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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]

There is a limited understanding about how an association with those that download Child Sexual Abuse Material (CSAM), a highly stigmatized crime, impacts the lives of their innocent family members. Non-offending family members are often considered a valuable protective resource for offender desistance and in safeguarding children from abuse. Therefore, the present study aimed to explore the lived experiences of female family members of CSAM offenders in Ireland and the United Kingdom to both identify and target areas for intervention thus ameliorating their ability to protect. A qualitative research design was adopted, and data analyzed via reflexive thematic analysis. Fifteen individuals self-selected for participation and interviews resulted in the identification of three key themes: Shattered Worldview, The Injured Self; Contamination by Association. The analysis highlighted how non-offending family members experienced considerable shame, trauma, and stigma with consequences that reached into every aspect of their lives. The findings are discussed in the context of the limited available literature along with research implications and recommendations for both policy and practice. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to explore how young people in child and adolescent mental health services (CAMHS) in the UK, Ireland, The Netherlands and Croatia, experienced leaving CAMHS and identified a range of factors impeding optimal discharge or transition to adult mental health services (AMHS). Design/methodology/approach: Interviews about discharge or transition planning, including what information was provided about their ongoing mental health needs, undertaken with 34 young people aged 17–24, all previous or current attendees of CAMHS. Some interviews included accounts by parents or carers. Data were thematically analysed. Findings: A number of previously well-documented barriers to a well-delivered discharge or transition were noted. Two issues less frequently reported on were identified and further discussed; they are the provision of an adequately explained, timely and appropriately used diagnosis and post-CAMHS medication management. Overall, planning processes for discharging or transitioning young people from CAMHS are often sub-optimal. Practice with regard to how and when young people are given a diagnosis and arrangements for the continuation of prescribed medication appear to be areas requiring improvement. Originality/value: Study participants came from a large cohort involving a wide range of different services and health systems in the first pan-European study exploring the CAMHS to adult service interface. Two novel and infrequently discussed issues in the literature about young people's mental health transitions, diagnosis and medication management were identified in this cohort and worthy of further study. [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]

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Background: The use of quality-adjusted life years rests on the assertion that the objective of the health care system is to improve health. Aim: To elicit the views of expert stakeholders on the purpose and evaluation of supportive end of life care, and explore how different purposes of end of life care imply the need for different evaluative frameworks. Design: Semi-structured qualitative interviews, analysed through an economic lens using a constant comparative approach. Participants: Twenty professionals working in or visiting the United Kingdom or Republic of Ireland, with clinical experience and/or working as academics in health-related disciplines. Results: Four purposes of end of life care were identified from and are critiqued with the aid of the qualitative data: to improve health, to enable patients to die in their preferred place, to enable the patient to experience a good death, and to enable the patient to experience a good death, and those who are close to the patient to have an experience which is as free as possible from fear, stress and distress. Conclusion: Managing symptoms and reducing anxiety were considered to be core objectives of end of life care and fit with the wider health service objective of improving/maximising health. A single objective across the entire health system ensures consistency in the way that resource allocation is informed across that entire system. However, the purpose of care at the end of life is more complex, encompassing diverse and patient-centred objectives which we have interpreted as enabling the patient to experience a good death. [ABSTRACT FROM AUTHOR]

Family building by bisexual mothers is a neglected area of research, yet this is an important aspect of life course development that may reciprocally influence the sexual identity development of bisexual women and family processes around parenting. Family map drawings (genograms) and interview data were collected from eight cisgender women from the United Kingdom and Republic of Ireland who spoke about their bisexual parenting experience and family relationships. Thematic narrative analysis indicates that participants depict both heteronormative (traditional) extended kinship networks (radiating out from a family core centering on them and their children) and family of choice network features. Nonetheless certain features appear to be more indirectly presented on some participants’ family maps: namely, complex or marginalized (erased) relationships with additional partners that may sustain sexual identity but contradict both heteronormative and homonormative presentations of family life. Our discussion considers the difficult issues bisexual mothers face in maintaining both their family relationships and a marginalized sexual identity. [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]