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1.
Dysphagia ; 2024 Jan 05.
Artigo em Inglês | MEDLINE | ID: mdl-38180625

RESUMO

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.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38923224

RESUMO

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.

3.
Artigo em Inglês | MEDLINE | ID: mdl-38533839

RESUMO

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.

4.
Nature ; 541(7636): 188-190, 2017 01 12.
Artigo em Inglês | MEDLINE | ID: mdl-28052055

RESUMO

Penitentes are snow and ice features formed by erosion that, on Earth, are characterized by bowl-shaped depressions several tens of centimetres across, whose edges grade into spires up to several metres tall. Penitentes have been suggested as an explanation for anomalous radar data on Europa, but until now no penitentes have been identified conclusively on planetary bodies other than Earth. Regular ridges with spacings of 3,000 to 5,000 metres and depths of about 500 metres with morphologies that resemble penitentes have been observed by the New Horizons spacecraft in the Tartarus Dorsa region of Pluto (220°-250° E, 0°-20° N). Here we report simulations, based upon a recent model representing conditions on Pluto, in which deepening penitentes reproduce both the tri-modal (north-south, east-west and northeast-southwest) orientation and the spacing of the ridges of this bladed terrain. At present, these penitentes deepen by approximately one centimetre per orbital cycle and grow only during periods of relatively high atmospheric pressure, suggesting a formation timescale of several tens of millions of years, consistent with crater ages. This timescale implies that the penitentes formed from initial topographic variations of no more than a few tens of metres, consistent with Pluto's youngest terrains.

5.
Dev Med Child Neurol ; 65(9): 1199-1205, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-36798989

RESUMO

AIM: To agree wording of level descriptors for a measure of functional outcome of children's eating and drinking. METHOD: An online, modified Delphi method was used to gather feedback on current level descriptor wording and generate rewording suggestions. Thirty speech and language therapists, working in a variety of settings and geographical locations, were invited to be part of the Delphi expert panel. Content analysis was used to evaluate participants' comments and develop consensus level descriptors. Consensus for acceptable wording was set at 80% agreement. Face validity was assessed using 5-point Likert scales. RESULTS: Nineteen expert speech and language therapists (median experience 18 years) completed round one; 15 out of 19 completed round two. Level descriptor rating reached 80% agreement in two rounds. Additionally, 93% of participants agreed the scale would accurately capture change in their setting, with 87% likely to use the scale in practice. INTERPRETATION: This study has produced agreed wording for a functional measure of eating and drinking activity suitable for use with paediatrics feeding disorders, regardless of disease aetiology, presentation, age, or setting. Potential for widespread use is supported. Further evaluation of the tool's reliability and validity is required.


Assuntos
Consenso , Humanos , Criança , Reprodutibilidade dos Testes , Técnica Delphi
6.
Health Expect ; 26(2): 613-629, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36647692

RESUMO

INTRODUCTION: Using co-design processes, we aimed to develop an evidence-based decision guide for family carers and hospital professionals to support decision-making about eating and drinking for hospital patients with severe dementia. METHODS: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co-design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co-design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. RESULTS: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision-making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co-design groups developed the aims of the decision guide to support conversations and shared decision-making processes in acute hospitals, and help people reach evidence-based decisions. It was designed to clarify decision-making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person-centred care, best-interests decision-making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. CONCLUSION: We used rigorous and transparent processes to co-design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real-world impacts. PATIENT OR PUBLIC CONTRIBUTION: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co-design workshops. PPI members helped design study procedures and materials and prepare this manuscript.


Assuntos
Demência , Humanos , Demência/psicologia , Cuidadores/psicologia , Inglaterra , Hospitais
7.
J Adolesc ; 95(4): 811-823, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36793203

RESUMO

INTRODUCTION: Phone use during face-to-face interactions (i.e., digital social multitasking [DSMT]) is a growing activity among adolescents. DSMT appears to be a risk factor for problematic phone use, but little is known about why adolescents engage in DSMT and how different motives of DSMT would be associated with problematic phone use. Drawing on the framework of DSMT and the uses and gratifications theory, this study explored (1) the motives of adolescent DSMT and (2) the direct and indirect relationships between DSMT motives and problematic phone use via the level and perception of DSMT. METHOD: The study involved survey data from 517 adolescents in the United States recruited through the Qualtrics panels (Mage = 14.83, SD = 1.93) in the fall of 2020. The sample's gender and racial/ethnic distributions were nationally representative. RESULTS: We developed a scale measuring adolescent DSMT motives, which showed that adolescents engaged in DSMT because of enjoyment and connection, boredom, information, and habitual use. The motive of habitual use was associated with problematic phone use both directly and indirectly via level of DSMT and perceived distraction caused by DSMT. The information motive was directly associated with problematic phone use, while the boredom motive was indirectly associated with problematic phone use via perceived distraction. Conversely, the motive of enjoyment and connection was related to lower problematic phone use both directly and indirectly via lower perceived distraction. CONCLUSION: The study identifies DSMT-related risk and protective factors for problematic phone use. The findings should help adults recognize adaptive versus maladaptive forms of DSMT among adolescents and develop proper guidance and intervention.


Assuntos
Comportamento do Adolescente , Comportamento Aditivo , Telefone Celular , Adulto , Humanos , Adolescente , Inquéritos e Questionários , Motivação
8.
Artigo em Inglês | MEDLINE | ID: mdl-37936550

RESUMO

BACKGROUND: We explore the theoretical and methodological aspects of decolonising speech and language therapy (SLT) higher education in the United Kingdom. We begin by providing the background of the Rhodes Must Fall decolonisation movement and the engagement of South African SLTs in the decoloniality agenda. We then discuss the evolution of decoloniality in SLT, highlighting its focus on reimagining the relationships between participants, students, patients and the broader world. OBJECTIVE: The primary objective of this discussion is to fill a gap in professional literature regarding decoloniality in SLT education. While there is limited research in professional journals, social media platforms have witnessed discussions on decolonisation in SLT. This discussion aims to critically examine issues such as institutional racism, lack of belonging, inequitable services and limited diversity that currently affect the SLT profession, not just in the United Kingdom but globally. METHODS: The methods employed in this research involve the engagement of SLT academics in Critical conversations on decolonisation. These conversations draw on reflexivity and reflexive interpretation, allowing for a deeper understanding of the relationship between truth, reality, and the participants in SLT practice and education. The nature of these critical conversations is characterised by their chaotic, unscripted and fluid nature, which encourages the open discussion of sensitive topics related to race, gender, class and sexuality. DISCUSSION POINTS: We present our reflections as academics who participated in the critical conversations. We explore the discomfort experienced by an academic when engaging with decolonisation, acknowledging white privilege, and the need to address fear and an imposter syndrome. The second reflection focuses on the experiences of white academics in grappling with their complicity in a system that perpetuates racism and inequality. It highlights the need for self-reflection, acknowledging white privilege and working collaboratively with colleagues and students toward constructing a decolonised curriculum. Finally, we emphasise that while action is crucial, this should not undermine the potential of dialogue to change attitudes and pave the way for practical implementation. The paper concludes by emphasising the importance of combining dialogue with action and the need for a nuanced understanding of the complexities involved in decolonising SLT education. CONCLUSION: Overall, this paper provides a comprehensive overview of the background, objectives, methods and key reflections related to the decolonisation of SLT higher education in the United Kingdom. It highlights the challenges, discomfort and responsibilities faced by academics in addressing decoloniality and emphasizes the importance of ongoing critical conversations and collective action in effecting meaningful change. WHAT THIS PAPER ADDS: What is already known on this subject Prior to this paper, it was known that the decolonial turn in speech and language therapy (SLT) was a recent focus, building on a history of professional transformation in South Africa. However, there was limited literature on decoloniality in professional journals, with most discussions happening on social media platforms. This paper aims to contribute to the literature and provide a critical conversation on decolonising SLT education, via the United Kingdom. What this paper adds to existing knowledge This paper adds a critical conversation on decolonising SLT higher education. It explores theoretical and methodological aspects of decoloniality in the profession, addressing issues such as institutional racism, lack of sense of belonging, inequitable services and limited diversity. The paper highlights the discomfort experienced by academics in engaging with decolonisation and emphasizes the importance of reflection, collaboration and open dialogue for meaningful change. Notably we foreground deimperialisation (vs. decolonisation) as necessary for academics oriented in/with the Global North so that both processes enable each other. Deimperialisation is work that focuses the undoing of privilege exercised by academics in/with the Global North not only for localising their research and education agenda but checking their rite of passage into the lives of those in the Majority World. What are the potential or actual clinical implications of this work? The paper highlights the need for SLT practitioners and educators to critically examine their practices and curricula to ensure they are inclusive, decolonised and responsive to the diverse needs of communities. The discussions emphasise the importance of addressing institutional racism and promoting a sense of belonging for research participants, SLT students and patients. This paper offers insights and recommendations that can inform the development of more equitable and culturally responsive SLT services and education programmes.

9.
J Aging Soc Policy ; : 1-15, 2023 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-37365764

RESUMO

Family caregivers to persons living with a chronic or disabling condition often report disruption to their employment. Employment disruption can cause long-term financial difficulty and psychological distress for caregivers, high costs for employers, and exacerbates social inequities. In this commentary, we describe a community initiative to better support employees who are caregivers conducted with nonprofit employers in San Antonio, located in the central Texas region of the United States. This initiative aimed to raise awareness among local employers about the challenges employees face in balancing employment and caregiving. This led to the co-development of a pledge to guide employer efforts to support employees who are caregivers. This initiative represents a first step to mobilize employers as stakeholder allies to improve workplace support for family caregivers. The authors draw on the Shilton Model of Policy Advocacy to make the case that the mobilization of employers as advocacy stakeholders can hasten the advancement of policies that enable family caregivers to balance both roles. Further, the implementation of organization-level changes, in addition to state and federal policy changes, to support employed caregivers by employers is consistent with recommendations of the recently published National Strategy to Support Family Caregivers.

10.
Int J Lang Commun Disord ; 57(1): 6-20, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34510665

RESUMO

BACKGROUND: National UK guidance makes recommendations for speech and language therapy staffing levels in critical care and rehabilitation settings. Traumatic spinal cord injury patients often require admission primarily to critical care services within a major trauma centre prior to transfer to a specialist spinal injury unit but may not receive similar levels of care. Dysphagia and communication difficulties are recognised features of cervical spinal cord injury; however, little is known about access to speech and language therapy services to provide rehabilitation and improve outcomes. AIMS: The aim of this study was to compare the workforce and clinical practices of speech and language therapy services in eight spinal injury units and four major trauma centres in England through an online survey. METHODS & PROCEDURES: An online survey was created with 26 multiple-choice questions across seven sub-sections, with options for free-text comments. These were sent to a named speech and language therapy contact at each of the specified units. Responses were uploaded into Excel for analyses, which included descriptive statistics and analysis of themes. OUTCOMES & RESULTS: Responses were received from 92% (11/12) speech and language therapy services invited, which included seven out of eight spinal injury units and all four major trauma centres. No units met national staffing recommendations. Staff in spinal injury units provided an average of 27 h per week input to the unit compared to 80 h in a major trauma centre. Despite caseload variations, speech and language range of therapy involvement and prioritisation process were equivalent. Access to instrumental assessment varied, with less use of Fibreoptic Endoscopic Evaluation of Swallowing in spinal injury units despite its clinical value to the spinal cord injury caseload. CONCLUSIONS & IMPLICATIONS: Speech and language therapy services delivering post-acute and long-term rehabilitation to spinal cord injury patients are limited by their resources and capacity, which restricts the level of therapy delivered to patients. This may have an impact on clinical outcomes for communication and swallowing impairments. Further evidence is needed of the interventions delivered by speech and language therapists and outcomes will be beneficial alongside benchmarking similar services. WHAT THIS PAPER ADDS: What is already known on this subject In England, people who sustain a spinal cord injury are admitted to a major trauma centre prior to transfer to a specialist spinal injury unit. Dysphagia and communication impairments are recognised as a complication of cervical spinal cord injury and benefit from speech and language therapy intervention. National recommendations exist for staffing levels, expertise and competencies for speech and language therapists working in critical care and rehabilitation units. What this study adds This study identified variations in the levels of speech and language therapy staffing, seniority, service delivery and access to instrumental assessments for dysphagia between major trauma centres and spinal injury units. None of the services complied with national staffing recommendations. Clinical implications of this study Speech and language therapy services in spinal injury units are often available part-time or have limited access to diagnostic tools which limits the range and intensity of rehabilitation input available. This has clinical implications for outcomes for swallowing and communication as well as long-term consequences for integrating back into community.


Assuntos
Transtornos de Deglutição , Traumatismos da Medula Espinal , Traumatismos da Coluna Vertebral , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/terapia , Inglaterra , Humanos , Terapia da Linguagem , Fala , Fonoterapia , Traumatismos da Medula Espinal/complicações , Traumatismos da Coluna Vertebral/complicações , Centros de Traumatologia
11.
Vis Neurosci ; 38: E013, 2021 09 15.
Artigo em Inglês | MEDLINE | ID: mdl-34521486

RESUMO

Retinomotor movements include elongation and contraction of rod and cone photoreceptors, and mass migration of melanin-containing pigment granules (melanosomes) of the retinal pigment epithelium (RPE) within the eyes of fish, frogs, and other lower vertebrates. Eyes of these animals do not contain dilatable pupils; therefore the repositioning of the rods and cones and a moveable curtain of pigment granules serve to modulate light intensity within the eye. RPE from sunfish (Lepomis spp.) can be isolated from the eye and dissociated into single cells, allowing in vitro studies of the cytoskeletal and regulatory mechanisms of organelle movement. Pigment granule aggregation from distal tips of apical projections into the cell body can be triggered by the application of underivatized cAMP, and dispersion is effected by cAMP washout in the presence of dopamine. While the phenomenon of cAMP-dependent pigment granule aggregation in isolated RPE was described many years ago, whether cAMP acts through the canonical cAMP-PKA pathway to stimulate motility has never been demonstrated. Here, we show that pharmacological inhibition of PKA blocks pigment granule aggregation, and microinjection of protein kinase A catalytic subunit triggers pigment granule aggregation. Treatment with a cAMP agonist that activates the Rap GEF, Epac (Effector protein activated by cAMP), had no effect on pigment granule position. Taken together, these results confirm that cAMP activates RPE pigment granule motility by the canonical cAMP-PKA pathway. Isolated RPE cells labeled with antibodies against PKA RIIα and against PKA-phosphorylated serine/threonine amino acids show diffuse, punctate labeling throughout the RPE cell body and apical projections. Immunoblotting of RPE lysates using the anti-PKA substrate antibody demonstrated seven prominent bands; two bands in particular at 27 and 64 kD showed increased levels of phosphorylation in the presence of cAMP, indicating their phosphorylation could contribute to the pigment granule aggregation mechanism.


Assuntos
Proteínas Quinases Dependentes de AMP Cíclico , Perciformes , Animais , Células Epiteliais , Epitélio Pigmentado da Retina , Pigmentos da Retina
12.
Age Ageing ; 50(5): 1820-1828, 2021 09 11.
Artigo em Inglês | MEDLINE | ID: mdl-34120181

RESUMO

BACKGROUND: Eating and drinking problems are common among people living with later-stage dementia, yet few studies have explored their perspectives. OBJECTIVE: This study aimed to explore how people living with mild dementia understand possible future eating and drinking problems and their perspectives on assistance. DESIGN: Qualitative study using semi-structured interviews. SETTING: Community. METHODS: We conducted semi-structured interviews with 19 people living with mild dementia. Interviews were transcribed verbatim and analysed thematically. RESULTS: Five themes were identified: (i) awareness of eating and drinking problems; (ii) food and drink representing an individual's identity and agency; (iii) delegating later decisions about eating and drinking to family carers; (iv) acceptability of eating and drinking options; and (v) eating and drinking towards the end of life. For people living with mild dementia, possible later eating and drinking problems could feel irrelevant and action may be postponed until they occur. Fears of being a burden to family and of being treated like a child may explain reluctance to discuss such future problems. People living with mild dementia might wish to preserve their agency and maintain good quality of life, rather than be kept alive at later stages by artificial nutrition and hydration. CONCLUSION: For people with mild dementia, eating and drinking problems may seem unrelated to them and so get left undiscussed. Negative connotations regarding eating and drinking problems may hinder the discussion. The optimal time to discuss possible future problems with eating and drinking with people with mild dementia may need an individual approach.


Assuntos
Demência , Qualidade de Vida , Cuidadores , Demência/diagnóstico , Demência/terapia , Humanos , Estado Nutricional , Pesquisa Qualitativa
13.
Cochrane Database Syst Rev ; 8: CD013503, 2021 08 13.
Artigo em Inglês | MEDLINE | ID: mdl-34387363

RESUMO

BACKGROUND: The balance of benefits and harms associated with enteral tube feeding for people with severe dementia is not clear. An increasing number of guidelines highlight the lack of evidenced benefit and potential risks of enteral tube feeding. In some areas of the world, the use of enteral tube feeding is decreasing, and in other areas it is increasing. OBJECTIVES: To assess the effectiveness and safety of enteral tube feeding for people with severe dementia who develop problems with eating and swallowing or who have reduced food and fluid intake. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases and two trials registers on 14 April 2021. SELECTION CRITERIA: We included randomised controlled trials (RCTs), or controlled non-randomised studies. Our population of interest was adults of any age with a diagnosis of primary degenerative dementia of any cause, with severe cognitive and functional impairment, and poor nutritional intake. Eligible studies evaluated the effectiveness and complications of enteral tube feeding via a nasogastric or gastrostomy tube, or via jejunal post-pyloric feeding, in comparison with standard care or enhanced standard care, such as an intervention to promote oral intake. Our primary outcomes were survival time, quality of life, and pressure ulcers. DATA COLLECTION AND ANALYSIS: Three review authors screened citations and two review authors assessed full texts of potentially eligible studies against inclusion criteria. One review author extracted data, which were then checked independently by a second review author. We used the 'Risk Of Bias In Non-randomised Studies of Interventions' (ROBINS-I) tool to assess the risk of bias in the included studies. Risk of confounding was assessed against a pre-agreed list of key potential confounding variables. Our primary outcomes were survival time, quality of life, and pressure ulcers. Results were not suitable for meta-analysis, so we presented them narratively. We presented results separately for studies of percutaneous endoscopic gastrostomy (PEG) feeding, nasogastric tube feeding and studies using mixed or unspecified enteral tube feeding methods. We used GRADE methods to assess the overall certainty of the evidence related to each outcome for each study. MAIN RESULTS: We found no eligible RCTs. We included fourteen controlled, non-randomised studies. All the included studies compared outcomes between groups of people who had been assigned to enteral tube feeding or oral feeding by prior decision of a healthcare professional. Some studies controlled for a range of confounding factors, but there were high or very high risks of bias due to confounding in all studies, and high or critical risks of selection bias in some studies. Four studies with 36,816 participants assessed the effect of PEG feeding on survival time. None found any evidence of effects on survival time (low-certainty evidence). Three of four studies using mixed or unspecified enteral tube feeding methods in 310 participants (227 enteral tube feeding, 83 no enteral tube feeding) found them to be associated with longer survival time. The fourth study (1386 participants: 135 enteral tube feeding, 1251 no enteral tube feeding) found no evidence of an effect. The certainty of this body of evidence is very low. One study of PEG feeding (4421 participants: 1585 PEG, 2836 no enteral tube feeding) found PEG feeding increased the risk of pressure ulcers (moderate-certainty evidence). Two of three studies reported an increase in the number of pressure ulcers in those receiving mixed or unspecified enteral tube feeding (234 participants: 88 enteral tube feeding, 146 no enteral tube feeding). The third study found no effect (very-low certainty evidence).  Two studies of nasogastric tube feeding did not report data on survival time or pressure ulcers. None of the included studies assessed quality of life. Only one study, using mixed methods of enteral tube feeding, reported on pain and comfort, finding no difference between groups. In the same study, a higher proportion of carers reported very heavy burden in the enteral tube feeding group compared to no enteral tube feeding. Two studies assessed the effect of nasogastric tube feeding on mortality (236 participants: 144 nasogastric group, 92 no enteral tube feeding). One study of 67 participants (14 nasogastric, 53 no enteral tube feeding) found nasogastric feeding was associated with increased mortality risk. The second study found no difference in mortality between groups. The certainty of this evidence is very low. Results on mortality for those using PEG or mixed methods of enteral tube feeding were mixed and the certainty of evidence was very low. There was some evidence from two studies for enteral tube feeding improving nutritional parameters, but this was very low-certainty evidence. Five studies reported a variety of harm-related outcomes with inconsistent results. The balance of evidence suggested increased risk of pneumonia with enteral tube feeding. None of the included studies assessed behavioural and psychological symptoms of dementia. AUTHORS' CONCLUSIONS: We found no evidence that tube feeding improves survival; improves quality of life; reduces pain; reduces mortality; decreases behavioural and psychological symptoms of dementia; leads to better nourishment; improves family or carer outcomes such as depression, anxiety, carer burden, or satisfaction with care; and no indication of harm. We found some evidence that there is a clinically significant risk of pressure ulcers from enteral tube feeding. Future research should focus on better reporting and matching of control and intervention groups, and clearly defined interventions, measuring all the outcomes referred to here.


Assuntos
Demência/complicações , Nutrição Enteral , Desnutrição/prevenção & controle , Adulto , Cuidadores , Gastrostomia , Humanos , Intubação Gastrointestinal/efeitos adversos , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do Tratamento
14.
Dysphagia ; 36(2): 281-292, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-32445060

RESUMO

Dysphagia is common after stroke, leading to adverse outcome. The Effortful Swallow (ES) is recommended to improve swallowing but it is not known if dysphagic patients can increase muscle activity during the exercise or if age affects performance. Providing surface electromyographic (sEMG) biofeedback during dysphagia therapy may enhance exercise completion, but this has not been investigated and the technique's acceptability to patients is not known. Aims: To determine if age or post-stroke dysphagia affect the ability to increase submental muscle activity during the ES, if sEMG biofeedback improves ES performance and if sEMG is an acceptable addition to therapy. In a Phase I study submental sEMG amplitudes were measured from 15 people with dysphagia < 3 months post-stroke and 85 healthy participants aged 18-89 years during swallowing (NS) and when they performed the ES with and without sEMG biofeedback. Participant feedback was collected via questionnaire. Measurements were compared with repeated measures ANOVA and age effects were examined with linear regression. Both groups produced significantly greater muscle activity for the ES than NS (p < 0.001) and significantly increased activity with biofeedback (p < 0.001) with no effect of age. Participant feedback about sEMG was very positive; over 98% would be happy to use it regularly. The ES is a physiologically beneficial dysphagia exercise, increasing muscle activity during swallowing. sEMG biofeedback further enhances performance and is considered an acceptable technique by patients. These findings support the potential application of sEMG biofeedback and the ES in dysphagia therapy in stroke, justifying further investigation of patient outcome.


Assuntos
Transtornos de Deglutição , Envelhecimento Saudável , Biorretroalimentação Psicológica , Deglutição , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/terapia , Eletromiografia , Humanos
15.
J Adv Nurs ; 77(2): 664-680, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33249602

RESUMO

AIMS: To synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life. DESIGN: Systematic review and narrative synthesis of qualitative studies. DATA SOURCES: MEDLINE, Embase, PsycINFO, CINAHL. REVIEW METHODS: Databases were searched for qualitative studies from January 2000-February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis. RESULTS: Twenty studies were included; 15 explored the views of practitioners working with people living with dementia in long-term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with 'the right thing to do'; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia. CONCLUSION: The complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate. IMPACT: This review summarizes practitioners and families' experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.


Assuntos
Demência , Hidratação , Apoio Nutricional , Qualidade de Vida , Assistência Terminal , Adulto , Idoso , Austrália , Morte , Humanos , Estudos Retrospectivos
16.
J Youth Adolesc ; 50(12): 2456-2471, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33991272

RESUMO

Most existing research assumes "phone use during face-to-face interactions" to be psychosocially detrimental. Drawing on the digital social multitasking framework, this study explored not only the negative but also positive implications of the behavior. A sample of 517 adolescents (Mage = 14.83, S.D. = 1.93; 50% female) recruited through the Qualtrics panel completed an online survey. Results showed that adolescents' and their friend's digital social multitasking were both associated with (1) greater perceived efficiency, which, in turn, was associated with competence need satisfaction, and (2) greater perceived connection, which, in turn, was associated with better friendship quality, autonomy need satisfaction, and relatedness need satisfaction. Adolescents' own multitasking also had an indirect, negative relationship with friendship quality through perceived distraction, but friend's multitasking did not compromise friendship quality. The study provides a more balanced picture, showing that despite the potential harm of digital social multitasking, adolescents' phone use during face-to-face peer interactions also involves potential benefits for teens' psychosocial well-being.


Assuntos
Comportamento do Adolescente , Amigos , Adolescente , Feminino , Humanos , Relações Interpessoais , Masculino , Grupo Associado , Percepção , Satisfação Pessoal
17.
BMC Cancer ; 20(1): 360, 2020 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-32349693

RESUMO

BACKGROUND: Dysphagia or difficulty in swallowing affects quality of life for most patients with head and neck cancer. SIP SMART - [Swallowing Intervention Package: Self-Monitoring, Assessment, Rehabilitation Training] aims to improve post-treatment swallowing outcomes through a targeted and tailored pre-treatment intervention. This feasibility study assessed 1) recruitment and retention, 2) patient acceptability of randomisation and participation, 3) patient adherence, and 4) sought to identify a suitable primary outcome for a definitive trial, including sample size estimation. METHODS: This two-arm parallel group non-blinded randomised feasibility trial took place within a head and neck centre at a teaching hospital in London, UK. Patients newly diagnosed with stage III/IV head and neck cancer were recruited and underwent 6-month follow-up. Patients were randomised to SIP-SMART or usual care via an online web-based system. SIP SMART comprised two 45-min consultations including a baseline clinical and instrumental swallowing assessment, relevant educational information, targeted swallowing exercises, and specific behaviour change strategies to increase exercise adherence. Usual care comprised a single session including a baseline clinical assessment and generic information about the likely impact of treatment on swallowing. RESULTS: A total of 106 patients were identified at pre-screening, 70 were assessed for eligibility. Twenty-six patients did not meet eligibility criteria [0.37, 95% CI 0.27 to 0.49]. Five of 44 [0.11, 95% CI 0.05 to 0.24] eligible patients were not approached by researchers during clinic. Seven [0.18, 95% CI 0.08 to 0.33] of the 39 approached declined participation. Target recruitment (32 consented patients) was achieved within the timeframe. At 6-months 29/32 [0.91, 95% CI 0.76 to 0.97] patients remained in the trial. Acceptability of randomisation and participation in the intervention was favourable, and adherence to the exercises exceeded the pre-defined 35% minimum criterion. The MD Anderson Dysphagia Inventory swallow related quality of life measure was selected as the most suitable primary outcome for sample size estimation. No adverse effects arose from the intervention, or study participation. CONCLUSIONS: A definitive trial of the SIP SMART intervention compared to usual care is feasible and can be undertaken with patients with head and neck cancer treated within the NHS. TRIAL REGISTRATION: ISRCTN40215425, registered retrospectively.


Assuntos
Transtornos de Deglutição/reabilitação , Terapia por Exercício/métodos , Neoplasias de Cabeça e Pescoço/reabilitação , Transtornos de Deglutição/fisiopatologia , Transtornos de Deglutição/terapia , Intervenção Educacional Precoce , Estudos de Viabilidade , Feminino , Seguimentos , Neoplasias de Cabeça e Pescoço/fisiopatologia , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente , Prognóstico , Qualidade de Vida , Estudos Retrospectivos
18.
J Eukaryot Microbiol ; 67(2): 263-267, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31872522

RESUMO

Choanoflagellates exist as both single-celled and colonial forms and filter-feed by generating water currents using a single apical flagellum. Hydrodynamic modeling studies have differed in predictions of whether single cells or colonies produce greater fluid flow to enhance feeding, and a recent study reported no increase in feeding efficiency of stalked colonies of choanoflagellates compared with single cells. We report that rosette colonies of Salpingoeca rosetta demonstrate higher rates of food vacuole formation compared with unicellular, slow swimmers.


Assuntos
Coanoflagelados/fisiologia , Hidrodinâmica , Natação , Vacúolos/fisiologia
19.
BMC Health Serv Res ; 20(1): 783, 2020 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-32831066

RESUMO

BACKGROUND: Individuals with acute cervical spinal cord injury require specialised interventions to ensure optimal clinical outcomes especially for respiratory, swallowing and communication impairments. This study explores the experiences of post-injury care for individuals with cervical spinal cord injury and their family members during admissions in specialised and non-specialised units in the United Kingdom. METHODS: Semi-structured interviews were undertaken with individuals with a cervical spinal cord injury and their family member, focussing on the experience of care across units. Eight people with spinal cord injury levels from C2 to C6, were interviewed in their current care settings. Six participants had family members present to support them. Interviews were audio-recorded and transcribed with data inputted into NVivo for thematic analysis. RESULTS: The study identified six themes from the participant interviews that highlighted different experiences of care in non-specialised and specialised settings. A number of these were related to challenges with the system, whilst others were about the personal journey of recovery. The themes were titled as: adjustment, transitions, "the golden opportunity", "when you can't eat", communication, and "in the hands of the nurses and doctors". CONCLUSIONS: Whilst participants reported being well cared for in non-specialised units, they felt that they did not receive specialist care and this delayed their rehabilitation. Participants were dependent on healthcare professionals for information and care and at times lost hope for recovery. Staff in non-specialised units require training and guidance to help provide support for those with dysphagia and communication difficulties, as well as reassurance to patients and families whilst they wait for transfer to specialised units.


Assuntos
Medula Cervical/lesões , Família , Unidades Hospitalares , Traumatismos da Medula Espinal/reabilitação , Adulto , Idoso , Comunicação , Transtornos de Deglutição , Feminino , Pessoal de Saúde , Esperança , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Reino Unido , Adulto Jovem
20.
Genet Med ; 21(6): 1435-1442, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30374176

RESUMO

PURPOSE: Family studies are an important but underreported source of information for reclassification of variants of uncertain significance (VUS). We evaluated outcomes of a patient-driven framework that offered familial VUS reclassification analysis to any adult with any clinically ascertained VUS from any laboratory in the United States. METHODS: With guidance from FindMyVariant.org, participants recruited their own relatives for study participation. We genotyped relatives, calculated quantitative cosegregation likelihood ratios, and evaluated variant classifications using Tavtigian's unified framework for Bayesian analysis with American College of Medical Genetics and Genomics/Association for Molecular Pathology (ACMG/AMP) criteria. We report participation and VUS reclassification rates from the 50 families enrolled for at least one year and reclassification results for 112 variants from the larger 92-family cohort. RESULTS: For the 50-family cohort, 6.7 relatives per family were invited to participate and 67% of relatives returned samples for genotyping. Sixty-one percent of VUS were reclassified, 84% of which were classified as benign or likely benign. Genotyping relatives identified a de novo variant, phase variants, and relatives with phenotypes highly specific for or incompatible with specific classifications. CONCLUSIONS: Motivated families can contribute to successful VUS reclassification at substantially higher rates than those previously published. Clinical laboratories could consider offering family studies to all patients with VUS.


Assuntos
Predisposição Genética para Doença/classificação , Variação Genética/genética , Análise de Sequência de DNA/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Teorema de Bayes , Família , Feminino , Testes Genéticos/métodos , Genômica/métodos , Genótipo , Técnicas de Genotipagem/métodos , Sequenciamento de Nucleotídeos em Larga Escala/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Mutação/genética , Software
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