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Background: People with profound and multiple intellectual disabilities (PMID) have high and intensive support needs that ordinarily place significant strain on family carers. This was further heightened by the removal of many external supports during the COVID-19 pandemic. We sought to explore the experiences of family carers of people with PMID during the COVID-19 pandemic and understand what the longer-term impact might be on their lives. Methods: Focus group interviews (n = 32) were conducted with family carers (n = 126) from the four countries of the UK and the Republic of Ireland. Participants were asked questions relating to their experiences of the COVID-19 pandemic, coping strategies, and challenges faced. All focus groups were conducted using the online platform, Zoom. These were audio recorded, transcribed verbatim and analysed employing inductive thematic analysis. Findings: Three main themes were generated from the data including (1.0) COVID-19 as a double-edged sword (2.0), The struggle for support (3.0), Constant nature of caring. These included 11 subthemes. (1.1) 'COVID-19 as a catalyst for change', (1.2) 'Challenges during COVID-19: dealing with change', (1.3) 'Challenges during COVID-19: fear of COVID-19', (1.4); 'The online environment: the new normal' (2.1) 'Invisibility of male carers', (2.2) 'Carers supporting carers', (2.3) 'The only service you get is lip service: non-existent services', (2.4); 'Knowing your rights' (3.1) 'Emotional response to the caring role: Feeling devalued', (3.2) 'Emotional response to the caring role: Desperation of caring', (3.3) 'Multiple demands of the caring role.' Conclusions: The COVID-19 pandemic presented immense challenges to family carers of people with PMID but also provided some opportunities. Families had already struggled to receive many of the supports and services to which they were entitled to only to have these removed at the onset of the pandemic. The experiences of male carers have been largely absent from the literature with this research showing they want to be included in decision making and require tailored support services. Service providers should see the end of the COVID-19 pandemic as providing opportunity to re-examine current provision and design services with family carers. As the direct threat from COVID-19 diminishes and the experiences of those who lived through this period come to the fore, there is a need to re-examine current models and provision of support to family carers to better meet their needs. [ABSTRACT FROM AUTHOR]

Background: Family carers of people with profound and multiple intellectual disabilities (PMID) experienced a reduction in healthcare services due to the COVID-19 pandemic. Many subsequently turned to Non-Governmental Organisations who worked to support families. However, little research has sought to capture the experiences of family carers or identify effective interventions which might support them. To address these concerns we explored the views of Non-Governmental sector workers across the UK and Ireland who supported families people with PMID during the COVID-19 pandemic. We also sought to explore their views on the characteristics of online support programmes for family carers. Methods: This study employed a qualitative design using focus groups with participants (n = 24) from five Non-Governmental Organisations across the UK and Ireland. A focus group guide included questions on challenges, supports, coping and resources which helped during lockdown restrictions. Focus groups were held online, were audio recorded and transcribed verbatim. The resulting transcripts were pseudonymised and subjected to thematic analysis. Findings: Four themes were identified (i) 'mental and emotional health', (ii) 'they who shout the loudest' (fighting for services), (iii) 'lack of trust in statutory services' and (iv) 'creating an online support programme'. Mental and emotional health emerged as the most prominent theme and included three subthemes named as 'isolation', 'fear of COVID-19' and 'the exhaustion of caring'. Conclusions: The COVID-19 pandemic has increased the vulnerability of family carers who were already experiencing difficulties in accessing services and supports for their families. While Non-Governmental Organisations have been a crucial lifeline there is urgent need to design services, including online support programmes, in partnership with family carers which adequately address their needs. [ABSTRACT FROM AUTHOR]

Background: Providing care and support for a person with intellectual disabilities can be challenging and may negatively impact on family carers' health and wellbeing. A online support programme was co-designed with charitable organisations and family carers, to help meet the mental health and wellbeing needs of family carers., Objective: To test the acceptability of a newly developed online support programme for carers of people with profound and multiple intellectual disabilities., Methods: A sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents Scale was distributed to family carers across the United Kingdom and Ireland who had viewed the Carers-ID.com intervention. Participants were then invited to take part in an online interview. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol., Results: Seventy family carers (47 female, 23 male) responded to the acceptability survey, with 10 (7 female, 3 male) taking part in interviews. Carers expressed high levels of programme acceptability (mean = 75.43 out of 88). Six themes were generated from interviews with family carers; i) time is precious, ii) the breadth and depth of module content, iii) it was somebody's experience; it was meaningful, iv) won't work for everyone, v) representation: people I could identify with, and vi) module specific suggestions for future changes. Based on our triangulation, four areas of convergence were identified: programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability., Conclusions: To be acceptable, online interventions for carers of people with intellectual disability need to be accessible, understandable and easy to use, as carers' free time can be limited. It would be important to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Linden et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Oesophageal cancer has a reputation for poor survival, and a relatively high risk of major postoperative morbidity and mortality. Encouragingly, a recent international cancer registry study reports a doubling of survival outcomes in Ireland over the last 20 years. This study focused on both oncologic and operative outcomes in patients treated with curative intent requiring surgery at a high-volume center., Methods: All patients undergoing surgery or multimodal therapy with curative intent from 2009 to 2018 were studied. All data was recorded prospectively and maintained internally. The period 2009-2013 was compared with 2014-2018 to monitor any change in trends., Results: Four hundred and seventy-five patients (adenocarcinoma 77%, mean age 65; 76% male; 64% neoadjuvant therapy) underwent open surgical resection, 54% via en bloc 2-stage, 19.8% en bloc 3-stage, and 26.5% by a transhiatal approach. New onset atrial fibrillation was the commonest index complication, in 108 (22.7%), 80 (18%) developed suspected pneumonia/respiratory tract infection, 20 (4.2%) an anastomotic leak, and 25 (5.2%) a chyle leak. The 90-day mortality rate was 1.2% and 0.8% at 30 days. The median survival was 77.17 months, with a 5-year survival of 56%., Conclusion: Consistent with registry data on population survival for oesophageal cancer, this study highlights markedly improved survival outcomes in patients treated curatively, reflecting international trends, as well as low mortality rates; however, cardiorespiratory complications remain significant.

Background: The Medical Research Council vitamin trial highlighted the importance of folic acid in the prevention of neural tube defects. Since 1993, the Irish Department of Health has recommended periconceptional folic acid supplements. The objective of this study was to document the knowledge and behaviour of women in child-bearing years to periconceptional folic acid., Methods: A cross-sectional community-based survey was conducted in Dublin using an interviewer administered questionnaire., Results: A total of 335 women took part in the study, a response rate of 84 per cent. Approximately two-thirds (213/ 335, 63.6 per cent) had heard of folic acid. Knowledge was significantly associated with higher social class and higher education (p < 0.05). Few (18/335, 5.4 per cent), had been advised to take folic acid before pregnancy. Only 9/335 (2.7 per cent) of the women in the study were currently taking folic acid supplements. Three-quarters (75.9 per cent) of the group would be willing to take periconceptional folic acid supplements if they believed it would reduce the risk of malformations. The majority (77.4 per cent) would prefer to take folic acid in tablet form rather than have it added to food., Conclusions: This study shows that few women in child-bearing years in Dublin have been advised on folic acid, and very few are taking supplements. However, if advised appropriately the majority would be willing to take periconceptional folic acid in tablet form.