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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: As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well‐being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS‐TILDA) provides a unique insight into the health and well‐being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS‐TILDA Carer's Study. Methods: The IDS‐TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3‐yearly cycle. The family carers complete a self‐administered, mixed‐methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS. Findings: In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard. Conclusions: There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well‐being as they provide care for an increasingly ageing sibling. Accessible Summaries: When the parents of people with intellectual die or can no longer provide care and support, brothers and/or sisters may take over the role.Little is known about the lives of these brothers and sisters and whether they need support.Our study asks brothers and sisters about their lives, their health and the good and more difficult things about being a carer.This paper reports on the results of four surveys over 9 years.Most brothers and sisters felt that their health was good but because many reported health problems, more support should be available to brothers and sisters who are carers. [ABSTRACT FROM AUTHOR]

Background: People with post‐stroke aphasia (PWA) are more likely to experience serious mood disorders compared with those without. Emotional regulation may be important for influencing life participation after stroke. Understanding emotional regulation in the context of aphasia is important for promoting personally defined recovery, psychological well‐being and life participation. Aims: To explore how individuals experience and regulate negative emotional responses to aphasia as part of re‐engaging with life. Methods & Procedures: In‐depth semi‐structured qualitative interviews with 14 PWA were conducted. The focus and design were developed with public and patient involvement contributors. Reflexive thematic analysis was applied. Outcomes & Results: Analysis generated three themes, which captured inherent diversity across participants in terms of emotional experiences, responses and regulation strategies: (1) emotional upheaval at all stages of recovery; (2) regulating emotional upheaval; and (3) discerning possibilities for life participation. Emotional regulation occurred both within and without the context of formal support services. Conclusions & Implications: Individuals may be differently (en)abled in responding positively, with implications for aphasia psychological support and self‐management interventions. The findings may inform future interventions to optimize well‐being and personally meaningful outcomes for PWA. WHAT THIS PAPER ADDS: What is already known on the subject: PWA experience significant psychosocial upheaval and are at risk of mood disorders. Emotional regulation may be important for influencing one's emotional state, social participation and relationships after stroke. There is a need to better understand the ways in which PWA experience and regulate their emotions to develop better support for personally defined recovery. What this paper adds to existing knowledge: PWA may experience significant and pervasive mood disorders in the long term after stroke. This may be compounded by worries for their children's well‐being. Some, but not all, regulate emotions by drawing on positivity, determination, gratitude or stoicism. Having (supportive) opportunities to experience the impact of aphasia is important for discerning helpful strategies and participation opportunities. What are the potential or actual clinical implications of this work?: Confronting altered abilities requires supportive, responsive opportunities sensitive to emotional responses. Opportunities for peer support and/or meaningful emotional support and compassion from family and friends are important therapeutic targets. Therapeutic input should pay attention to any familial and parenting concerns that may be compounding low mood. Although emotional regulation and recovery may occur without formal support, mental health services must be organized in such a way that PWA can access as needed. [ABSTRACT FROM AUTHOR]

Background: An increasing number of children in the UK and Ireland are growing up speaking more than one language. The many advantages of bilingualism are acknowledged; however, this increased linguistic diversity presents particular challenges for speech and language therapists (SLTs). The case is often more complex with speakers of minority languages such as Welsh and Irish, which are acquired almost exclusively in bilingual contexts. Lack of appropriate standardized assessments for bilinguals is a key issue for SLTs internationally; however, little is known about the practices, personal perspectives or wider challenges faced by SLTs in assessing minority language skills. We focus on SLTs working with English–Irish bilinguals across Northern Ireland (NI) and the Republic of Ireland (ROI) where status, use and exposure to Irish differ significantly. Aims: To investigate the perceptions and practices of SLTs in NI and the ROI in the assessment of bilingual English–Irish‐speaking children. Methods & Procedures: A 33‐item online survey was distributed to SLTs working with children in community settings in NI and the ROI. Outcomes & Results: A total of 181 SLTs completed the survey. The majority of respondents had bilingual English–Irish‐speaking children on their caseloads; however, less than one‐quarter had assessed Irish language skills. Responses indicate confusion as to whether best‐practice guidelines applied in this particular context where the majority of speakers have English as their first language and limited domains of exposure to Irish outside of the education system. Resources available to assess Irish language skills were found to be limited. Informal analysis of language samples emerged as the most popular assessment tool. SLTs in the ROI had a significantly higher level of competence in the Irish language than SLTs in NI. This reduced the challenge of assessment. Many SLTs reported scoring assessments standardized on monolingual populations when assessing English language skills in bilingual English–Irish‐speaking children. Conclusions & Implications: Our findings highlight the challenges faced by SLTs in meeting best‐practice guidelines in the assessment of speakers of minority languages such as Irish. Further work is needed to ensure clinicians and other professionals have access to information and enhanced training on bilingual language acquisition in minority language contexts and implications for assessment and diagnosis. This study underlines the need for further research on the acquisition of minority languages as well as the development of alternative assessment tools to assist SLTs in meeting the needs of this population. What this paper adds: What is already known on the subject: Existing research indicates that SLTs face challenges in assessing bilingual clients. Lack of assessment resources is a global issue, particularly with respect to minority languages. Emerging research indicates that SLTs and other professionals are dissatisfied with current resources for assessing Irish‐speaking bilinguals and are struggling to meet best‐practice guidelines. What this paper adds to existing knowledge: The status of the Irish language differs significantly between NI and the ROI, while English is the dominant language in both areas. This study provides the first exploration of current assessment practices for bilingual English–Irish‐speaking children as reported by SLTs across both regions. The challenges of assessing bilingual clients in many other countries are mirrored by SLTs in NI and the ROI. The majority of children acquiring Irish are doing so in a specific context: the immersion education setting. This raises uncertainty for SLTs about whether the definition of bilingualism actually applies. Despite clinicians and clients sharing the same majority language, the complexity of minority language assessment remains. What are the potential or actual clinical implications of this work?: SLTs require specific support and resources to help them meet the assessment needs of bilingual English–Irish‐speaking children. Ongoing education and training are required for clinicians and other professionals to facilitate understanding of the complexities surrounding bilingual speakers of minority languages and the application of best‐practice guidelines. A greater understanding of the context in which children are acquiring Irish and the impact this may have on their acquisition of English would further support clinicians in identifying speech, language and communication needs in this population. [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]

Research highlights the role of key actors and relationships in supporting the educational attainment and progress of children in care and care leavers. We know less about how relationships influence the educational journeys of people with care experience over time and how to support the educational progress and engagement of adults with care experience. The principle of "linked lives" is central to the life course perspective referring to the interdependence of human lives throughout the life course. This paper explores how the principle of linked lives can illuminate our understanding of how relationships positively influence the educational journeys of adults with care experience over time. Educational life history interviews were conducted with 18 care‐experienced adults (aged 24–36) in Ireland. Findings suggest that the principle of linked lives is a valuable conceptual tool for providing new insights on this issue. Four key themes were identified: (a) opportunities for educational support are present across the life course; (b) "family" is a central source of educational support; (c) there is intergenerational capacity for educational support; and (d) relationships beyond the "family" are supportive of education. Implications for practice, policy, and research are explored. [ABSTRACT FROM AUTHOR]

This paper draws on three studies conducted in Australia, Canada and Ireland which explore the factors influencing research utilisation in the child protection sector in each country. The paper recognises that research uptake is complicated by a number of factors. It also acknowledges critiques which cite the equally significant influence of ideologies, context, unpredictability, time constraints and political expediency. However, all three studies recognised the increasing importance of evidence-based practice. The methods used in the three studies were not identical but the frameworks used were sufficiently similar to enable the classification of both common and dissimilar barriers and facilitators to research use. Those which they identified were categorised into four types: individual, organisational, environmental and characteristics relating to the nature of research material. Implications were identified for policy makers, service providers and research producers. The point was made that we now live in a period where unprecedented means of knowledge transfer and exchange provide unique opportunities to improve the lives of children and families. Copyright © 2013 John Wiley & Sons, Ltd. Key Practitioner Messages Avail of opportunities to attend learning events., Draw on research findings when conducting assessments, writing reports, devising intervention plans, evaluating programmes and tendering for funding., Establish links with research centres., Become involved in the conduct of research., Support colleagues (champions) who display particular interest and motivation in the use of research evidence by recognising and/or rewarding effort., Avail of opportunities to undertake further study that includes a research component. [ABSTRACT FROM AUTHOR]

The worldwide growth in formal youth mentoring programmes over the past two decades is partly a response to the perception that young people facing adversity do not have access to supportive relationships with adults and positive role models in their communities to the degree they once had. Formal mentoring programmes facilitate the development of a friendship or ‘match’ between an older volunteer and a young person, with the objective of supporting the young persons’ personal and social development. Drawing on 66 semi‐structured interviews with young people, parents, mentors and caseworkers associated with nine youth mentoring matches in the Big Brothers Big Sisters Programme in Ireland, this paper analyses the forms of social support evident in the mentor–mentee relationships and highlights how the mentoring relationship was perceived to have impacted on the well‐being of the young people participating. The findings reflect the consensus in the mentoring literature that close, well‐established mentoring relationships have the potential to bring about meaningful change in the lives of young people. [ABSTRACT FROM AUTHOR]