'In the shower crying but we came back in the following day and did it all again'. Distress and resilience in care home staff during the COVID-19 pandemic- A qualitative interview study.

BACKGROUND: Care homes (long-term care facilities) were profoundly impacted early in the COVID-19 pandemic, both in terms of resident mortality and restrictions for infection control. This study investigated the impact on the emotional well-being of care home staff of challenges faced at this time, and the strategies used to manage them. METHODS: Semi-structured interviews conducted October 2020-June 2021 with care home staff and health service staff working with them explored the impact of the early waves of the COVID-19 pandemic (March 2020-June 2021). Interview data were analysed using reflexive thematic analysis. RESULTS: Interview participants were 16 care home staff and 10 health service staff. Analysis generated four key themes: 1)Anxiety and distress, 2)Overwhelming workload, 3)Pulling through; and 4)Resilience in a time of crisis. Care home staff experienced Anxiety and distress due to uncertainty of what to expect; witnessing illness and deaths of residents; concerns regarding their own health, and sometimes feeling their work was under-recognised. They also experienced an Overwhelming workload due to infection control measures, caring for sick residents and reduction in external healthcare support. Our theme of Pulling through reflects the peer support and problem-solving strategies with which care home staff managed the impact of the pandemic, along with a sense of responsibility and meaning towards their work. An overarching theme of Resilience in a time of crisis drew on the other three themes and describes how many staff managed, maintained, and often increased their work despite the challenges of the pandemic. Participants also described increasing emotional fatigue as the pandemic continued. CONCLUSIONS: This paper builds on literature on the emotional impact of the pandemic on care home staff, also exploring ways that staff responded to this impact. These findings can help inform planning for future crises including disease outbreaks, and raise important questions for further work to develop pandemic preparedness in care homes and beyond. They also raise wider questions about the current cultural status of care work, which may have exposed care home staff to greater risk of distress, and which contrasts with the professionalism and responsibility shown by staff in response to pandemic challenges.

'Thank goodness you're here'. Exploring the impact on patients, family carers and staff of enhanced 7-day specialist palliative care services: A mixed methods study.

BACKGROUND: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. AIM: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. DESIGN: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. SETTING/PARTICIPANTS: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). RESULTS: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). CONCLUSIONS: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff.

Sensitivity to change of the Rheumatoid Arthritis Self-Efficacy scale (RASE) and predictors of change in self-efficacy.

OBJECTIVES: Patient education in rheumatoid arthritis (RA) aims to improve health outcomes by prompting people to adopt self-management behaviours. One precursor for initiating behaviour change is self-efficacy (SE), a belief that you can do a task. This study tested the sensitivity to change of a new scale to measure SE for self-management in people with RA, the Rheumatoid Arthritis Self-Efficacy scale (RASE). Exploratory analysis examined potential predictors of change in SE. METHODS: People with RA at 11 rheumatology centres, who had accepted an education programme as part of clinical care, completed questionnaires at baseline, and two and eight weeks after their programme end. Programmes were not standardized, as this was a pragmatic study in clinical practice. RESULTS: A total of 128 patients participated. After controlling for baseline scores, the RASE showed small but significant improvements in SE from baseline (RASE 107.57, CI 105.42-109.72) to two weeks after programme end (RASE 110.80, CI 108.60-112.99), and eight weeks (RASE 110.62, CI 108.40-112.85, p<0.001). Standardized response means, calculated both by absolute and percentage change, were 0.339 and 0.371 at two weeks after programme end, and 0.321 and 0.352 at eight weeks. Changes in the RASE were associated with behaviour initiation at two and eight weeks (r=0.419, r=0.342, p<0.001). No substantial predictors of change in SE could be identified. CONCLUSIONS: The RASE is sensitive to change in a cohort of people with RA in the UK receiving education programmes as routine clinical care. Exploratory analysis did not identify clinical or psychological factors that predict change in SE, suggesting that programmes should not be restricted to particular patients.

Self-efficacy as an appraisal that moderates the coping-emotion relationship: associations among people with rheumatoid arthritis.

The way a coping strategy is expressed might depend on the nature of underlying efficacy expectations. For example, a cognitive coping strategy may have different content depending on efficacy beliefs underpinning the strategy's formulation and application. As such, self-efficacy (SE), as an appraisal, may moderate relationships between coping and outcomes: coping effects may differ depending on SE. This process was examined in 127 rheumatoid arthritis patients attending routine patient education/self-management programmes. Participants completed questionnaire measures of SE, coping, anxiety and depression at baseline and at 8 weeks follow-up. Regression analyses focused on coping and SE change variables, and their concurrent association with measures of change in anxiety and depression. Results highlighted contributions to these emotional variables from interactions between coping and SE. The nature of associations between coping and emotional outcomes was found to differ according to efficacy appraisals. This may have implications for clinical practice in that the adaptive significance of adjustment efforts may differ according to underlying SE.

Patients' perceptions of fatigue in rheumatoid arthritis: overwhelming, uncontrollable, ignored.

OBJECTIVE: Fatigue is commonly reported by patients with rheumatoid arthritis (RA) but is rarely a treatment target. The aim of this study was to explore the concept of fatigue as experienced by patients with RA. METHODS: Fifteen patients with RA and fatigue (> or =7 on a 10-cm visual analog scale) were individually interviewed and asked about the description, cause, consequence, and management of fatigue. Transcripts were systematically analyzed by 2 researchers independently, relevant phrases were coded, and earlier transcripts were checked for the emerging codes. A random sample of analyses were independently reviewed. A total of 191 codes arising from the data were grouped into 46 categories and overarching themes. RESULTS: Vivid descriptions reflect 2 types of fatigue: severe weariness and dramatic overwhelming fatigue. RA fatigue is different from normal tiredness because it is extreme, often not earned, and unresolving. Participants described physical, cognitive, and emotional components and attributed fatigue to inflammation, working the joints harder, and unrefreshing sleep. Participants described far-reaching effects on physical activities, emotions, relationships, and social and family roles. Participants used self-management strategies but with limited success. Most did not discuss fatigue with clinicians but when they did, they felt it was dismissed. Participants held negative views on the management of fatigue. CONCLUSION: The data show that RA fatigue is important, intrusive, and overwhelming, and patients struggle to manage it alone. These data on the complexity of fatigue experiences will help clinicians design measures, interventions, and self-managment guidance.

What does "disability" mean for medical students? An exploration of the words medical students associate with the term "disability".

CONTEXT: Disability teaching is a core theme in undergraduate medical education. Medical students bring a range of experiences of disability to their medical training. AIM: The principal aim of this study was to explore the words that medical students associate with the term "disability" and to consider how the resulting information could inform teaching. A secondary aim was to see if a short disability course changed the word associations. METHODS: Students were asked to write down 2 words that came to mind when they heard the word "disability", before and after a 4-day course in disability. Words from 4 cohorts were analysed by frequency and the following word dichotomies: visual icons/personal attributes; loss/enabling, and medical model/social model. A random sample of students took part in focus groups at the beginning and end of the course. RESULTS: A total of 381 students provided 667 before-course words and 189 students provided 336 after-course words. Before the course, words denoting visual icons of disability, and loss were prominent, accounting for 85% of the words, and 74% of the words describing personal attributes were negative. Focus group responses at this stage reflected an eagerness to help but patronising terms were prominent, along with concern about political correctness. Students also expressed nervousness about encountering disabled people. In response, teaching was adapted to make it more learner-focused, to offer a safe environment in which students can test out their language, to build on the positive associations and to develop a range of pre-course creative activities with disabled people. After the course a considerable and significant shift in emphasis was observed, with a reduction in the use of visual icon words, an increase in words denoting enablement, and an increase in words relating to the social model of disability and to positive personal attributes (P < 0.001). Focus group participants at this stage reported greater confidence in approaching disabled people but continued to question political correctness. CONCLUSIONS: Medical students associate disability predominantly with depersonalised or negative words. A short disability course appears to change these associations. Reasons for this and implications for teaching are discussed.

Clinical and psychological outcomes of patient education in rheumatoid arthritis.

OBJECTIVE: Evidence that patient education improves outcome in self-selected patients is often based on studies using patients with a mixture of diagnoses (primarily osteoarthritis) and where the education is delivered in a community setting. This study explored whether hospital outpatients with rheumatoid arthritis (RA) who were offered a self-management programme showed a similar response. METHODS: A randomized controlled trial was undertaken of either observation or observation plus an educational intervention of five sessions (12.5 hours) designed to enhance self-management. Pain and self-efficacy for pain were the primary outcome measures. These and other standardized assessments were made at 0, 4, 8 and 36 weeks for a variety of psychological and disease states. Knowledge of RA and its treatment was measured at 0 and 4 weeks using a multiple-choice questionnaire. RESULTS: Sixty-eight of 79 randomized patients provided adequate data. In those randomized to be offered education, knowledge of RA and its treatment increased by 18% compared to 9% in controls (p = 0.058). Self-efficacy for pain improved between weeks 0 and 4 by 10.3% (p = 0.015) in those offered education, and by 14.1% in those who were offered and accepted education (p = 0.001) but the difference from controls was not maintained after four weeks. There were no significant differences between groups in pain or in any of the remaining variables. Most patients reported that the education had been helpful. CONCLUSIONS: Patients offered education gained knowledge and reported personal benefit, but only improved in self-efficacy for pain and only for a short time. RA patients drawn from hospital outpatient clinics and allocated to an educational intervention may not gain changes in health status as measured by the instruments employed in this study.