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Objective: Although Ireland has one of the highest levels of well‐being in Europe, having a health condition has been found to have a direct negative impact. The aim of this study is to evaluate the current situation and the experiences of patients with epidermolysis bullosa (EB), a rare genetic skin disease, and their relatives living in Ireland, with a focus on burdens and helpful practices. Methods and Measures: In a mixed‐methods design, a series of standardised questionnaires were combined with open‐ended questions. Via an online survey, data from n = 59 EB patients and relatives of EB patients living in Ireland were collected. Results: EB affects both the patients and their relatives. Burdens were found in relation to the visibility of EB, the degree of severity, the current health status, reduced mobility, the financial impact of EB, the psychosocial impact and personal and social resources. The paper also analyses existing resources and highlights opportunities for support and needs of improvement. Conclusion: Quality of life with EB is influenced by somatic symptoms and the psychosocial burden. Individual helpful practices in dealing with this rare disease can be considered as mediators, but they need to be supported by structural and healthcare improvements. Patient or Public Contribution: The perspective of EB patients, their relatives and EB experts were taken into account in the development of the study design via two feedback loops with the EB patient organisations DEBRA Ireland and DEBRA Austria. The design was adapted accordingly. Additionally, by including open‐ended questions, patients and relatives could contribute their individual perspectives and add insights into their lives with EB that might not have been captured with the structured online survey alone. [ABSTRACT FROM AUTHOR]

Background: People with Parkinson's disease (PD) do not always access specialist outpatient services in a timely manner in Ireland. The perspectives of people living with PD, relating to service access, are largely absent in the existing literature. Aim: To explore experiences of PD service access for people living with PD, using a qualitative approach. Methods: Purposive maximum variation sampling was used. Semi‐structured telephone interviews were conducted with 25 service users, including people with PD (n = 22) and supporting carers (n = 3). Informed consent was obtained from all participants. Interviews ranged in duration from 30 to 90 min. Data were managed in NVivo 12 and interpreted inductively using thematic analysis. The researchers were reflexive throughout the research process. The Consolidated Criteria for Reporting Qualitative Research checklist was employed to maximise transparency. Results: The findings highlight several key barriers to and facilitators of equitable and timely service access. Three key themes were identified comprising experiences of PD service access including 'geographical inequity', 'discriminatory practices', and 'public and private system deficits'. Together, these themes illustrate how a two‐tiered and under‐resourced health system lacks capacity, in terms of infrastructure and workforce, to meet PD needs for both public and private patients in Ireland. Conclusions: These findings point to problems for PD care, relating to (i) how the health system is structured, (ii) the under‐provision and under‐resourcing of specialist outpatient PD services, including medical, nursing, and multidisciplinary posts, and (iii) insufficient PD awareness education and training across health settings. The findings also show that telemedicine can provide opportunities for making access to certain aspects of PD care more flexible and equitable, but the feasibility and acceptability of technology‐enabled care must be assessed on an individual basis. Implications for policy, practice and research are discussed. Patient or Public Contribution: The design and conduct of this study were supported by an expert advisory group (EAG) of 10 co‐researchers living with PD. The EAG reviewed the interview schedule and the protocol for this study and provided detailed feedback from their perspective, to improve the methods, including the interview approach. The group also reviewed the findings of the study and contributed their insights on the meaning of the findings, which fed into this paper. [ABSTRACT FROM AUTHOR]

Background: During the COVID‐19 pandemic, Ireland implemented a series of stringent public health measures, including lockdowns and suspension of non‐urgent clinical services. Aims: To investigate the impact of the COVID‐19 pandemic on the demand for and delivery of speech and language therapy (SLT) services in Ireland in 2020. Methods & Procedures: Two iterations of a cross‐sectional, mixed‐methods online survey were distributed to speech and language therapists (SLTs) and SLT students in Ireland in the spring and autumn of 2020 using a combination of purposive and snowball sampling. The spring survey yielded 407 responses (including 14 from SLT students), while 197 respondents took part in the autumn (13 students). Survey analysis focused on questions related to the impact of the COVID‐19 pandemic on delivery and demand for SLT services (student responses were excluded from analysis owing to low response rate). The largest group in respect of experience were senior SLTs (58% in both surveys). The work settings most strongly represented were HSE primary care (34.4%) and disability services (26.5%) in the spring, and HSE primary care (39.1%), acute hospitals (22.8%) and disability services (20.8%) in the autumn. We used descriptive statistics, including distribution analysis, to analyse the quantitative data. Free text data were interrogated through a variant of a conventional qualitative content analysis. Outcomes & Results: In the spring, cessation of face‐to‐face services featured prominently (reported by 65.6% versus 14.2% in the autumn), across SLTs' work settings, except acute hospitals. Lower demand was reported by 42.5% in the spring, while in the autumn, 48.7% indicated that demand was higher. SLTs experienced large‐scale redeployment (spring: 45.9%, autumn: 38.4%), with HSE primary care SLTs redeployed most (spring: 71.7%; autumn: 62.3%). The need to suddenly pivot to telehealth was a significant challenge in terms of training, technology and logistics. New ways of working emerged and gradually, telehealth became more embedded. SLTs also had to adapt to working with evolving public health measures, such as space restrictions and personal protective equipment (PPE) requirements. Across the two survey iterations, SLTs reported tensions between demands and capacity: while referrals and demand initially decreased in the spring, this led to increased backlog and longer waiting lists, ongoing and increasing pressure on clinicians and services, and negatively impacted clients and families. Conclusions & Implications: The COVID‐19 pandemic had a significant negative impact on SLT services in Ireland. Going forward, the SLT profession and its services will require sustained support to mitigate long‐term negative consequences, such as increased waiting lists. WHAT THIS PAPER ADDS: What is already known on this subject: The negative impact of the COVID‐19 pandemic on SLT services has been examined in several countries. Ireland imposed more stringent pandemic‐management measures than many other countries, and it was therefore warranted to investigate how SLT services in the country were affected. What this study adds to the existing knowledge: Face‐to‐face SLT services effectively ceased in most non‐urgent contexts in spring 2020. This coincided with large‐scale redeployment of SLTs to non‐SLT contexts. By autumn 2020, demand had increased again, but not all services had recommenced, and redeployment was still a factor. Although SLTs adapted to the ongoing changes imposed by the pandemic, they voiced concern about increasing backlogs and longer waiting lists, ongoing and increasing pressure on both SLTs and services, and negative impacts on clients and families. What are the actual and clinical implications of this work?: The COVID‐19 pandemic had a significant negative impact on SLT services in Ireland. Going forward, the SLT profession and its services will require sustained support to mitigate long‐term negative consequences, such as increased waiting lists. [ABSTRACT FROM AUTHOR]

Background: Supporting psychosocial well‐being in aphasia is necessarily person‐centred, interdisciplinary and coordinated. Shortcomings in such support are described in Ireland and elsewhere. Speech and language therapists (SLTs) are integral; and describing current practice and barriers they experience is important for enhancing service delivery. Aims: To understand how SLTs enact, and are supported to enact, aphasia psychosocial care in Ireland. Methods & Procedures: This is a cross‐sectional, online, self‐administered clinician survey targeting SLTs working minimally 1 year post‐qualification with persons with aphasia of any aetiology in Ireland. The survey questions were charted against key constructs of the implementation science framework, normalization process theory (NPT), and descriptive statistics were applied. Outcomes & Results: A total of 54 eligible datasets were included. SLTs believed psychosocial support to be part of their role, but perceived multiple barriers in enacting it. These included a lack of training, clinical supervision, management support, role recognition, and access to and joint working with mental health professionals and services. Conclusions & Implications: SLTs in Ireland face a range of individual and structural barriers, including care coordination and resourcing. There is a clear need not only for training, upskilling and mentorship, but also for wider changes around access to mental health professionals and clarity around the processes of referral, coordination and integration of aphasia care across settings. These findings comprise preliminary insights into current practices. Further research is needed as well as clarity on best‐practice pathways for different aetiologies of aphasia. Articulating current practices using NPT may have utility for developing empirically informed and principled interventions to improve service delivery. WHAT THIS PAPER ADDS: What is already known on this subject: People with aphasia of all aetiologies are at risk of psychosocial problems. Shortcomings in access and the availability of appropriate support have been documented both internationally and in Ireland. To address this issue, an important first step is to understand how SLTs in Ireland currently enact and are supported to enact aphasia psychosocial care. What this study adds to the existing knowledge: The findings describe the potential levers and barriers to progressing aphasia psychosocial care in Ireland. A range of individual, team and structural factors were identified. These were locally contextualized but similar issues are reported in other countries. Linking attitudes with NPT constructs provides a first step for further principled implementation projects. What are the practical and clinical implications of this study?: Addressing psychosocial problems is perceived as a legitimate part of the speech and language therapy role. SLTs in Ireland enact a range of therapeutic approaches but may need opportunities for formal training and supervision, and for better coordination and integration with other mental health services and disciplines. Understanding differences in care pathways across the range of aphasia aetiologies is additionally important given the emphasis on post‐stroke aphasia in the literature. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study was to: (1) use cognitive task analysis to describe final year nursing students situation awareness in recognising, responding and escalating care of deteriorating patients in ward settings; and (2) make recommendations for training and practice. Design: A mixed methods cognitive task analysis with a convergent triangulation design. Method: Data collection involved observations of 33 final year nursing students in simulated deteriorating patient scenarios and retrospective cognitive interviews. A process tracing technique was applied to identify the cues to deterioration participants perceived; how cue perception altered as situational demands increased; the extent that participants made connections between perceived cues and reached a situational understanding; and the factors that influenced and constrained participants situation awareness. Qualitative and quantitative findings are woven together and presented using descriptive statistics, illustrative quotations and timeline extractions. Results: The median cue perception was 65.4% and 57.6% in the medical and surgical scenarios, respectively. Perception was negatively influenced by incomplete vital sign monitoring as situations escalated; limited physical assessments; passive scanning behaviours; poor task automaticity; and excessive cognitive demands. Incomplete perception, poor cue integration and underdeveloped mental models influenced situational understanding. Escalation calls did not always accurately reflect situations and a reporting mindset was evident. Clinical exposure to deteriorating patients was described as variable and opportunistic. Reporting Method: The study is reported in accordance with the Good Reporting of a Mixed Methods Study (GRAMMS) checklist. Patient or Public Contribution: Patients and public were not involved in this research. [ABSTRACT FROM AUTHOR]