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Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

Background: Fibromyalgia is a chronic pain condition which has recently been linked with eating, drinking and swallowing difficulties (dysphagia). However, to date, sample sizes within completed research are small and study designs heterogeneous, and therefore, little is known about the lived experiences of dysphagia among people with fibromyalgia. To go some way towards addressing this gap in the literature, this study collected and analysed the first‐hand experiences of the physical symptoms, the psychosocial impacts and environmental factors that influenced the lived experience of a sample of people living with fibromyalgia‐associated dysphagia. Methods: Qualitative semi‐structured interviews were conducted with adults with dysphagia and fibromyalgia. Reflexive thematic analysis was employed and themes were identified regarding the reported experience and impact of swallowing problems. The same researcher conducted the interviews and extracted all data, and a second researcher analysed a random sample of 5% of the data for accuracy, with no disagreements arising between the two researchers. Results: All participants (n = 8) reported the negative psychosocial impact of their dysphagia. Participants reported managing their dysphagia independently, primarily using compensatory strategies. Participants discussed feeling unsupported in healthcare interactions due to clinicians not understanding the occurrence, nature or impact of eating, drinking and swallowing difficulties. Participants also reported that they did not have access to evidence‐based management strategies that adequately addressed their fibromyalgia‐related swallowing problems. Conclusions: Despite minimal previous research in this area, findings here highlight the impact that dysphagia has on people with fibromyalgia. A broad range of physical symptoms were reported to have negative consequences across both social and emotional domains. The reported symptoms often required complex coping strategies and sometimes impeded participants from seeking suitable medical intervention from healthcare providers. There are both broad‐ranging implications of fibromyalgia‐associated dysphagia and reported poor perceptions of medical interactions for this cohort of patients. Therefore, there is evidently a need for clinical research into the management of this condition to develop patient‐centred care delivery options and to equip healthcare professionals with the knowledge and skills necessary to provide efficacious management to this group. Patient or Public Contribution: Before initiation of the qualitative interviews, the interview schedule was piloted with an individual living with fibromyalgia and dysphagia, with feedback provided on the appropriate wording and format of semi‐structured questioning. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic has had both a psychological and physiological effect on the human race. For those working in health care, particularly in critical care, the pandemic has put unprecedented strain on staff. Witnessing suffering during crisis in an organizational setting can be a traumatic experience and critical care nurses often risked, not only their own lives, but their psychological well‐being, so that those infected with the virus might have a better chance at survival. Aim: The aim of this study was to explore the challenges to mental health and psychological well‐being experienced by Critical Care Nurses during the COVID‐19 pandemic. Study Design: A longitudinal, qualitative study involving semi‐structured interviews with 54 critical care nurses across 38 hospitals in the United Kingdom and Ireland. Interviews were transcribed verbatim and analysed using thematic analysis. Results: Four key themes were identified which represent the challenges faces by critical care nurses during the COVID‐19 pandemic: Lack of control, Psychological trauma, Unexpected leadership, Public‐political betrayal. Conclusions: While public‐political praise may lead to a short‐term lift in morale for front line workers; where it is not accompanied by practical support in terms of appropriate equipment, leadership, emotional support and renumeration it is likely to be damaging in the longer term. Relevance to Clinical Practice: This study has provided a greater understanding of the factors which affected the well‐being and mental health of critical care nurses during a global pandemic. [ABSTRACT FROM AUTHOR]

Background: Cancer survivorship is associated with co‐morbidities including anxiety, depression and cardiovascular disease (CVD). Rehabilitative care post‐treatment is vital for survivors' psychological and physical well‐being. The present study aimed to investigate breast cancer survivors' attitudes towards their health post‐treatment; their awareness of co‐morbidities associated with treatment; and their awareness of support systems available. Methods: A qualitative research approach was employed, using semi‐structured interviews with breast cancer survivors from the UK and Ireland. Data were analysed using thematic analysis. Eight breast cancer survivors were recruited through purposive sampling. Results: Two themes emerged from the data: (1) health and rehabilitation post‐treatment, which included mental and physical health and a desire to control one's own health in survivorship as well as a discussion around co‐morbidities, and (2) access to support services in survivorship, which highlighted both positive and negative experiences of accessing support, as well as reasons for not accessing support in survivorship. Conclusions: Access to rehabilitation support, including diet, exercise and stress management, is key to survivorship. Rehabilitation and support services need to be more readily available for survivors to aid them in this journey and to educate them on the increased risk of conditions such as CVD with cancer treatment. Utilising current cardiac rehabilitation models could be a solution to provide a holistic cancer rehabilitation, thus providing the lifelong support that cancer survivors both want and need. Key points: Access to rehabilitation support, including diet, exercise and stress management, is key to survivorship; however, access to support differed and was lacking for many survivors. Longer‐term comorbidities of cancer treatment were not fully understood. Therefore, there is a need for rehabilitation and support services to educate survivors on the increased risk of conditions such as cardiovascular disease with cancer treatment. These services must also address long‐term risk through lifestyle factors, including diet and physical activity. Utilising current cardiac rehabilitation models could be a solution to provide a holistic cancer rehabilitation, thus providing the lifelong support that cancer survivors both want and need. [ABSTRACT FROM AUTHOR]

The phrase 'in it together' has been used liberally since the outbreak of COVID‐19, but the extent that frontline workers felt 'in it together' is not well understood. Here, we consider the factors that built (or eroded) solidarity while working through the pandemic, and how frontline workers navigated their lives through periods of disconnection. Semi‐structured interviews with 21 frontline workers, across all sectors, were conducted in the United Kingdom and Ireland. The qualitative data were analysed systematically using reflexive thematic analysis. The three themes identified in the data were: (1) Solidarity as central to frontline experiences; (2) Leadership as absent, shallow and divisive: highlighting 'us‐them' distinctions and (3) The rise of 'us' and 'we' among colleagues. Our research offers insights into how frontline workers make sense of their experiences of solidarity and discordance during the first year of the COVID‐19 pandemic, with relevance for government and organizational policy‐makers shaping future conditions for frontline workers. [ABSTRACT FROM AUTHOR]

Background: Implementing task specific training is a commonly reported challenge for less experienced therapists. A potential method to improve the ability of recent graduate and student therapists is to upskill regarding task specific training via an online education resource. Purpose: To evaluate the use and acceptability of the TRAIN program as an online learning resource for physiotherapists. Methods: Data from Google Analytics was sourced to determine use of the program and details about the users. Users of the TRAIN program were also invited to complete two surveys; prior to beginning and upon completion of the program. The surveys collected information about the demographics of the users, perceptions of usefulness of the online resource and overall sentiment. Results: Almost 6000 new users interacted with the TRAIN modules during the 15‐months study period. The surveys indicated a high level of usability (mean score 9/10, SD 1.5) and clinical utility (mean score 8.8/10, SD 1.6) of the TRAIN program. Perceived knowledge and user confidence in implementing task‐specific training was higher for those users completing the post compared to those completing the pre‐module survey (knowledge 1.9 and confidence 1.7 out of 10 points higher). Recurring comments in the open‐ended feedback pertained to the usefulness, clarity, and ease of use of the TRAIN program. Discussion and Conclusion: This study provides preliminary evidence supporting the use and acceptability of the TRAIN program as an online learning resource for physiotherapists. This further contributes to the growing body of literature indicating online learning is generally a well‐received teaching tool for physiotherapists. [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]

Aim: The aim of the study was to explore the incidence, use, and scope of patient diaries in paediatric intensive care units (PICUs) in the United Kingdom and Ireland. Design: This was an electronic survey sent to 30 PICUs in the United Kingdom and Ireland. Results: All PICUs (n = 30) responded, and 43% (n = 13) offered diaries. For those units that did not supply diaries, the reasons given were concerns around the legal and professional implication of using diaries. Parental/carer consent to use a diary was obtained informally (79%, n = 11), and once there was agreement to provide a diary to parents, diaries were usually started immediately (72%, n = 12). Parents were the main contributors to the diaries (94%, n = 17), and the diaries were populated with photographs (94%, n = 15), drawings (100%, n = 16), and stickers (94%, n = 15). The reasons for offering diaries were to fill gaps in memories, to engage with families, and to explain what has happened in lay language. The owner of the diary was reported to be the family (82%, n = 14) and the child (12%, n = 2). Conclusions: The use of patient diaries is an evolving intervention in paediatric intensive care settings in the United Kingdom and Ireland. This national survey has provided a clearer picture of how this intervention is used in the United Kingdom and Ireland. PICU patient diaries are used in a significant number of units, and how these are used is relatively standardized, although in some different ways from general ICUs. Relevance to clinical practice: This survey provides a baseline for future exploration, understanding, and promotion of patient diaries, as a well evaluated tool for the critically ill child and his or her family. [ABSTRACT FROM AUTHOR]

Background: There is increasing recognition that dysphagia has significant implications for a person's psychological well‐being, social participation and quality of life (QOL). However, a paucity of research exists regarding the clinical management of this area. To inform future research and the development of appropriate and beneficial resources and guidelines, a better understanding of the current practice of speech and language therapists (SLTs) in this area would be useful. This information will highlight current challenges to clinical practice and the ongoing development needs of the profession, which are, as of yet, undocumented. Aims: To determine the practices of SLTs when addressing QOL issues in individuals with dysphagia, the beliefs of SLTs regarding the impact of dysphagia on QOL, the current trends in assessing and managing QOL in dysphagia, and if variations in beliefs and practices in this area exist. Methods & Procedures: An anonymous cross‐sectional, non‐experimental survey study was used. The survey consisted of 18 questions exploring participants' beliefs and opinions regarding dysphagia and QOL, current clinical practice in the area, perceived facilitators and barriers, and education, training and development needs. The survey was created on Survey Monkey and disseminated by e‐mail link to SLT professional bodies. Purposive and snowball sampling were used and participants self‐selected based on the information provided alongside the e‐mail link. Inclusion criteria for the study were a qualification in speech and language therapy, proficiency in the English language, and access to a computer with the internet. Outcomes & Results: A total of 148 SLTs working across the UK, Ireland and South Africa completed the survey. Over 90% of respondents believe that dysphagia has a negative impact on QOL, but only 25% are currently satisfied with the amount of clinical time they can dedicate to this area. Staffing, resources, a lack of best‐practice guidelines and disease‐specific QOL assessment tools were cited as contributing factors. A number of facilitators and barriers to best practice were also highlighted. Based on these findings, professional development actions for the future are suggested. Conclusions & Implications: SLTs believe they have an important role to play in supporting QOL issues in dysphagia. However, it is reported that the area is currently under‐developed, under‐resourced and under‐supported. Increased awareness raising of the role of SLT, alongside the development of best‐practice guidelines and disease‐specific QOL assessment tools, will enhance the quality of care that can be offered in this area. [ABSTRACT FROM AUTHOR]

Understanding how survivors of complex trauma navigate towards resources can inform the design of interventions and health promotion strategies. However, there are little data on the resilience and help-seeking experiences of this group or others who have experienced institutional abuse in childhood. This empirical study sets out to illustrate the help-seeking experiences of Irish emigrant survivors of institutional childhood abuse (ICA). Twenty-two survivors of ICA were purposefully recruited from community organisations in the UK and data were collected via semi-structured interviews. As a result of negative initial help-seeking experiences in Ireland, most participants engaged in long periods of self-management and disclosed information about their childhood as part of a redress scheme in later life. Outside of this scheme, turning points, such as illness or family problems, and the needs of children were influential in seeking help. Peer support networks played an important role as a trusted signposting pathway towards formal interventions. Participants identified interpersonal barriers to formal help-seeking as helping professionals' failure to share control, insensitivity to identity loss and literacy issues, and the lack of explicit boundaries. The paper concludes with a discussion about the implications for research and future practice. Key Practitioner Messages: Turning points, such as illness and bereavement, and the desire to provide for children, influence the help-seeking of survivors of ICA., Irish emigrant survivors of ICA cite failure to share control, insensitivity to identity loss, literacy issues and the lack of explicit boundaries as barriers to help-seeking., General awareness of ICA can help practitioners in low-threshold services prevent against culturally insensitive practice., Peer support networks can provide uniquely trusted signposting towards formal interventions. [ABSTRACT FROM AUTHOR]

This paper explores a retrospective analysis of children's file data as a research method of gathering information on children's experiences of informal disclosure of child sexual abuse. This study extracted data from files where children were seen for a child sexual abuse evaluation in Ireland and the children were deemed to have given a credible account of abuse by the professionals concerned. A content analysis was conducted using themes identified in previously published research, based on direct interviews with children about their experiences of informal disclosure. The paper discusses the relative merits and limitations of this method, through reporting on the findings of the file analysis and comparing these findings with findings obtained from a smaller sub-sample of this sample of children, who were interviewed about their experiences of disclosure. It is suggested that this method is worth exploring with a larger sample size which would enable statistical analysis and thus explore the predictive factors influencing early informal disclosure. Frontline services can contribute to the knowledge base on what helps children tell through service-based research that uses data already collected from evaluation interviews with children, thus eliminating the need to interview children for research purposes. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Messages Frontline professionals gather useful data on a daily basis on informal disclosures of child sexual abuse., Practitioners can contribute to the knowledge base on informal disclosure by systematically gathering information from service users., We need more information on what helps children tell. We therefore need to explore innovative methods of gathering such information directly from children in ways that do not rely on interviewing children repeatedly yet include the child's voice. [ABSTRACT FROM AUTHOR]

There is a growing interest into how attachment theory can inform psychotherapeutic practice with adults. This study aimed to explore how a group of therapists with an interest in attachment theory use it in their work with adult clients. A cross-sectional qualitative design was adopted. Sampling, data collection and analysis procedures were guided by grounded theory principles. Semi-structured telephone interviews were conducted with 12 therapists from a variety of training backgrounds. Data were coded and developed into thematic categories. Six primary themes were identified to describe how attachment theory influenced the clinical practice of the sample through the following: (i) complementing other therapeutic models; (ii) providing a framework to understand the development of clients' mental health problems; (iii) working with different attachment styles; (iv) thinking about the therapeutic relationship as an attachment relationship; (iv) influencing the different stages of the therapeutic process; and (vi) influencing clinical service design and delivery. It is concluded that attachment theory can play a significant role in influencing the practice of therapists and can be usefully adopted to complement therapeutic processes irrespective of the therapist's dominant clinical orientation. Further research is needed to explore the views of clinicians from different theoretical orientations and to investigate the security of the client-therapist attachment within the context of therapeutic change processes. Copyright © 2015 John Wiley & Sons, Ltd. Key Practitioner Message Attachment theory may have implications for practice across a range of different types of therapy and may help therapists to bridge apparent differences between modality-specific formulation and techniques., Attachment theory can be used to understand the development of mental health problems. Therapists should assess and formulate clients' attachment styles, and these formulations should guide therapeutic approaches., Attachment theory provides a comprehensive framework for facilitating the therapist's attentiveness to relational issues and use of the therapeutic relationship as a fulcrum for change., The principles of attachment theory can be used to inform all stages of the therapeutic process, as well as the design and delivery of mental health services. [ABSTRACT FROM AUTHOR]

Introduction The expanding role of physiotherapists, with increasing use of services such as self-referral, means that demonstrating an ability to understanding and ask red-flag questions appropriately has never been more important. The present study investigated how physiotherapists define common red flags, how they ask red-flag questions, which red flags they routinely record and the importance that therapists attribute to individual red-flags. Methods In this qualitative study, an online questionnaire survey was circulated to physiotherapists using various UK special interests networks. A total of 98 physiotherapists participated in the study, the majority of whom worked exclusively in the National Health Service. Results In general, clinicians defined red flags for back pain in line with guidelines but there was little consensus on how therapists asked patients about red flags. Questioning often included undefined terminology and therapists not asking some red-flag questions. Additionally, the more recently recognized flags (vague, non-specific lower-leg symptoms; band-like trunk pain; decreased mobility) had less importance attached to them and were recorded less frequently. Conclusions If only certain red flags are being assessed, this may put patients at risk of having serious spinal pathologies going undetected. Thus, strategies encouraging therapists to ask all red-flag questions may be needed. The importance of the more recently recognized red flags may need to be emphasized to clinicians. Finally, the inconsistent way in which the red-flag questions were asked highlights a potential practical barrier to translating red-flag knowledge into clinical practice. There is a need to build on this work, using in-depth qualitative interviews, to gain a deeper understanding of how therapists understand and apply the red flags commonly used in back pain assessment. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]