Keep My Teeth: An evaluation of multi-disciplinary training in mouth care for people with intellectual developmental disorders.

AIM: To evaluate a modular didactic training intervention called Keep My Teeth designed by special care dentists, for a range of healthcare students to provide oral homecare for people with intellectual developmental disorders (PwIDD). METHODS: To evaluate the intervention a one-group pre-test post-test pre-experimental research design was utilized. The intervention was delivered by virtual platforms or face-to-face, with a sub-sample of participants also receiving practical training. Healthcare students included Speech and Language Therapy (SLT), Registered Nurse Intellectual Disability (RNID), Dental Science (DS), Dental Nursing (DN), and Dental Hygiene (DH). RESULTS: Sixty-three of the 147 trainees completed all surveys. A significant change in perspective on barriers was seen for most groups post-training, with an increase in confidence in delivering oral care to PwIDD across disciplines; 67% of DH/DN students who took part in the practical training felt that the didactic training was just as effective without the practical training, while 42% of the DS students felt that was true. CONCLUSIONS: The training interventions provided seem to have increased the awareness of study participants in relation to barriers to care, and increased their self-efficacy towards, and intention to perform, oral homecare behaviors.

OptiCogs: feasibility of a multicomponent intervention to rehabilitate people with cognitive impairment post-stroke.

BACKGROUND: Stroke is a leading cause of death and disability worldwide. Despite the prevalence and associated burden of cognitive impairment post-stroke, there is uncertainty regarding optimal cognitive rehabilitation for people post-stroke. This study aimed to assess whether a multicomponent intervention, called OptiCogs, is feasible, acceptable, and safe for people with cognitive impairment post-stroke. A secondary aim was to explore changes in cognitive function, fatigue, quality of life, physical function, and occupational performance, from pre-intervention to post-intervention. METHODS: A feasibility study was conducted where people post-stroke with cognitive impairment enrolled in a 6-week multicomponent intervention. The primary outcomes recorded included response rate, recruitment rate, retention rate, adherence to the intervention protocol, adverse events, and acceptability of the intervention to people post-stroke. Secondary outcomes included (i) change in cognitive functioning using the Addenbrooke's Cognitive Examination III, (ii) fatigue using the Fatigue Severity scale, (iii) quality of life using the Stroke Specific Quality of Life scale (iv) physical function using the patient-reported outcomes measurement information system, and (v) patient-reported occupational performance using the Canadian Occupational Performance Measure. The Consolidated Standards of Reporting Trials extension reporting guidelines were followed, for pilot and feasibility studies, to standardize the conduct and reporting of this study. RESULTS: The response rate was 10.9%. Nine eligible participants were enrolled during the 4-month recruitment period, with eight participants completing the entire 6-week intervention, as well as the pre- and post-intervention outcome measures. There were no reported adverse events. Participants were satisfied with the intervention and found it acceptable overall. Results of the secondary outcomes were promising for cognitive function (ACE III, pre: 63.3 ± 23.9 to post: 69 ± 24.6), fatigue (FSS, pre: 52.5 ± 7.3 to post: 45.6 ± 7.2), quality of life (SSQoL, pre: 131.0 ± 26.3 to post: 169.9 ± 15.3), physical function (PROMIS-PF, pre: 15.5 ± 6.3 to post: 15.8 ± 5.3), and occupational performance (COPM performance, pre: 9.3 ± 2.3 to post: 22.9 ± 4.2) and COPM satisfaction, pre: 9.9 ± 2.1 to post: 22.7 ± 3.5). CONCLUSION: Preliminary results suggest low-modest recruitment and high retention rates for the OptiCogs intervention. Changes in cognitive function, fatigue, quality of life, and self-reported occupational performance show improvement from pre- to post-intervention. These potential benefits require further testing in a larger pilot trial. TRIAL REGISTRATION: NCT05414539.

Exploring the impact educational interventions have on nursing and medical students' attitudes and empathy levels towards people with disability. A systematic review.

This systematic review aimed to explore the impact educational interventions have on undergraduate nursing and medical students' attitudes and empathy levels towards people with disability. There are over one billion people with some form of disability currently. A growing body of research reveals that nurses and doctors display negative attitudes including decreased empathy towards people with disability. A systematic review using narrative synthesis of chosen randomized controlled trials was employed. A comprehensive search was completed in June 2021 on six databases (CINAHL, Medline, Science Direct, Health Research Premium - PROQUEST, Scopus. Cochrane Library). The search strategy yielded 21,616 studies and only three randomised controlled trials fulfilled the eligibility criteria. These trials included 125 participants (n = 50 medical students and n = 75 nursing students) and evaluated the effectiveness of a disabled health course, disability education module with bedside teaching and wheelchair workshop intervention. Findings from one study revealed that a disabled health course using affective learning method based on a transformative learning theory significantly improves attitudes to disability amongst nursing students however there was no statistically significant difference in empathy levels. More high-quality randomised controlled trials with greater theoretical and methodological complexity are needed to identify more effective educational approaches that enhance attitude and empathy levels of these key stakeholders.

Exploring the perspectives of key stakeholders on the design and delivery of a cognitive rehabilitation intervention for people post-stroke.

PURPOSE: Stroke is a leading cause of death and disability worldwide. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding optimum interventions to improve cognitive function in people post-stroke. The aim of this study is to explore the perspectives of key stakeholders on the design and development of a multidisciplinary intervention to rehabilitate cognitive deficits in people post-stroke. MATERIALS AND METHODS: Audio-recorded, semi-structured interviews were employed with people post-stroke, caregivers, healthcare professionals and academics. All transcribed interviews were exported to NVivo software and analysed using reflexive thematic analysis. RESULTS: Thirty interviews were conducted across stakeholder groups including people post-stroke (n = 10), caregivers (n = 5), healthcare professionals (n = 14) and academics (n = 1). Four themes relevant to the design and development of the intervention were identified (i) engagement in the intervention must be meaningful, (ii) the point of readiness to engage, (iii) a familiar but flexible setting is key (iv) pragmatics of intervention delivery. CONCLUSIONS: These findings present new perspectives across stakeholder groups on the design and delivery of an intervention to rehabilitate cognitive deficits in people post-stroke. Taken together with existing quantitative evidence, these findings will inform the development of a feasibility trial, examining patient and process outcomes, to rehabilitate cognitive deficits post-stroke.

Ethical considerations in the care of people with eating, drinking and swallowing difficulties.

PURPOSE OF REVIEW: Eating, drinking and swallowing difficulties are low on the list of clinical headlines. Until something affects the process and then we see how pervasive and devastating such issues are. Recent guidelines have been published looking at national competencies to be structured into preregistration education. Professional bodies have addressed the topic from a risk perspective, which may be counter to the patient-centred approach of shared decision making. Our review places the literature in the wider, historical context of bioethics and our experience regarding ethical challenges as we strive to support our patients. RECENT FINDINGS: Recent literature addressing ethical care for a person with eating, drinking and swallowing difficulties, highlights shared decision-making. This is guided by patient preference, professional roles and approaches, cultural context and informed consent. Studies highlight the importance of appropriate communication and documentation, and ethical decision-making steps. SUMMARY: We hope to widen clinicians' perspectives and reflection on factors influencing these challenges (including own biases), and how to address them so that the patient and the clinician are satisfied. Ethical approaches require skills and knowledge, and critically also time. Resources should be allocated at the service level to ensure a robust process of informed consent and decision making.

A qualitative systematic review of family caregivers' experiences of artificial nutrition and hydration at home: A meta-ethnography.

BACKGROUND: Artificial nutrition and hydration (AN&H) may be provided to individuals in the home environment, and family caregivers are often involved in the management of this intervention. This experience can have multiple consequences for families. AIMS: The aim of this meta-ethnography is to explore and synthesize the personal experiences of family caregivers providing care to a person receiving home AN&H. METHODS & PROCEDURES: A comprehensive search of the literature was conducted without any time limitations applied. Seven stages of meta-ethnography were followed. Public and patient involvement was incorporated into the development of the line of argument synthesis in this review. This review is reported following the eMERGe guidelines and it was registered in PROSPERO. MAIN CONTRIBUTION: A total of 22 studies were included representing the experiences of 336 family caregivers. Two main themes emerged: (1) sink or swim, being thrown in at the deep end; and (2) professional support as a bedrock. The first theme represents the experiences from the very start of home AN&H when the family caregivers may be overwhelmed with the level of skills they have to acquire. With time, family caregivers perceived the benefits, but also the challenges, associated with managing home AN&H. If a person receiving home AN&H was able to continue with some oral intake, it had a positive impact on family caregivers' experiences. The second theme represents the influence of professional support on the lived experience of family caregivers managing home AN&H. This support should be individualized, comprehensive, and co-created with the family caregiver and the person receiving home AN&H. CONCLUSIONS & IMPLICATIONS: This review concluded that caring for a person receiving home AN&H can be very challenging for family caregivers. Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to acquire skills, competence and confidence in this new role. Speech and language therapists are important members of this multidisciplinary team because they can facilitate a continuation of oral intake as appropriate. WHAT THIS PAPER ADDS: What is already known on the subject AN&H has an impact not only on the person receiving it but also on the wider family and family caregivers. Healthcare professionals have a role in supporting people living with AN&H. What this paper adds to existing knowledge This review presents a rigorous qualitative evidence synthesis that adheres fully to the eMERGe guidance for reporting of meta-ethnography. Within this meta-ethnography a current caregiver was consulted during the creation of the line of argument synthesis to provide a unique perspective to the review process. This review synthesized the current body of evidence that explores the lived experience of home AN&H (any type) for family caregivers, identifies where professional support is required and highlights current gaps. What are the potential or actual clinical implications of this work? Family caregivers require personalized support from a multidisciplinary team of healthcare professionals to adjust to living with home AN&H. This support assists people living with home AN&H in perceiving benefits and developing more positive experiences. Speech and language therapists are important members of the multidisciplinary team supporting individuals with home AN&H and their family caregivers as they can facilitate a continuation of oral intake as appropriate.

A qualitative meta-synthesis of evidence (meta-ethnography) exploring the personal experiences of gastrostomy tube in neurodegenerative diseases: a case of motor neurone disease.

PURPOSE: The lived experiences of a gastrostomy tube (GT) in adults with neurodegenerative diseases (NDDs) are not well understood. The aim of this qualitative meta-synthesis was to review and synthesise the available evidence to inform clinical practice and identify research gaps. METHODS: Meta-ethnographic synthesis of qualitative studies was conducted with systematic searching of eight databases from inception to March 2021. Qualitative studies reporting personal experiences of GTs in adults with NDDs were identified. New theories were developed during translation of concepts from each study and combined as a "line-of-argument" synthesis. Patient and public involvement was incorporated as two of the authors are living with an NDD and a GT. RESULTS AND CONCLUSIONS: Of 2863 unique records identified, only nine fulfilled the review criteria. All studies recruited participants with motor neurone disease (MND); no other NDDs were represented. Two main themes emerged: decision making and living with GT. Decision making was the predominant theme and data regarding living with GT were sparse. There is limited research on the lived experience of a GT in adults with NDDs. The lived experience of GT in MND is complex and individualised. Future research is indicated to inform clinical practice.Implications for rehabilitationEvidence related to the lived experiences of gastrostomy tube (GT) in neurodegenerative diseases (NDDs) is lacking especially in relation to the time after GT insertion.Decision making in relation to GT is a complex and individualised psychological process for some people, while others perceive no decisional conflict.Support from healthcare professionals is crucial during the decision-making time and should not cease after GT insertion.Support from healthcare professionals can help resolve any clinical complications and also incorporate GT into everyday routines.Healthcare professionals should be aware that their views on the benefits and problems related to GT may differ to those of individuals with a NDD.

How do people with Motor Neurone Disease experience dysphagia? A qualitative investigation of personal experiences.

INTRODUCTION: Motor Neurone Disease is a rapidly progressing, fatal and relatively rare neurodegenerative disease of unknown etiology. People diagnosed with Motor Neurone Disease develop a range of symptoms including dysphagia (swallowing impairments). Although generally recognized to cause serious medical and psycho-social consequences, little is known how this population experiences dysphagia. AIM: To investigate the experiences of dysphagia from the perspective of people diagnosed with Motor Neurone Disease. METHOD: This study employed Interpretative Phenomenological Analysis to investigate the experiences of dysphagia in ten people with Motor Neurone Disease who participated in individual, multiple interviews (n = 44) and meal-time observations. RESULTS: Participants' experiences of dysphagia were inseparable from their broader experience of Motor Neurone Disease. Apart from specific circumstances and when dysphagia was severe, dysphagia was not experienced as a constant issue for participants. Participants reported a changed perception of food and fear of choking. They generally aimed to manage dysphagia independently rather than seeking professional help and employed strategies such as choosing easy to swallow foods and limiting mealtime distractions. CONCLUSION: This study provides a unique contribution in advancing our understanding of dysphagia in Motor Neurone Disease. Professionals need to view dysphagia within the disease as a whole, and recognize personal values, preferences and coping strategies of people with Motor Neurone Disease, in the management of dysphagia.IMPLICATIONS FOR REHABILITATIONRecognizing the experiences of dysphagia in Motor Neurone Disease contributes to provision of patient-centred care.Professional services for dysphagia should consider the overall experience of living with Motor Neurone Disease rather than focusing on dysphagia alone.Some people with Motor Neurone Disease wish to manage dysphagia alone. Research and intervention should focus on how to support people with Motor Neurone Disease in doing so.Although dysphagia causes multiple consequences in Motor Neurone Disease it may not be perceived as a constant issue by people with Motor Neurone Disease. Communication impairment may be a bigger concern than dysphagia for some people with Motor Neurone Disease.

Ethical Issues in Dysphagia Management.

Dysphagia management is complex and requires balancing individuals' preferences, quality of life, and medical consequences. Ethical challenges are not uncommon given the complexity of dysphagia. Professionals must engage in ethical reflection and shared decision-making when managing dysphagia. Recognizing one's own presuppositions and beliefs may be fundamental to ensuring an ethical approach. The goal of this article is to apply principles of ethics using hypothetical case studies of dysphagia. To this end, we will describe the challenges of working with the disorder of dysphagia; the influence of culture on decision-making about eating and feeding; the importance of information disclosure and respect for individuals' refusal of recommendations; and the interplay of ethical reflection, evidence, and clinical judgment when making complex dysphagia management decisions. These concepts should be kept in mind to ensure compassionate and competent care of the person with eating, drinking, or swallowing problems and their family caregivers.

'This is your golden time. You enjoy it and you've plenty time for crying after': How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis - A qualitative study.

BACKGROUND: Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis. AIM: To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis. DESIGN: Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n). SETTING/PARTICIPANTS: Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland (n = 10). FINDINGS: Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible. CONCLUSION: This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking.

Do stroke clinical practice guideline recommendations for the intervention of thickened liquids for aspiration support evidence based decision making? A systematic review and narrative synthesis.

RATIONALE: Aspiration is a common sequela post stroke as a result of oropharyngeal dysphagia. It is primarily managed using the poorly empirically supported intervention of thickened liquids. Where evidence is limited, clinicians may rely on clinical practice guidelines to support decision making. The purpose of this systematic review and narrative synthesis was to evaluate the evidentiary bases of recommendations made by stroke clinical practice guidelines regarding the thickened liquids intervention. METHODS: A systematic review was conducted on stroke clinical guidelines retrieved via searches conducted across a range of databases including Academic Search Complete, CINAHL, MEDLINE, and the Cochrane Library as well as through association websites. Guidelines were eligible for inclusion if they focused on adult stroke populations, made recommendations relating to the thickened liquid intervention and were published between January 2010 and December 2018. Four independent reviewers rated methodological quality using the AGREE-II instrument. Intervention recommendations were extracted and analysed using the Criteria for Levels of Evidence Reported from the Canadian Stroke Best Practice Recommendations and a novel framework examining the appropriateness of the supporting evidence. RESULTS: Thirteen clinical guidelines were included in the review. Methodological quality was variable with seven rating as good-excellent overall. Thirty recommendations regarding the intervention were extracted. Of these, 16 recommendations were classed as a recommendation to use the treatment and all guidelines made this recommendation. Much of the evidence used to scaffold recommendations did not directly support the intervention. CONCLUSIONS: Despite the limited evidence base for the thickened liquid intervention, there was consensus among stroke guidelines in recommending it. This is despite limited empirical support. Furthermore, much of the evidence used to support recommendations was not appropriate, suggesting less than satisfactory evidence-based practices in formulating recommendations. In this case, clinical guidelines may not be reliable decision-support tools for facilitating clinical decision making.

Developing a web-based patient decision aid for gastrostomy in motor neuron disease: a study protocol.

INTRODUCTION: Motor neuron disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time-sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids (DAs) to support patients making this decision in the UK. This study will develop and pilot a patient DA to provide evidence-based information on gastrostomy placement and feeding that is relevant to people with MND; communicate the risks and benefits associated with each option; check understanding and clarify personal values and preferences, enabling patients to make a decision congruent with their values and appropriate for them. METHODS AND ANALYSIS: A two-phase process, observing the International Patient Decision Aid Standards, will be used to develop the DA, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the DA, and explore the best way to present this. In the second phase, a prototype DA will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals working with them. ETHICS AND DISSEMINATION: Ethical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Study findings will be disseminated through academic and non-academic publications, conference presentations, stakeholder websites and social media. A feasibility study will follow to explore the acceptability and practicality of the DA for patients, carers and HCPs in practice and to assess whether the DA shows promise of being beneficial for the intended population.