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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]

Irish health and social care policy has undergone a significant evolution in recent years to address inequalities, improve standards and update models of care to incorporate a rights‐based approach. The following account describes the Irish health and social care system, as delivered in the Republic of Ireland, and details how it operates for those with intellectual and developmental disabilities. The paper is informed by government policy, legislation, reviews, national plans, parliamentary reports, and population data. Clear progress has been made in shifting from a service‐led to a rights‐based, service‐user led model of care; however, resourcing this fundamental transition in approach to service provision poses challenges for the Irish State. [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: After total laryngectomy, surgical voice restoration is used to establish communication via tracheoesophageal voice prosthesis. Once voice is established, there is a paucity of information on what speech and language therapists (SLTs) should do to improve tracheoesophageal voice quality to ensure functional communication. No existing surveys or studies investigate this specific question. There is also a disconnect between guidelines, knowledge and clinical practice, whereby clinical guidelines stipulate the requirement for SLT intervention, but do not detail what this entails in the rehabilitation context. Aims: (1) To advance understanding of current clinical practice beyond voice prosthesis management and care. (2) To explore what approaches are implemented in clinical practice across the UK and Republic of Ireland to rehabilitate tracheoesophageal voice. (3) To investigate the barriers and facilitators to provision of tracheoesophageal voice therapy. Methods & Procedures: A self‐administered 10‐min online survey was developed using Qualtrics software and piloted before dissemination. Survey development was informed by the Behaviour Change Wheel to identify barriers, facilitators and additional factors contributing to SLTs' provision of voice therapy to tracheoesophageal speakers. The survey was disseminated via social media and professional networks. Eligibility criteria included SLTs with at least one year post‐registration experience and with experience of working with laryngectomy in the past 5 years. Descriptive statistics were used to analyse closed answer questions. Open question responses were analysed using content analysis. Outcomes & Results: The survey received 147 responses. Participants were representative of the head and neck cancer SLT workforce. SLTs believe that tracheoesophageal voice therapy is an important aspect of laryngectomy rehabilitation; however, there was a lack of knowledge about therapy approaches and insufficient resources for implementing therapy. SLTs expressed a desire for more training, specific guidelines and a stronger evidence base to inform clinical practice. Some SLTs expressed feelings of frustration and lack of acknowledgement for the specialist skills required to undertake laryngectomy rehabilitation and tracheoesophageal work in general. Conclusions & Implications: The survey identifies the need for a robust training approach and detailed clinical guidelines to promote consistent practice across the profession. The evidence base within this clinical area is emergent, hence there is a need for increased research and clinical audit to inform practice. Under‐resourcing was highlighted, which should be considered in service planning to ensure that adequate staff, access to expert practitioners or time ring‐fenced for therapy are available for tracheoesophageal speakers to receive the support they require. WHAT THIS PAPER ADDS: What is already known on this subject: Total laryngectomy results in life‐altering changes to communication. Clinical guidelines advocate for speech and language therapy intervention; however, there is no clear information on what SLTs should do to optimize tracheoesophageal voice and the evidence base to support practice is lacking. What this study adds to existing knowledge: This survey identifies what interventions SLTs provide in clinical practice to rehabilitate tracheoesophageal voice; and it explores the barriers and facilitators that influence the provision of tracheoesophageal voice therapy. What are the potential or actual clinical implications of this work?: Specific training, clinical guidelines, increased research and audit are required to support clinical practice in laryngectomy rehabilitation. Service planning should address the under‐resourcing of staff, expert practitioners and therapy allocated time. [ABSTRACT FROM AUTHOR]

Background: There is increasing recognition of the impact that dementia has upon swallowing and at mealtimes, and the significant effect this can have on people with dementia's health and well‐being. However, there remains a paucity of evidence for assessment and intervention practices for dysphagia and mealtime difficulties. Furthermore, there is a limited understanding of how speech and language therapists (SLTs) support people with these dementia‐related issues and what are the barriers and facilitators to practice. Further research is therefore needed to guide policy as well as service guideline and delivery development. Aims: To establish the current practices of SLTs managing dementia‐related dysphagia and mealtime difficulties in the UK and Republic of Ireland (ROI), and to establish their opinions and experiences of what challenges or supports to practice they have encountered. Methods & Procedures: An anonymous, cross‐sectional web‐based survey was developed and distributed to SLTs working in the UK and ROI. Respondents completed a questionnaire that consisted of open and closed questions across nine topic areas. Closed responses were evaluated using descriptive statistics; open‐ended questions were analysed using conventional content analysis. Outcomes & Results: A total of 310 people accessed the survey, and 125 respondents completed it fully. While respondents agreed on their role in dysphagia management, they varied in their views on the extent of their role in managing mealtime difficulties. Additionally, their self‐rated knowledge of mealtime difficulties in dementia was lower than their dysphagia knowledge. The respondents predominantly based their management decisions on their clinical experience of working with people with dementia. They primarily used compensatory strategies and frequently cited the need for family and care staff training. Respondents also highlighted barriers to effective management and training provision such as inefficient referral systems, a lack of carer knowledge and lack of SLT resources. Conclusions & Implications: The results provide valuable insight into the issues facing SLTs practising in this area. The SLTs surveyed considered dysphagia a core part of their role when supporting people with dementia; however, respondents' views on mealtime difficulties varied. This highlights the need to establish consensus guidelines on the SLT's role in order to avoid variations in service delivery that could negatively impact the health and well‐being of people with dementia. Moreover, further research to develop efficient and effective training for care staff supporting mealtime difficulties and dysphagia is essential. What this paper addsWhat is already known on the subjectResearch indicates that people with dementia develop dysphagia and mealtime difficulties as dementia progresses. SLTs often manage these, but there is no research on the effective assessment and management procedures, or guidance on best practice.What this paper adds to existing knowledgeThis paper provides an understanding of the variation in practice across the UK and ROI. Respondents described barriers to delivering an effective service and frequently linked these to the SLTs' resources as well as service constraints.What are the potential or actual clinical implications of this work?These findings support the need for future research to develop guidelines for SLT practice in this area. They also support the need to examine resource allocation and workforce management to enable SLTs to manage dementia‐related dysphagia and mealtime difficulties effectively. [ABSTRACT FROM AUTHOR]

Background & Objective: Epidermolysis bullosa (EB) is the term used for a group of genetic skin fragility disorders. For those living with EB, pain represents a constant challenge, with blistering and tasks such as changing dressings, adding to the distress. This paper focuses on describing and exploring the health‐care needs of children, adults and families who are affected by EB. The specific aim of the paper is to identify the needs of the EB population with a view towards informing the development of a community liaison service to support adults living with EB and the parents/carers of children living with EB. Setting and Participants: Interviews with six adults and the parents of eight children with EB were conducted. The data were analysed thematically. All participants were resident on the island of Ireland and are therefore reflecting on services in this geographic region. Results: Participants' needs were grouped into five themes: support managing physical health‐care issues; access to community/home‐based services; EB‐specific information and psychosocial support; effective interaction with health‐care professionals; and advice regarding benefits and entitlements. Discussion and Conclusions: This article represents the health‐care needs and preferences of a broad spectrum of those with EB, highlighting the need for a comprehensive service regardless of the severity of the condition. [ABSTRACT FROM AUTHOR]

Irish Travellers are a minority ethnic group within the Irish state with a distinct culture and set of traditions. Travellers experience mental health inequalities, high rates of mental ill health, and structural and individual barriers to mental health supports. A Traveller Mental Health Liaison Nurse (TMHLN) was introduced in a healthcare region in Ireland to provide greater mental health‐related support to Travellers. This paper presents a description of the TMHLN role following a multi‐stakeholder evaluation. The research design was descriptive qualitative and the findings are reported using COREQ criteria. Thirty‐four key stakeholders were interviewed individually or as part of focus groups. Thematic analysis generated two broad themes: the role context, and the specific activities of the role. Mental health nursing experience and understanding of local issues and services were key, as was use of language, building trusting relations, creating the metaphorical, and having the physical, space for working. Specific activities involved in‐reach and outreach work, including one‐to‐one mental health support provision, delivery of education/training sessions to Travellers and service providers, (re)establishing links to specialist services, integrated and interagency working, and promoting cultural competency. The findings set out a role with a greater emphasis on the use of recovery technologies, having an emphasis on psychosocial interventions and self‐care, and less focus on biomedical technologies, signs and symptoms, and clinical outcomes. This study contributes to knowledge on the role of a MHLN as this relates to working with marginalized minority groups. [ABSTRACT FROM AUTHOR]

This paper critically examines the relationship between statutory family support and child protection using the case study of Ireland. It builds on the work of Devaney and McGregor (2017) to offer an additional contribution to existing frameworks for practice through adapting the Hardiker Exton and Barker (1991) model of prevention. Using evidence from current Irish developments, the case for moving away from linear and simplistic differentiation of family support and child protection is made. Evidence from three main sources in Ireland is presented to develop the argument. This evidence includes the Child Care Law Reporting project (Coulter, 2015, 2018); a recent evaluation of a family support practice model called Meitheal (Rodriguez Cassidy and Devaney, 2018) and recent findings about public awareness of family support (McGregor and NicGabhainn, 2018). We argue that special attention should be paid to families "in the middle" who are in need of both support and protection and propose an adapted version of Hardiker et al. model to aid in this work. We identify what should happen at different levels for macrostructural to micropractice levels. We conclude that the learning from the Irish case study can be applied to an international context. [ABSTRACT FROM AUTHOR]

Accessible summary People with intellectual disability live within their community and will require services to support them at end of life., Often people with intellectual disability are denied access to essential services., This paper identifies the experiences of community nurses caring for persons with an intellectual disability and palliative/end-of-life care needs., Summary Palliative care services have developed over the years to support all persons with life-limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of palliative care services and integration of people with intellectual disability into their communities has resulted in an increased demand and greater diversity in the population groups accessing palliative care services. This study aims to describe the provision of community nursing support for persons with an intellectual disability and palliative/end-of-life care needs from the perspective of community nurses. A quantitative descriptive cross-sectional survey was employed. On receipt of ethical approval, data were collected through self-reporting questionnaires and descriptive analysis was conducted to describe frequencies and to identify patterns of the respondents using spss version 18. Only 85 people with an intellectual disability were referred to palliative/end-of-life care services over a 3-year period. Those delivering care expressed challenges including, understanding communication styles, late referrals, lack of time, knowledge and skills. Highlighted within the study were the benefits of liaison between family and professional and nonprofessional carers. Findings provide insight into the importance of teamwork, advance planning, knowing the person and best practice in providing palliative/end-of-life care for people with intellectual disability through collaboration. [ABSTRACT FROM AUTHOR]

The views and opinions of people who use mental health services are being increasingly acknowledged in relation to rights-based, socially-inclusive, and recovery-oriented care. However, little is known of the experiences of lesbian, gay, bisexual, and transgender ( LGBT) people in this respect. The aim of the present study was to explore the experiences and needs of LGBT people in relation to mental health services. The study was an exploratory design utilizing mixed methods. Both quantitative and qualitative data were collected using a survey instrument ( n = 125) and in-depth semistructured interviews ( n = 20) with a sample of people who had completed the survey. This paper will report on the findings from the interview data. The data were thematically analysed, and the main themes that emerged included accessing services, treatment choices, mental health service experiences, and other supports. The findings inform the discussion, and recommendations are made in terms of future mental health practice, education, and research. [ABSTRACT FROM AUTHOR]