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Background: Guidelines recommend enteral feeding via gastrostomy should be considered for adult survivors of stroke with dysphagia who cannot eat or drink sufficiently for >4 weeks. Many people continue long-term tube-feeding via this route in the community where healthcare professionals contribute to their care and nutritional management, although little is known about their experiences of or attitudes towards enteral feeding in this situation. The present study aimed to explore the experiences and attitudes of healthcare professionals working with this patient group., Methods: Healthcare professionals were invited to complete a questionnaire devised for the study which comprised closed and open questions about tube-feeding including their patients' participation in feeding processes and mealtimes and how these might be improved. Responses to closed questions were analysed descriptively and free-text responses analysed using thematic analysis., Results: Fifty-seven participants met the inclusion criteria. They identified patients' quality of life (77% of respondents) and nutritional support (75%) as the most important aspects of tube-feeding. Good communication and training with healthcare teams and carers were considered important. Their patients' participation in tube-feed administration and mealtime involvement were described as variable and potentially beneficial, but both were related to patients' choice and health impairment. Blended tube-feeding was considered an option by 89% provided practical and safety conditions were met., Conclusions: Participants' experiences of and attitudes towards tube feeding in adults living with stroke in the community in the sample in the present study are varied and focussed on individual patients' needs, safety and professional standards., (© 2024 The Author(s). Journal of Human Nutrition and Dietetics published by John Wiley & Sons Ltd on behalf of British Dietetic Association.)

Feeding and swallowing disorders are prevalent in adults with Intellectual Disability (ID) and can potentially lead to discomfort, malnutrition, dehydration, aspiration, and choking. Most common interventions include: diet modification, compensatory strategies, swallowing therapy, and non-oral feeding. Despite their common use, the research evidence for these interventions is lacking. The current study aimed to systematically review the evidence for the safety and the effectiveness of interventions for feeding and swallowing disorders in adults with ID. Seven electronic databases, conference proceedings, and reference lists of relevant studies were reviewed from online availability to March 2019, with no language restrictions. Eligibility criteria encompassed experimental or non-experimental study design, adults (> 18 years) with ID and feeding and/or swallowing disorders (any etiology and severity) and any intervention for feeding and/or swallowing disorders. Methodological quality was assessed by two independent reviewers using the Downs and Black checklist. Four articles met the inclusion criteria. All included studies considered enteral feeding as an intervention strategy and had a retrospective observational design. Overall, included studies reported positive change in nutritional status and a high incidence of adverse events following enteral feeding initiation. Risk of bias was high with variability in methodological quality. The safety and effectiveness of interventions for feeding and swallowing in adults with ID is unclear. This review highlights the lack of evidence-based practice in this area. Directions for further research are provided. Before enteral feeding initiation, risks and benefits should be appropriately balanced on an individual basis, and caregivers should be involved in the decision-making process.

Objectives: to understand the psychosocial repercussions experienced by caregiving parents, resulting from care for the child with dysphagic cleft lip and palate., Methods: qualitative study, developed in a tertiary hospital in September 2016. The sample defined by theoretical saturation consisted of seven mothers. Data collection was performed by unstructured interview, being audio-recorded and fully transcribed. Symbolic Interactionism was used as theoretical framework, and Thematic Content Analysis as methodological framework., Results: the following themes emerged: diagnosisimpact and coping; coping with overload and stress; interaction between caregivers as an acceptance and coping strategy; impact on family and social life of caregivers; and curiosity coping, and family and community prejudice., Final Considerations: despite the physical and emotional overload, the mother figure plays the main and determining role in care, reflecting the complexity of care.

Aims and Objectives: To explore patients and carers' experience and perceptions of different modalities of long-term enteral feeding., Background: With an ageing population in Singapore, there is a concomitant increase in number of patients with dysphagia and hence increase in prevalence of enteral feeding. It is essential to understand experiences of patients and home carers with long-term home enteral feeding and perceptions of different modalities to better provide support., Design: A qualitative descriptive approach fulfilling the COREQ checklist criteria (See File S1). Nine patients who were receiving long-term enteral feeding and nine carers were recruited over the period of August to December 2017. One-to-one interviews were conducted and audio-recorded. An inductive content analysis approach, with open coding, creation of categories and abstraction of data, was adopted., Results: Three themes were generated: (a) factors influencing choice of mode of enteral feeding; respondents narrated factors such as need to "conceal" illness, need to be independent and previous bad experience with alternative modality (b) identified informational, emotional and physical needs. Respondents reported the need for support in terms of information on the different modalities, and training on how to self-care or provide care and (c) individual perception and attitude towards life with enteral feeding. Most respondents portrayed a positive outlook to life, despite that they could no longer participate in communal eating., Conclusion and Relevance to Clinical Practice: Understanding patients and carers' experience and perceptions will inform the development of strategies to empower future patients and carers in choice of modality for enteral feeding. Patients with percutaneous endoscopic gastrostomy (PEG) found it easier to integrate enteral tube feeding into daily lives. Carers played a pivotal role in choice of modality, as well as in care of patients on enteral feeding., (© 2019 John Wiley & Sons Ltd.)

Background: Dysphagia is common after stroke, requiring exclusive enteral feeding in 20% of patients. Recovery of oral feeding is associated with increased quality of life, better functional outcomes, and decreased mortality rates. However, evidence is heterogeneous and not conclusive on which factors are predictive of oral feeding recovery for stroke patients in rehabilitation units., Aim: To investigate predictors of complete oral feeding recovery., Design: Retrospective study., Setting: Intensive inpatient rehabilitation hospital., Population: Poststroke dysphagic individuals with enteral feeding., Methods: Retrospective chart review of demographic, clinical, rehabilitation, and swallowing factors. Univariate analysis and multivariate regression analysis were used to compare variables between the oral feeding recovery group and the enteral feeding group at discharge., Results: One hundred thirty-nine patients were included in the analysis. A total of 61.9% of the sample population resumed complete oral intake at discharge. There were statistically significant differences between the 2 groups in Functional Independence Measure cognitive score, clinical swallow evaluation, and instrumental swallow evaluation at admittance, and dysphagia rehabilitation. Multiple logistic regression analysis identified the absence of aspiration signs with liquids associated with a higher probability of the resumption of complete oral feeding (odds ratio [OR] 3.57; 95% confidence interval [CI] 1.07-11.89). Age between 73 and 79 years (OR .96; 95% CI .01-.58), the presence of aspiration and/or penetration (OR .22; 95% CI .07-.72), and the presence of residue (OR .14; 95%CI .04-.43) during fiberoptic endoscopic evaluation of swallowing presented lower probability of returning to complete oral feeding., Conclusion: Several demographic and swallowing characteristics predicted oral feeding recovery. Absence of dysphagia signs documented on fiberoptic endoscopic evaluation of swallowing was the strongest predictor of complete oral feeding resumption., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Purpose The aim of this study was to implement a novel reinforcement strategy into traditional dysphagia therapy with a school-age child diagnosed with a rare genetic syndrome, anxiety, and a hypersensitive gag reflex response. This clinical focus article evaluated the impact of a computer-based straw-drinking game on total liquid volume intake and the relationship between motivation and its role in feeding therapy. Method A longitudinal pilot study was used and required the development and implementation of a computer-based straw-drinking game as a novel reinforcement strategy. The gaming system was implemented to supplement ongoing dysphagia treatment in a single-subject case study design utilizing a client with pediatric dysphagia. Results The participant exhibited a trend of increased endurance during therapy sessions, allowing for increased volume per sip, increased trials per session, and decreased time between sequential trials. Average daily volume of oral intake remained less than 30 ml. Conclusions The gaming system maximized opportunities for orosensory desensitization of tactile input, resulting in increased comfort and endurance during therapy sessions, leading to more opportunities to practice the swallow. A novelty effect was observed as motivation and interest in the gaming system appeared greatest at the onset of the study. Generalized fatigue and anxiety continue to serve as barriers to more significant progress.

Background: thickened fluids are commonly advised to minimise the risk of aspiration in people with dysphagia, although many do not comply with this treatment. In health economics, utilities are values that reflect an individual's preferences for different health states. We examined the healthcare utilities, elicited using a time trade-off approach (TTO), from healthcare professionals and non-dysphagic patients, associated with long-term use of thickened fluids., Methods: the risk of aspiration with thin fluids was explained to consecutive hospital patients without dysphagia (n = 76) and to a convenience sample of healthcare professionals (n = 75) who were then randomly allocated to drink as much as possible of 200 ml of pre-prepared water of Grade 1 (very mildly thick) or Grade 2 (mildly thick) consistency. A standardised script with a ping-pong approach was then used to elicit TTO utilities for use of thickened fluids using a 10-year horizon., Results: median (inter-quartile range) utilities were 0.7 (0.5-0.9) for those receiving Grade 1 and 0.5 (0.3-0.7) for those receiving Grade 2 consistency fluid (Mann-Whitney test, P = 0.001). Thus, for example, on average those allocated to Grade 2 fluid would be willing to sacrifice 5 years of a 10-year lifespan not to be restricted to fluid of that consistency. There were no significant differences between patient and professional values., Conclusion: patients and professionals judge that long-term use of thickened fluids would significantly impair quality of life. Utilities associated with more viscous fluids are particularly low., (© The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

The psychosocial support needs of parents considering a gastrostomy feeding tube for their disabled child are often overlooked, yet there is a growing body of evidence that attests to the decisional conflicts parents, often mothers, experience. This may be in addition to the stress associated with feeding a disabled child. The support needs of families and caregivers should be assessed, including the values parents attach to oral and tube feeding. Structured support should be embedded within the care pathway and both professionals, and service users, with appropriate training should be identified to ensure parental information needs, and any emotional, practical and financial issues are addressed.

This original pilot study was conducted to explore and understand the factors that influence a patient's decision-making when considering percutaneous endoscopic gastrostomy placement for nonoral nutrition and hydration supplementation. Seven patients living with progressive dysphagic symptoms who had made a decision about percutaneous endoscopic gastrostomy placement were interviewed and their responses analyzed using the constant comparison method. All participants felt they had no option other than to accept the percutaneous endoscopic gastrostomy. The impact of visible physical deterioration and medical opinion were the most powerful influences on patients' decisions. Patients' perception of their involvement in the decision varied. This was linked to the amount and timing of information supplied and support they felt they received. Few patients have prior knowledge of tube feeding and rely heavily on medical advice. Effective communication by healthcare professionals can promote an environment that is supportive of patients' involvement in decisions. Adequate preparation time is vital if patients are to stop feeling uninvolved or peripheral to the decision-making process. Multidisciplinary teams need to address their working practices so that they do not intimidate patients, but rather empower patients in their decision-making.

Background: Percutaneous endoscopic gastrostomy tube has now become a preferred option for the long-term nutritional support device for patients with dysphagia. There is a considerable debate about the health issues related to the quality of life of these patients. Our aim of the study was to assess the outcome and perspectives of patients/care givers, about the acceptability of percutaneous endoscopic gastrostomy tube placement., Methods: This descriptive analytic study conducted in patients, who have undergone percutaneous endoscopic gastrostomy tube placement during January 1998 till December 2004. Medical records of these patients were evaluated for their demographic characteristics, underlying diagnosis, indications and complications. Telephonic interviews were conducted till March 2005, on a pre-tested questionnaire to address psychological, social and physical performance status, of the health related quality of life issues., Results: A total of 191 patients' medical records were reviewed, 120 (63%) were males, and mean age was 63 years. Early complication was infection at PEG tube site in 6 (3%) patients. In follow up over 365 +/- 149 days, late complications (occurring 72 hours later) were infection at PEG tube site in 29 (15 %) patient and dislodgment/blockage of the tube in 26 (13.6%). Interviews were possible with 126 patients/caretakers. Karnofsky Performance Score of 0, 1, 2, 3 and 4 was found in 13(10%), 18(14%), 21(17%), 29(23%) and 45(36%) with p-value < 0.001. Regarding the social and psychological aspects; 76(60%) would like to have the PEG tube again if required, 105(83 %) felt ease in feeding, and 76(60%) felt that PEG-tube helped in prolonging the survival. Regarding negative opinions; 49(39 %) felt that the feeding was too frequent, 45(36 %) felt apprehensive about dependency for feeding and 62(49%) were concerned about an increase in the cost of care., Conclusion: PEG-tube placement was found to be relatively free from serious immediate and long- term complications. Majority of caregivers and patient felt that PEG-tube helped in feeding and prolonging the survival. Studies are needed to assess the real benefit in terms of actual nutritional gain and quality of life in such patients.

This article considers the implications of a dispute between a speech therapist and other health professionals over whether a patient suffering from dysphagia should be allowed to take liquids by mouth. The right of the patient to act contrary to professional advice is discussed. The patient cannot insist that a health professional acts contrary to his or her professional judgment. The article also considers the law if the patient were to lack mental capacity.

Dysphagia is a common problem with individuals who have experienced a stroke. The interdisciplinary stroke team noted delays in clinical decision-making, or in implementing plans for patients with severe dysphagia requiring an alternative method to oral feeding, such as enteral feeding via Dobhoff (naso-jejunum) or PEG (percutaneous endoscopic gastrostomy) tubes, occurred because protocols had not been established. This resulted in undernourishment, which in turn contributed to clinical problems, such as infections and confusion, which delayed rehabilitation and contributed to excess disability. The goal of the project was to improve quality of care and quality of life for stroke patients experiencing swallowing problems by creating a dysphagia management decision-making process. The project began with a retrospective chart review of 91 cases over a period of six months to describe the population characteristics, dysphagia frequency, stroke and dysphagia severity, and delays encountered with decision-making regarding dysphagia management. A literature search was conducted, and experts in the field were consulted to provide current knowledge prior to beginning the project. Using descriptive statistics, dysphagia was present in 44% of the stroke population and 69% had mild to moderate stroke severity deficit. Delays were found in the decision to insert a PEG (mean 10 days) and the time between decision and PEG insertion (mean 12 days). Critical periods were examined in order to speed up the process of decision-making and intervention. This resulted in the creation of a decision-making algorithm based on stroke and dysphagia severity that will be tested during winter 2002.

Percutaneous endoscopic gastrostomy (PEG) is now the technique of choice for patients requiring long-term enteral feeding. It is a good method for feeding patients with neurological dysphagia and can safely be kept in situ for long periods. PEG feeding requires a multidisciplinary approach, involving doctors, nurses, pharmacists, speech therapists, dieticians and carers. The insertion of a PEG, which requires two operators and two endoscopy nurses, is described in full. Feeding can commence after a few hours. Various types of feed and feed-ing patterns are described and their relative merits discussed. Although psychological problems may occur following PEG insertion, the procedure is usually well accepted by patients.

Dysphagia is a common and distressing problem in motor neurone disease. This paper examines some of the strategies available for managing patients with dysphagia, and illustrates these with four contrasting case histories. The factors which influence the decision making process in patients with dysphagia are also discussed.

Successful oral intake of nutrition depends not only on the patient's ability to swallow efficiently and safely but also a number of cognitive, neurolinguistic, and behavioral variables. This paper reviews these competencies as they are integrated into the act of oral feeding and describes the types of disorders that affect these abilities. Methods of evaluating and treating the abilities needed for successful oral intake are described.