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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 & 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]

Background: Critical care bed capacity per capita in Ireland is among the lowest in Europe. The COVID‐19 pandemic has put additional strain on an over‐stretched healthcare system. COVID‐19 community assessment hubs (CAHs) were established to prevent unnecessary admission to acute hospitals and to reduce infection spread. Objective: The aim of this study was to assess the effectiveness and acceptability of CAHs and identify how the service might be improved or adapted for possible future use. Design: This was a mixed methods study, incorporating co‐design with clinical stakeholders. Data collection was via an online survey and semistructured telephone interviews with staff and patients conducted between January and May 2021. Setting and participants: Thirty‐one patients completed the survey and nine were interviewed. Twenty interviews were conducted with staff. Results: The findings suggest that the CAH model was successful in providing a dedicated pathway for assessing patients with COVID‐19 symptoms, whilst mitigating the risk of infection. Patients were particularly positive about the timely, comprehensive and holistic care they received, as well as the accessibility of the clinics and the friendly attitudes of the staff. Staff welcomed the training and clinical protocols which contributed to their feelings of safety and competency in delivering care to this cohort of patients. They also highlighted the benefits of working in a multidisciplinary environment. Both staff and patients felt that the hubs could be repurposed for alternative use, including the treatment of chronic diseases. Discussion: This study describes staff and patients' experiences of these hubs. An unexpected outcome of this study is its demonstration of the true value of effective multidisciplinary working, not only for the staff who were deployed to this service but also for the patients in receipt of care in these hubs. Conclusion: This multidisciplinary patient‐centred service may provide a useful model for the delivery of other services currently delivered in hospital settings. Patient or Public Contribution: An earlier phase of this study involved interviews with COVID‐19‐positive patients on a remote monitoring programme. The data informed this phase. Several of the authors had worked in the CAHs and provided valuable input into the design of the staff and patient interviews. [ABSTRACT FROM AUTHOR]

Background: There are few examples of public patient involvement in policymaking for groups whose ability to participate may be affected by a disability, particularly for people with dementia and their family carers. Principles of engagement and inclusion in democratic processes are as important for these groups as other citizens. We used two innovative methods to increase involvement of people with dementia and family carers in the policymaking process in Ireland, specifically in relation to impending legislation on home care. Method: A Policy Café was co‐produced with people with dementia using a World Café methodology. A Carer's Assembly was co‐produced with caregivers of people with dementia using a citizen's assembly model. Results: Ten people with dementia discussed policy developments they wanted to see implemented in relation to diagnosis and home care. Twenty‐eight dementia caregivers prioritized four topics: home care; respite services; psychosocial supports; and financial supports. Film and illustrations were used to create accessible messages for policy‐makers to inform their decision making. Discussion: Involving people with dementia and carers in policy development requires time and creativity to facilitate and maximize their involvement. Co‐production is essential to ensure the priorities of participants are identified, expressed and communicated effectively. A cumulative sequence of events and messages can generate significant engagement with policy‐makers. Policy‐makers need to hear the direct and authentic voice of people with dementia and carers when faced with important policy decisions. Patient or public contribution: People with dementia and carers were involved in study design, data analysis and presentation. [ABSTRACT FROM AUTHOR]

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]

Introduction: Maternity services underwent much change during the COVID‐19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID‐19 pandemic on those experiences and perceptions of care. Methods: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first‐trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi‐structured interviews, virtually all due to COVID‐19 restrictions, between June 2020 and February 2021. These were audio‐recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. Results: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first—'Disconnected'—describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in‐person care was highlighted. Conclusion: Our analysis provides rich insights into the significant impacts that the COVID‐19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. Patient or Public Contribution: Members of the multidisciplinary RE:CURRENT Project Research Advisory Group (including four parent advocates, two of whom are co‐authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes. [ABSTRACT FROM AUTHOR]

Background: Modifiable factors such as substance use, lack of attendance at antenatal care, overweight or obesity and sleeping position are associated with a higher risk of stillbirth. This qualitative study aimed to explore women's experiences of modifiable factors during pregnancy and their awareness of stillbirth. Methods: Purposive sampling was implemented by hospital staff in a large tertiary maternity hospital in Ireland between November 2020 and March 2021. Women were approached during their stay in the hospital and were invited to participate in a semistructured interview 3–5 months later. Eligible women were primiparous, >18 years of age and had an uncomplicated pregnancy and delivery. Eighteen women who consented to be followed up were interviewed at 3–5 months postpartum. Thematic analysis was used to analyse the data. Results: Four themes were identified: attitudes towards behaviour change, awareness regarding stillbirth and risk factors, the silence around stillbirth and risks, and attitudes towards receiving information about stillbirth. Women spoke about behaviour change in terms of outcomes, and most changes (e.g., ceasing alcohol consumption) were perceived as easy to manage. Awareness of stillbirth was limited among the women interviewed, and the association between risk behaviours and stillbirth was not known by any woman. Results suggest that there is a silence around stillbirth, including in antenatal care, which hinders information provision. However, most women highlighted the value of receiving information and extra education about modifiable risk factors and stillbirth. Conclusion: There is a general lack of understanding of the link between behavioural risk factors and potential pregnancy outcomes such as stillbirth. Providing further information to women about stillbirth and providing additional support with behaviour change might contribute to enhancing preventive efforts. Patient or Public Contribution: Patients were involved in this study by providing their experiences of antenatal care which were used as primary data. [ABSTRACT FROM AUTHOR]

Introduction: The death of a baby is devastating for parents, families and staff involved. Involving bereaved parents in their baby's care and in the maternity hospital perinatal death review can help parents manage their bereavement and plan for the future. In Ireland, bereaved parents generally have not been involved in this review process. The aim of our study was to assess parents' perception of how they may be appropriately involved in the maternity hospital perinatal death review in ways that benefit them and the review process itself. Methods: Bereaved parents (n = 20) in Ireland were invited to take part in semistructured interviews. Thematic analysis was carried out on the interview transcripts. Results: Four main themes were identified based on the participants' views and opinions on how they experienced the review process and how they feel this process may be improved. The themes reflect the journey of the parents through the different stages of the review process: Throughout process; On leaving the hospital; Interaction with the hospital 'waiting in limbo'; Review itself. Identified subthemes highlighted essential aspects of this process and care provided to parents. For the parents, open, honest communication with staff, as well as having a key hospital contact was essential. Parents wished to provide feedback on their experience and wanted to be included in the review of their baby's death, in a way that was sensitive to their needs and the hospital's schedule. Conclusion: A respectful, flexible system that allows bereaved parents' involvement in their baby's perinatal death review and is tailored to their needs is essential. A collaborative process between staff and parents can highlight clinical areas in need of change, enhance lessons learned, improve bereavement services and may prevent future perinatal deaths. Public Contribution: Bereaved parents were interviewed for this study. [ABSTRACT FROM AUTHOR]

Introduction: A lack of knowledge about attention‐deficit/hyperactivity disorder (ADHD) can contribute to feelings of distress and difficulty in seeking and accepting an ADHD diagnosis. The present study uses a Delphi consensus design to investigate the psychoeducational needs of adults with ADHD and the information about ADHD they would like included in digital health interventions for adults with ADHD. Inclusion of perspectives of service users in developing such interventions ensures that they are evidence based and addresses the risks of engagement barriers. Methods: The expert panel consisted of 43 adults with ADHD (age range: 23–67 years). Panel members were asked to rate the importance of the proposed topics and provide additional suggestions. Suggested topics and topics that did not achieve consensus were included for ranking in the second round. Results: Interquartile ratings were used to determine consensus. A high consensus was achieved in both rounds, with an agreement on 94% of topics in the first round and 98% in the second round. Most topics were rated as important or essential. Conclusions: The findings highlighted that adults with ADHD want to learn about many different aspects of ADHD and the importance of considering their perspectives when developing psychosocial interventions. Findings can be applied when creating psychoeducational content for adult ADHD. Patient or Public Contribution: Adults with ADHD were recruited to the Delphi panel to use an experts‐by‐experience approach. In doing so, we are engaging service users in the development of a psychoeducational smartphone app. The evaluation of the app will involve interviews with app users. Additionally, the present study was developed and conducted with ADHD Ireland, a charity based in Ireland that advocates for people with ADHD. [ABSTRACT FROM AUTHOR]

Introduction: Miscarriage is one of the most common complications of pregnancy, and recurrent miscarriage affects approximately 1% of couples. The psychological impact of early pregnancy loss on women has been well documented in the literature; however, the burden of miscarriage on men remains largely unexplored. Methods: This qualitative research involved semi‐structured interviews with five men whose partners had experienced at least two consecutive miscarriages. Participants were recruited through an early pregnancy loss clinic in a large, tertiary maternity hospital. Interviews were recorded and transcribed verbatim and analysed thematically. Results: Recurrent miscarriage had a pronounced psychological impact on all the men interviewed, which worsened with each successive miscarriage. Three primary themes were developed from the data: (1) the deeply emotional experiences of men following recurrent miscarriage; (2) frustrations experienced during the provision of support following recurrent miscarriage; and (3) a sense of feeling unimportant. Lack of timely provision of information about miscarriage as well as lack of access to services were highlighted as deficiencies in the quality of care provided after recurrent miscarriage. Conclusion: The experiences of men after recurrent miscarriage are based largely on their assumed role as the protector and supporter of their partner, which often results in neglect of their own psychological needs. The support required by men is similar to that required by women, and greater access to information and services is needed to improve the experiences of men following recurrent miscarriage. Patient Contribution: Participants were recruited through the Pregnancy Loss Clinic at Cork University Maternity Hospital and were identified by specialist midwives. Participants were approached and interviewed by one of the researchers. Participation was voluntary and the men received no financial contribution for their time. [ABSTRACT FROM AUTHOR]

Background: There is some evidence that health and social care professional (HSCP) teams contribute to enhanced patient and process outcomes in increasingly crowded emergency departments (EDs), but the views of service users and providers on this model of care need investigation to optimize implementation. Objective: This qualitative study investigated the perspectives of key ED stakeholders about HSCP teams working in the ED. Methods: Using a participatory design, we conducted World Café focus groups and individual interviews in two Irish hospital sites with 65 participants (purposive sampling) including ED patients and carers/relatives, ED doctors and nurses, HSCPs and pre‐hospital staff. Data were thematically analysed using NVivo software. Results: Participants reported that ED‐based HSCP teams could improve quality and integration of care and staff experience (Theme 1) and would be appropriate for older adults with complex needs and non‐urgent complaints (Theme 2). Concerns were raised about operational and relational barriers to implementation (Theme 3), and changes in processes and culture were considered necessary for HSCPs to work successfully in the ED (Theme 4). In contrast to service providers, service users' concerns centred on the importance of positive communication and relations (Theme 5). Conclusions: Our study indicates potential acceptability of HSCP teams working in the ED, especially to care for older adults; however, operational and relational aspects, particularly developing interdisciplinary and integrated care, need addressing to ensure successful implementation. Differences in priorities between service users and providers (relational vs operational) highlighted the usefulness of gathering views from multiple stakeholders to understand ED processes. [ABSTRACT FROM AUTHOR]

Background: Community participation in primary care is enshrined in international and Irish health policy. However, there is a lack of evidence about how stakeholders work collectively to implement community participation within interdisciplinary teams; community perspectives are rarely captured, and a theoretical underpinning for implementation of community participation in primary care is absent. Objective: To conduct a theoretically informed, multiperspectival empirical analysis of the implementation of community participation via primary care teams (PCTs) in Ireland. Methods/Design/Participants: Participatory learning and action (PLA) focus groups and interviews were held with 39 participants across four case study sites within a nationally funded programme designed to enable disadvantaged communities to participate in primary care. Normalization process theory (NPT) informed data generation and analysis of how diverse stakeholder groups worked together to implement community participation via PCTs. Results: The various stakeholders had a shared understanding of the value of community participation on PCTs. Motivations to get involved in this work varied, but were strong overall. Challenges to enacting community participation on PCTs included problems with the functioning of PCTs and a lack of clarity and confidence in the role of community representatives at PCT meetings. Informal appraisals were positive, but formal appraisal was limited. Discussion and Conclusion: The implementation and sustainability of community participation on PCTs in Ireland will be limited unless (i) the functioning of PCTs is strong, (ii) there is increased confidence and clarity on community representatives' roles among all health‐care professionals, and (iii) more sophisticated methods for formal appraisal are used. [ABSTRACT FROM AUTHOR]