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.
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.
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".
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.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Individuals living with long COVID experience multiple, interacting and fluctuating symptoms which can have a dramatic impact on daily living. The aim of the Long Covid Personalised Self-managemenT ...support EvaluatioN (LISTEN) trial is to evaluate effects of the LISTEN co-designed self-management support intervention for non-hospitalised people living with long COVID on participation in routine activities, social participation, emotional well-being, quality of life, fatigue, and self-efficacy. Cost-effectiveness will also be evaluated, and a detailed process evaluation carried out to understand how LISTEN is implemented.
The study is a pragmatic randomised effectiveness and cost-effectiveness trial in which a total of 558 non-hospitalised people with long COVID will be randomised to either the LISTEN intervention or usual care. Recruitment strategies have been developed with input from the LISTEN Patient and Public Involvement and Engagement (PPIE) advisory group and a social enterprise, Diversity and Ability, to ensure inclusivity. Eligible participants can self-refer into the trial via a website or be referred by long COVID services. All participants complete a range of self-reported outcome measures, online, at baseline, 6 weeks, and 3 months post randomisation (the trial primary end point). Those randomised to the LISTEN intervention are offered up to six one-to-one sessions with LISTEN-trained intervention practitioners and given a co-designed digital resource and paper-based book. A detailed process evaluation will be conducted alongside the trial to inform implementation approaches should the LISTEN intervention be found effective and cost-effective.
The LISTEN trial is evaluating a co-designed, personalised self-management support intervention (the LISTEN intervention) for non-hospitalised people living with long COVID. The design has incorporated extensive strategies to minimise participant burden and maximise access. Whilst the duration of follow-up is limited, all participants are approached to consent for long-term follow-up (subject to additional funding being secured).
LISTEN ISRCTN36407216. Registered on 27/01/2022.
The purpose of this review is to explore the evidence around children and young people who require a tracheostomy and transition into adult services, reflecting on the challenges and considerations ...for clinical practice as these needs increase.
There are a lack of data on the incidence and prevalence of children and young people with a tracheostomy transitioning to adult services for ongoing care. There are significant variations in care needs, technology and previous experiences that demand more than a simple handover process. Examples of service models that support the transition of care exist, however these lack specificity for children and young people with a tracheostomy.
Further exploration of the needs of children and young people requiring airway technology is indicated, particularly considering the short and long-term education, health, and social care needs.
Dysphagia (swallowing impairment) is a frequent complication of cervical spinal cord injury (cSCI). Recently published national guidance in the UK on rehabilitation after traumatic injury confirmed ...that people with cSCI are at risk for dysphagia and require early evaluation while remaining nil by mouth National Institute for Health and Care Excellence. Rehabilitation after traumatic injury (NG211), 2022,
https://www.nice.org.uk/guidance/ng21
. While the pathogenesis and pathophysiology of dysphagia in cSCI remains unclear, numerous risk factors have been identified in the literature. This review aims to summarize the literature on the risk factors, presentation, assessment, and management of dysphagia in patients with cSCI. A bespoke approach to dysphagia management, that accounts for the multiple system impairment in cSCI, is presented; the overarching aim of which is to support effective management of dysphagia in patients with cSCI to prevent adverse clinical consequences.
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.
Background
People with post‐stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube‐feeds. Previous survey studies have found ...dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored.
Aims
To explore family members’ experiences of living with a spouse with post‐stroke dysphagia.
Methods & Procedures
This exploratory qualitative study used one‐to‐one semi‐structured interviews to explore family members’ experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio‐recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members’ experiences.
Outcomes & Results
Five spouses aged 70–93 years participated. Their relatives’ strokes happened 3 months to 3 years before the interview. Five themes were identified: ‘I do all of it’; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle.
Conclusions & Implications
It is important to consider family members’ perspectives as they often provide vital care to loved‐ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better‐targeted support.
What this paper adds
What is already known on the subject
Informal caregivers, often spouses, play a vital role in supporting the health and well‐being of older people with health conditions. The presence of post‐stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population.
What this paper adds to existing knowledge
Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem‐solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses.
What are the potential or actual clinical implications of this work?
Healthcare professionals might consider ways in which to support dysphagic patients’ families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers’ expertise to promote better health and quality‐of‐life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well‐being and patient safety.
National guidance recommends the involvement of speech and language therapists in intensive care particularly for those requiring tracheostomy and ventilation. However, the role of speech and ...language therapists is poorly understood especially in the context of critical care. This article aims to increase awareness of the background training and skills development of speech and language therapists working in this context to demonstrate their range of specialist abilities. Speech and language therapists support and enhance the process of laryngeal weaning alongside the rehabilitation of speech and swallowing as part of the multidisciplinary team. Examples are provided of the types of interventions that are used and technological innovations that may enhance rehabilitation of oropharyngeal impairments.
Introduction
Many Covid‐19 survivors are living with unresolved, relapsing and remitting symptoms and no ‘one size’ of treatment is likely to be effective for everyone. Supported self‐management for ...the varied symptoms of Long Covid (LC) is recommended by the National Institute for Health and Care Excellence in the United Kingdom. We aimed to develop a new personalised support intervention for people living with LC using a structured co‐design framework to guide replication and evaluation.
Methods
We used the improvement methodology, Experience‐Based Co‐Design, in an accelerated form to harness the collective experiences of people with LC. Incorporating evidence from ‘Bridges Self‐Management’ (Bridges) an approach in which healthcare professionals (HCPs)are trained to support knowledge, confidence and skills of individuals living with long term conditions. Co‐designed resources are also central to Bridges. Adults who self‐identified as living with or recovered from LC, from England or Wales, aged 18 years and over were recruited, and HCPs, with experience of supporting people with LC. Participants took part in a series of small co‐design group meetings and larger mixed meetings to agree priorities, core principles and generate resources and intervention content.
Results
People with LC (n = 28), and HCPs (n = 9) supported co‐design of a book (hard‐copy and digital form) to be used in 1:1 support sessions with a trained HCP. Co‐design stages prioritised stories about physical symptoms first, and psychological and social challenges which followed, nonlinear journeys and reconceptualising stability as progress, rich descriptions of strategies and links to reputable advice and support for navigating healthcare services. Co‐design enabled formulation of eight core intervention principles which underpinned the training and language used by HCPs and fidelity assessments.
Conclusion
We have developed a new personalised support intervention, with core principles to be used in one‐to‐one sessions delivered by trained HCPs, with a new co‐designed book as a prompt to build personalised strategies and plans using narratives, ideas, and solutions from other people with LC. Effectiveness and cost effectiveness of the ‘LISTEN’ intervention will be evaluated in a randomised controlled trial set within the context of the updated Framework for Developing and Evaluating Complex Interventions.
Patient and Public Contribution
The LISTEN Public and Patient Involvement (PPI) group comprised seven people living with LC. They all contributed to the design of this study and five members were part of a larger co‐design community described in this paper. They have contributed to this paper by interpreting stages of intervention design and analysis of results. Three members of our PPI group are co‐authors of this paper.
COVID-19 has had an impact globally with millions infected, high mortality, significant economic ramifications, travel restrictions, national lockdowns, overloaded healthcare systems, effects on ...healthcare workers’ health and well-being, and large amounts of funding diverted into rapid vaccine development and implementation. Patients with COVID-19, especially those who become severely ill, have frequently developed dysphagia and dysphonia. Health professionals working in the field have needed to learn about this new disease while managing these patients with enhanced personal protective equipment. Emerging research suggests differences in the clinical symptoms and journey to recovery for patients with COVID-19 in comparison to other intensive care populations. New insights from outpatient clinics also suggest distinct presentations of dysphagia and dysphonia in people after COVID-19 who were not hospitalized or severely ill. This international expert panel provides commentary on the impact of the pandemic on speech pathologists and our current understanding of dysphagia and dysphonia in patients with COVID-19, from acute illness to long-term recovery. This narrative review provides a unique, comprehensive critical appraisal of published peer-reviewed primary data as well as emerging previously unpublished, original primary data from across the globe, including clinical symptoms, trajectory, and prognosis. We conclude with our international expert opinion on what we have learnt and where we need to go next as this pandemic continues across the globe.
Background
There is increased involvement of speech and language therapists (SLTs) in critical care and long‐term units supporting patients with ventilatory needs and complex dysphagia. SLTs have a ...range of specialist knowledge in the function of the pharynx and larynx to enable them to support therapeutic interventions and contribute to the management of those patients. In Israel, there are currently no designated courses or training programmes for SLTs to establish advanced clinical skills in tracheostomy and ventilator management. There are currently standards of care for SLT working in designated wards for ventilated patients, however not in acute wards, critical care, and internal medicine wards where ventilated patients can be hospitalized.
Aims
To identify the skills and expertise of the Israeli SLT workforce working with tracheostomy patients. Specifically, to identify their level of training, access to training, client population, work settings, and level of work confidence.
Methods
The study involved electronic distribution of a 55‐item online survey to SLTs in Israel. The questions included demographic information, training, confidence, and clinical support.
Results
Responses were received from 47 SLTs. The majority (40.4%) spent between 1% and 9% of their clinical time with ventilated patients. Almost 80% work with seniors (≥65 years) and almost 70% work with adults (18–65 years) half the time or more. In inpatient rehabilitation, 46.8% reported that they manage patients with tracheostomy half the time or more. In outpatient rehabilitation settings, 21.3% reported that they manage patients with tracheostomy half the time or more. Prior to managing complex airway patients independently, 55.3% received less than 5 h formal tracheostomy training whilst 68.1% received less than 5 h training on ventilated patients. Multidisciplinary teams (MDTs) existed for tracheostomy patients (85.1%) and ventilated patients (70.2%) and high levels of confidence were reported for managing patients with tracheostomies (mode of 4 in a scale of 0–5, where 5 means fully confident) and ventilated patients (mode of 3 in a scale of 0–5). A significant relationship was found between level of confidence and presence of an MDT.
Conclusions
Limited training access was found for SLTs working with this complex population. A competency framework needs to be established with access to training and supervision. MDT existence contributes to confidence. Most respondents worked in rehabilitation settings, and very few worked in acute care, critical care, and internal medicine wards. It seems reasonable that in order to change this, minimal standards of care should be established on these wards.
What this paper adds
What is already known on the subject
Speech and language therapists (SLTs) have an important role in critical care and long‐term units supporting patients with complex dysphagia and undergo formal training and supervision in UK and Australia.
What this paper adds to existing knowledge
In Israel, most SLTs work with tracheostomy and ventilated adult patients in rehabilitation settings, whilst few work in acute, critical care, and internal medicine wards. There are limited opportunities for formal training and supervision, although MDT support enhances clinical confidence.
What are the potential or actual clinical implications of this work?
SLTs in Israel would benefit from establishing a competency framework for tracheostomy and ventilator patient management to support training, standards of care, and increase clinical involvement in acute settings. This will enhance clinical outcomes for their large population of complex airway patients.