.001). No evidence suggests a difference in voice handicap index scores between NHS speech and language therapy and no speech and language therapy (1.7 points (-3.8 to 7.1); P=0.43). Patients in the LSVT LOUD group also reported lower voice handicap index scores than did those randomised to NHS speech and language therapy (-9.6 points (-14.9 to -4.4); P<0.001). 93 adverse events (predominately vocal strain) were reported in the LSVT LOUD group, 46 in the NHS speech and language therapy group, and none in the no speech and language therapy group. No serious adverse events were recorded. CONCLUSIONS: LSVT LOUD was more effective at reducing the participant reported impact of voice problems than was no speech and language therapy and NHS speech and language therapy. NHS speech and language therapy showed no evidence of benefit compared with no speech and language therapy. TRIAL REGISTRATION: ISRCTN registry ISRCTN12421382.