Search

Objective: During the COVID-19 pandemic, anxiety in people with multiple sclerosis (PwMS) may have increased; however, little is known about the various factors which influenced this. We aimed to (a) identify the psychosocial modifiable associates of anxiety in PwMS in Ireland and the United Kingdom and (b) explore experiences of anxiety during the pandemic. Method: A cross-sectional survey was developed using public and patient involvement in 2021. This included measures of anxiety (Hospital Anxiety and Depression Scale [HADS-A]), social support (Multidimensional Scale of Perceived Social Support [MSPSS]), multiple sclerosis control self-efficacy (Multiple Sclerosis Self-Efficacy scale [MSSE]), exercise habits (Godin Leisure-Time Exercise Questionnaire [GLTEQ]), MS acceptance (Acceptance of Chronic Health Conditions scale [ACHC]), and intolerance of uncertainty (Intolerance of Uncertainty Scale-12 [IUS-12]), with open-ended questions asking about experiences of anxiety during COVID-19. A hierarchical regression analysis investigated the extent to which anxiety could be predicted by psychosocial modifiable factors after controlling for sociodemographic factors and multiple sclerosis (MS) type, while reflective thematic analysis was used to analyze open-ended responses. Results: 287 PwMS completed the survey, with 58% reporting that their anxiety had increased during the pandemic. In order of magnitude, self-efficacy (β = −.41), intolerance of uncertainty (β =.35), social support (β = −.21), and exercise habits (β =.19) significantly predicted variance in HADS-A scores (p <.01). Themes describing sources of anxiety included personal health concerns, social concerns, and responsibilities/additional external burdens. In contrast, some PwMS reported that anxiety had decreased during COVID-19. Conclusions: While the generality of findings may be limited due to a predominately female sample of PwMS living in the United Kingdom and Ireland, results have the potential to inform the development of targeted interventions in rehabilitation psychology to reduce anxiety in this population. Impact and Implications: This study provides a valuable insight into understanding the experience of anxiety in people with multiple sclerosis (PwMS). A strength lies in its mixed-methods approach, in that both a quantitative analysis of the predictors of anxiety along with a qualitative analysis of the experience of anxiety during the COVID-19 pandemic are described. While a number of participants indicated improvements in their levels of anxiety during the pandemic, the majority reported experiencing increases in anxiety during this time. Our qualitative analysis suggests that this was primarily attributed to concerns around health, social factors, and additional burdens placed on PwMS during the pandemic. Results point to a number of psychological, social, and lifestyle factors that may reduce the experience of anxiety in this population and which have the potential to meaningfully targeted in rehabilitation interventions. Notably, interventions designed to enhance self-efficacy and increase tolerance of uncertainty are promising directions for future research. Given that less attention has been paid to ways that anxiety can be reduced in the context of multiple sclerosis, these findings are valuable in informing the provision of supports of this group specifically, while findings also have implications for those living with other chronic illnesses and disabilities more generally. [ABSTRACT FROM AUTHOR]

Aim: To gain a deeper understanding of what is important to nurses when thinking about shift patterns and the organisation of working time. Design: A cross‐sectional survey of nursing staff working across the UK and Ireland collected quantitative and qualitative responses. Methods: We recruited from two National Health Service Trusts and through an open call via trade union membership, online/print nursing profession magazines and social media. Worked versus preferred shift length/pattern, satisfaction and choice over shift patterns and nurses' views on aspects related to work and life (when working short, long, rotating shifts) were analysed with comparisons of proportions of agreement and crosstabulation. Qualitative responses on important factors related to shift preferences were analysed with inductive thematic analysis. Results: Eight hundred and seventy‐three survey responses were collected. When nurses worked long shifts and rotating shifts, lower proportions reported being satisfied with their shifts and working their preferred shift length and pattern. Limited advantages were realised when comparing different shift types; however, respondents more frequently associated 'low travel costs' and 'better ability to do paid overtime' with long shifts and 'healthy diet/exercise' with short shifts; aspects related to rotating shifts often had the lowest proportions of agreement. In the qualitative analysis, three themes were developed: 'When I want to work', 'Impacts to my life outside work' and 'Improving my work environment'. Reasons for nurses' shift preferences were frequently related to nurses' priorities outside of work, highlighting the importance of organising schedules that support a good work‐life balance. Relevance to Clinical Practice: General scheduling practices like adhering to existing shift work guidelines, using consistent and predictable shift patterns and facilitating flexibility over working time were identified by nurses as enablers for their preferences and priorities. These practices warrant meaningful consideration when establishing safe and efficient nurse rosters. Patient or Public Contribution: This survey was developed and tested with a diverse group of stakeholders, including nursing staff, patients, union leads and ward managers. Reporting Method: The Strengthening the Reporting of Observational Studies (STROBE) checklist for cross‐sectional studies was used to guide reporting. [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]

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]