ABSTRACT Background and Aims Healthcare research is an essential driver of evidence‐based practice, leading to improved service delivery and outcomes. Despite being integral to pharmacy (e.g., in driving safe and effective use of medicines), research engagement is relatively low. This service evaluation study aimed to assess pharmacy professionals' research engagement inclusive of capacity (opportunity and time) and ability (skills and knowledge), and to explore potential barriers and facilitators to research engagement. Methods The study was conducted at a single Mental Health and Community Trust in the UK between February and June in 2024. Data were collected in two phases: phase 1: an online survey assessed current research engagement, and phase 2: virtual individual interviews and a focus group explored in‐depth views on research engagement. All practising pharmacists and pharmacy technicians were eligible to participate and were invited via email through a senior pharmacist. Quantitative data were descriptively analysed, and qualitative data were audio‐recorded, transcribed and thematically analysed. As a service evaluation, no ethical approval was required. Results Of the 62 invited pharmacy professionals, 32 responded (52%, n = 20 pharmacists). Around 47% (n = 15) reported prior involvement in research activity/training. Most viewed research as relevant (63%, n = 20) and extremely valuable (72%, n = 23) to practice, and 47% (n = 15) expressed interest in engaging in future research. However, few expressed having confidence across a range of research skills. Seven interviews and one focus group were conducted. Three main themes were identified: research‐related views and experience, barriers to research engagement, and strategies to improve research engagement. Conclusion Overall, positive views on research were reflected. Current research involvement rate is low, as is the confidence in applying research to practice. Several barriers were identified, which require addressing to enhance research activity. Organisations therefore should assess research capacity and ability of their staff to identify encountered barriers to enhance research engagement.
OBJECTIVES:Assess individual hospital-based pharmacy professionals' (PP) research readiness (experience, skills, knowledge, capacity, capability). METHODS:A cross-sectional service evaluation study was conducted with practicing PPs across four NHS mental health trusts within the West and East Midlands region of England between February and June 2024. Each participating trust administered an identical online survey (adapted from a previous published research readiness survey) to their pharmacy teams. The survey captured participant characteristics, included mixed open and closed questions, and data related to research skills/knowledge, experience, confidence, and barriers to research engagement. This paper presents pooled analysis of these surveys with data descriptively analysed using SPSS software, and free text data analysed using content analysis by NVivo software. KEY FINDINGS:A total of 164 PPs were eligible to participate, with 88 professionals (54%) completing the surveys. Most reflected positive views on the value and relevance of research to pharmacy practice, with 74% agreeing that research should be incorporated into professional development. However, only 33% reported research experience and low confidence was expressed in the ability to conduct research-related activities. Free text responses identified four themes focusing on the benefits and relevance of research to practice, questions about research, and barriers to research engagement. CONCLUSIONS:Participants acknowledged the value, relevance, and benefits of research to pharmacy practice. However, several barriers were identified with gaps in research skills and confidence that should be addressed. Organizations need to work with their teams to develop strategies to overcome barriers and to instill a research supportive culture.
Abstract Background. Healthcare organisations that have a research culture within their practice (e.g. evidenced based and evidence informed practice) report better outcomes for their service users. There are however reported barriers to embedding research into practice. This includes time, knowledge, motivation, ability, resources, and access to organisational support. Psychological Services within the NHS regularly embed evidence-based practice as part of the care provision for their service users. However, at present little is known of the extent, capacity, and research readiness of those that practice within this sector. Aim. To understand capacity, engagement and research readiness within the psychological services team at an NHS trust within the UK. Methods. Mixed methods pilot study using cross sectional survey. Collecting both quantitative and qualitative data. 35 people were recruited from a pool of 89 people who attended a psychological services webinar in April 2024. Quantitative data was analysed on a descriptive level; qualitative data was analysed using thematic analysis. Findings and discussion. Results indicate the value in the use of a mixed method survey to assess research readiness and capacity to those within psychological services practice. Overall response rate was good (39%) with a 100% completion rate of all questions. Both the quantitative and qualitative data revealed that participants wish to engage in research but encounter barriers such as capacity and time. Respondents were also unsure on the level or organisational support for research engagement and activity, unsure on the pathways to secure research time (e.g. funding opportunities), and findings also illustrate issues around practitioner confidence in applying research skills. Our findings show the acceptability of assessing research readiness within psychological practice and highlight several areas of need for practitioners to facilitate full research engagement. These findings will now seed a larger more ambitious assessment of research readiness. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study did not receive any funding ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics committee/IRB of Midlands Partnership University NHS Foundation Trust waived ethical approval for this work I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors
BACKGROUND: Evidence-based practice in public health is essential for delivering appropriate and effective interventions to improve population health. Robust research underpins evidence-based public health, and it is therefore vital that local public health practitioners have sufficient knowledge and skills to apply research as well as undertake research within their locality. METHODS: This study aimed to assess individual research skills, knowledge, and confidence, as well as organisational support for research. Three local authority public health teams in England administered an internal service evaluation survey to their staff. Each survey included both closed (quantitative) and open ended (qualitative) items and obtained demographic information. Data from each participating local authority team were combined within a secondary data analysis utilising a parallel mixed method approach, reporting descriptive statistics, and deriving qualitative themes. RESULTS: Across the three participating teams a total of 228 practitioners were invited and 109 responded (48% response rate). Both quantitative and qualitative results showed a clear recognition of the value of research to public health practice, both in general (66% indicated relevance to their practice), and as a method to understand local population health needs. Practitioners also wished to have more research involvement (81% reported research should be part of their CPD) but reported a current low level of research engagement and activity (36% had reported previous involvement over the previous 3 years). Recognised barriers to research engagement included, at a practitioner level: a lack of research skills resulting in low research confidence; time and capacity; organisational barriers such as resource provision (e.g. training, scholarship); and a lack of awareness of existing support structures. CONCLUSIONS: Public health practitioners recognise the value of research to their practice but require greater support (both from within local authority structures and externally) to create the framework to enable sustainable evidence-based practice.
Many people living with dementia will at some point require help with personal care (e.g. support for eating/drinking, bathing, dressing, oral care, hair care, toilet use). Such provision can be associated with refusal and distress in care recipients, and can pose significant challenges for care providers. Whilst a growing body of research exists on personal care within formal settings (e.g. care homes, nursing homes), very little research has been conducted within informal settings. The aim of this study is to identify which factors are associated with challenges and difficulties in providing personal care within a family care setting. A UK wide cross-sectional survey was used to gather quantitative-based information and perspectives of family carers. Respondents were adults, UK based, who have direct experience of providing personal care to someone living with dementia. Survey measures included the presence of challenges and difficulties (dichotomous outcome variable), as well as measures about the family carer, the care recipient, the impacts of providing care, and the presence of help and support. Analysis involved the production of descriptive frequences and percentage proportions of each variable in relation to the outcome variable. In total 290 carers were included within the analysis, most provided personal care daily (68.3%), with 83.5% reporting challenges and difficulties. Notable associations with the outcome included higher levels of challenges and difficulties if the carer was younger, was male, experienced a change in the relationship with the care recipient, experienced negative aspects in provision, and were not aware of aids and adaptations. Whereas those who experienced lower levels expressed a religious faith, as well as those who belonged to an ethic minoritized community. No notable differences were identified dependent on the frequency of care, dementia type, or presence of long-term comorbidities in the carer. To our knowledge this is the first quantitative study to report on the factors associated with the challenges and difficulties on providing personal care within a family setting. Our results highlight the significant proportion of family carers who experience challenges and difficulties, and identify several factors that may be suitable for future intervention development.
Abstract Background Dementia has a major impact on individuals, their families and caregivers, and wider society. Some individuals experience a faster decline of their function and health compared to others. The objective of this systematic review was to determine prognostic factors, measurable in primary care, for poor outcome in people living with dementia. Methods Cohort studies set in the community or primary care, and examining prognostic factors for care home admission, cognitive decline, or palliative care were included. Databases were searched from inception to 17th June 2022. Identified papers were screened, the risk of bias assessed using Quality in Prognostic Studies (QUIPS) tool, and data extracted by 2 reviewers, with disagreements resolved by consensus or a 3rd reviewer. A narrative synthesis was undertaken, informed by GRADE, taking into consideration strength of association, risk of bias and precision of evidence. Patient and Public Involvement and Engagement (PPIE) and stakeholder input was obtained to prioritise factors for further investigation. Results Searches identified 24,283 potentially relevant titles. After screening, 46 papers were included, 21 examined care home admission investigating 94 factors, 26 investigated cognitive decline as an outcome examining 60 factors, and 1 researched palliative care assessing 13 factors. 11 prognostic factors (older age, less deprived, living alone, white race, urban residence, worse baseline cognition, taking dementia medication, depression, psychosis, wandering, and caregiver’s desire for admission) were associated with an increased risk of care home admission and 4 prognostic factors (longer duration of dementia, agitation/aggression, psychosis, and hypercholesterolaemia) were associated with an increased risk of cognitive decline. PPIE and other stakeholders recommended further investigation of 22 additional potential prognostic factors. Conclusions Identifying evidence for prognostic factors in dementia is challenging. Whilst several factors highlighted as of relevance by our stakeholder groups need further investigation, inequalities may exist in care home admission and there is evidence that several prognostic factors measurable in primary care could alert clinicians to risk of a faster progression. Registration PROSPERO CRD42019111775.
The introduction of Integrated Care Systems (ICS) in England aimed to increase joint planning and delivery of health and social care, and other services, to better meet the needs of local communities. There is an associated duty to undertake collaborative research across ICS partners to inform this new integrated approach, which might be challenging given that organisations span health, local authority, voluntary and community sector, and research. This study aimed to explore the appetite for collaborative Research and Innovation (R&I) across ICSs, potential barriers and solutions. This qualitative study involved semi-structured interviews with 24 stakeholders who held senior positions within organisations across two ICS areas (Staffordshire and Stoke-on-Trent; Shropshire, Telford and Wrekin). Interview transcripts were analysed using inductive and deductive analysis, first mapping to the Theoretical Domains Framework (TDF), then considering key influences on organisational behaviour in terms of Capability, Opportunity and Motivation from the COM-B Behaviour Change Wheel. There were fundamental limitations on organisational opportunities for collaborative R&I: a historical culture of competition (rather than collaboration), a lack of research culture and prioritisation, compounded by a challenging adverse economic environment. However, organisations were motivated to undertake collaborative R&I. They recognised the potential benefits (e.g., skill-sharing, staff development, attracting large studies and funding), the need for collaborative research that mirrors integrated care, and subsequent benefits for care recipients. Related barriers included negative experiences of collaboration, fear of failing and low confidence. Capability varied across organisations in terms of research skills and confidence, which reflected the range of partners (from local authorities to NHS Trusts, primary care, and academic institutions). These findings indicate a need to shift from a culture of competition to collaboration, and to help organisations across ICS to prioritise research, and share resources and skills to mitigate the limiting effects of a constrained economic environment. This could be further explored using a systems change approach, to develop the collaborative research efforts alongside the overarching move towards integrated care.
Objectives The aim of this study was to describe and compare health economic outcomes [health-care utilization and costs, work outcomes, and health-related quality of life (EQ-5D-5L)] in patients classified into different levels-of-risk subgroups by the Keele STarT MSK Tool. Methods Data on health-care utilization, costs and EQ-5D-5L were collected from a health-care perspective within a primary care prospective observational cohort study. Patients presenting with one (or more) of the five most common musculoskeletal pain presentations were included: back, neck, shoulder, knee or multi-site pain. Participants at low, medium and high risk of persistent disabling pain were compared in relation to mean health-care utilization and costs, health-related quality of life, and employment status. Regression analysis was used to estimate costs. Results Over 6 months, the mean (s.d.) total health-care (National Health Service and private) costs associated with the low, medium, and high-risk subgroups were 132.92 pound (167.88), 279.32 pound (462.98) and 476.07 pound (716.44), respectively. Mean health-related quality of life over the 6-month period was lower and more people changed their employment status in the high-risk subgroup compared with the medium- and low-risk subgroups. Conclusions This study demonstrates that subgroups of people with different levels of risk for poor musculoskeletal pain outcomes also have different levels of health-care utilization, health-care costs, health-related quality of life, and work outcomes. The findings show that the STarT MSK Tool not only identifies those at risk of a poorer outcome, but also those who will have more health-care visits and incur higher costs.
Health literacy (HL), defined as the ability of an individual to understand and appraise health information to make informed decisions on their health, helps maintain and improve one's health and thus reduce the use of healthcare services. There is a recognised global effort to address insufficient HL in early life and understand how HL develops. This study examined the association of a range of factors including educational, speech and language ability, health and healthcare engagement, sleep problems, mental health, demographic, environmental, and maternal factors at different childhood stages (from 5 years to 11 years) with later adult HL at age 25. HL was measured using a HL ordinal score (insufficient, limited, or sufficient) derived from the European Literacy Survey Questionnaire-short version (HLS-EU-Q16) within a large UK based birth cohort (Avon Longitudinal Study of Parents and Children: ALSPAC study). Univariate proportional odds logistic regression models for the probability of having higher levels of HL were developed. Results of analysis of 4248 participants showed that poorer speech and language ability (aged 9 years, OR 0.18 95% CI 0.04 to 0.78), internalising in child (age 11 years, OR 0.62 95% CI 0.5 to 0.78), child depression (age 9 years, OR 0.67 95% CI 0.52 to 0.86), and the presence of maternal depression (child age 5, OR 0.80 95% CI 0.66 to 0.96), reduced the odds of sufficient HL when adult. Our results suggest some useful markers to identify children at potential risk of low HL that could be targeted for research into future interventions within school settings, for example, child's speech and language capability. In addition, this study identified child and maternal mental health as factors associated with later development of limited HL and future research should consider what potential mechanisms might explain this link.
Background Usual primary care for patients with musculoskeletal pain varies widely and treatment outcomes are suboptimal. Stratified care involves targeting treatments according to patient subgroups, in the hope of maximising treatment benefit and reducing potential harm or unnecessary interventions. This programme developed a new prognostic stratified primary care approach, where treatments are matched to a patient’s risk of future persistent pain and disability based on a prognostic tool, and compared this with usual care. Objectives In four linked work packages, we refined and validated a prognostic tool [the Keele STarT MSK (Subgrouping for Targeted Treatment for Musculoskeletal pain) Tool] to identify risk of poor outcome and defined cut-off scores to distinguish patient risk subgroups (work package 1); defined and agreed new matched treatment options for each risk subgroup and developed a support package for delivery of stratified care (work package 2); tested the feasibility of delivering the stratified approach through a pilot randomised controlled trial and externally validated the prognostic tool (work package 3); and tested the effectiveness of the approach by comparing the clinical effectiveness and cost-effectiveness of stratified primary care with that of usual care through a cluster randomised controlled trial with embedded health economic and qualitative studies (work package 4). Setting General practices and linked musculoskeletal services in the West Midlands of England, UK. Participants Adults registered with participating practices consulting with back, neck, shoulder, knee or multisite musculoskeletal pain, and clinicians involved in managing these patients. Design The programme included the following work packages: work package 1 – a prospective cohort study in 12 practices; work package 2 – an evidence synthesis, consensus group workshops and qualitative studies; work package 3 – a cluster feasibility and pilot trial in eight practices; and work package 4 – a main cluster randomised controlled trial in 24 practices, with health economic analyses and process evaluation. Interventions Stratified care comprised training general practitioners to use the tool and match patients to treatment options depending on their risk subgroup. Usual care comprised usual non-stratified primary care without formal stratification tools. Main outcome measures Cohort primary end points included function (Short Form questionnaire-36 items physical component score) and pain intensity (numerical rating scale). The trial primary end point for patient outcomes was pain intensity (monthly for 6 months) (0–10 numerical rating scale). An audit of primary care electronic medical records evaluated the impact of stratified care on clinical decision-making regarding patient management. Results Work package 1 – the cohort study (n = 1890 patients) refined and validated a new 10-item tool with which to stratify patients with the five most common musculoskeletal pain presentations. The tool subgroups patients into three strata with different characteristics and prognoses. Work package 2: 17 treatment options were recommended – four for patients at low risk, 10 for patients at medium risk and 15 for patients at high risk. Work package 3: the feasibility and pilot trial included 524 patients, and the learning led to amendments to several tool items and a reduced set of treatments (14 in total). Work package 4: in the main trial, 1211 patients consented to data collection (534 in stratified care, 677 in usual care). Stratified primary care did not lead to statistically significant differences in the primary patient outcome of pain intensity [stratified care mean 4.4 (standard deviation 2.3) vs. usual care mean 4.6 (standard deviation 2.4); adjusted mean difference –0.16, 95% confidence interval –0.65 to 0.34; p = 0.535]. Where differences were observed, these were largely isolated to patients at high risk of poor outcome (the smallest subgroup), in favour of stratified care. Positive differences were, however, observed in general practitioner clinical decision-making, with increased provision of written self-management information and referrals to physiotherapy, plus reductions in prescription medication. The economic evaluation demonstrated that costs of care were similar across trial arms (£6.85, 95% confidence interval –£107.82 to £121.54 more for stratified care), with incremental quality-adjusted life-years of 0.0041 (95% confidence interval –0.0013 to 0.0094), representing a net quality-adjusted life-year gain. Stratified care was associated with an incremental cost-effectiveness ratio of £1670 per additional quality-adjusted life-year gained. At a willingness-to-pay threshold (λ) of £20,000 per quality-adjusted life-year, the incremental net monetary benefit was £132 and the probability of stratified care being cost-effective was approximately 73%. The very small differences suggest caution in the interpretation of this result. The qualitative findings revealed that general practitioners felt stratified care had a positive role in informing clinical decision-making, helped them to give greater attention to psychosocial issues and take a more functional approach, and facilitated negotiations with patients about treatment options such as imaging. Limitations The randomised controlled trial was not powered to detect differences between stratified and usual care for patients in each risk subgroup (low, medium and high) nor with each different musculoskeletal pain presentation. The stratified care electronic medical record template ‘fired’ only once per patient. Conclusions The Keele STarT MSK Tool is a valid instrument with which to discriminate between, and predict outcomes of, primary care patients with musculoskeletal pain. Although the randomised trial showed no significant benefit in patient-reported outcomes compared with usual care, some aspects of clinical decision-making improved and the approach was cost-effective. Future work The Keele STarT MSK Tool has been shared with over 1000 tool license requestees, leading to other work. Trial data sets have also led to other work, developing personalised prognostic models for back and neck pain patients (the European Union-funded Back-UP project). The challenge remains how to improve outcomes for primary care patients with musculoskeletal pain. Trial registration This trial is registered as ISRCTN15366334. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 11, No. 4. See the NIHR Journals Library website for further project information.
Objectives This is a protocol for a Cochrane Review (prognosis). The objectives are as follows: We aim to describe the overall prognosis (focusing on the pain course) and the negative impact(s) of acute and chronic musculoskeletal, widespread, and neuropathic pain in children (aged six to 12 years) and adolescents (aged 13 to 18 years) by evaluating: incidence of pain recovery at three and 12 months after reporting acute or chronic pain; change in pain severity at three and 12 months after reporting acute or chronic pain; and negative impact(s) of pain at three and 12 months after reporting chronic pain.
Objectives To assess the feasibility of linking and comparing markers of dementia-related health recorded in primary care electronic health records (EHR) to assessments of cognitive function undertaken in a specialist dementia service. Methods One thousand patients in a UK secondary care specialist dementia service were invited to take part. Primary care EHR were requested from 72 general practices of consenting patients. Sixty-three previously established individual markers within 13 broader domains of dementia-related health were then extracted from primary care EHR and compared to cognitive assessments scores recorded in the dementia service EHR. Results 258 (26%) patients consented to take part. At least one cognitive assessment score was recorded for 242 (94%) patients, but primary and secondary care EHR records could only be linked in 93 patients. 56 of these 93 patients had two cognitive assessments scores at least 12 months apart. In the patients with data available for analysis individuals with a higher number of markers and domains recorded in their primary care records had lower mean cognitive assessment scores (range 1.6-2.1 points), and after adjustment for earlier cognitive scores (range 2.0-2.5 points), indicating poorer cognitive function, although differences were not statistically significant. Conclusion This feasibility study highlights the challenges in obtaining consent and linking primary and secondary care EHR in dementia, and in extracting cognitive function scores from dementia service EHR.
A significant proportion of children/adolescents report chronic widespread pain (CWP), but little is known about clinically relevant CWP or what factors lead to onset in this population. Objectives were to report the primary care consultation prevalence of CWP and investigate risk factors associated with onset. A validated algorithm for identifying CWP status from primary care electronic healthcare records was applied to a child or adolescent population (aged 8-18 years). The algorithm records patients who have recurrent pain consultations (axial skeleton and upper or lower limbs) or those with a nonspecific generalised pain disorder (eg, fibromyalgia). Prevalence was described, and a nested case-control study was established to identify risk factors associated with CWP onset using logistic regression producing odds ratios (ORs) and 95% confidence intervals (95% CIs). Two hundred seventy-one children or adolescents were identified with CWP, resulting in a 5-year consultation prevalence of 3.19%. Risk factors significantly associated with CWP onset were as follows: mental health (eg, anxiety/neurosis consultations), neurological (eg, headaches), genitourinary (eg, cystitis), gastrointestinal (eg, abdominal pain), and throat problems (eg, sore throats). Children or adolescents with 1 or 2 risk factors (OR 2.15, 95% CI 1.6-2.9) or 3 or more risk factors (OR 9.17, 95% CI 5.9-14.3) were at significantly increased odds of CWP onset compared with those with none. Findings show a significant proportion of the child or adolescent primary care population has CWP. Most risk factors involved pain-related conditions, suggesting potential pathways of pain development. Further work is now needed to better understand the development of CWP in children and adolescents.
Objective Rheumatoid arthritis (RA) is an autoimmune, inflammatory, systemic condition that requires specific drug treatment to suppress disease activity and prevent joint deformity. To manage the ongoing symptoms of joint pain and fatigue patients are encouraged to engage in self-management activities. People with RA have an increased incidence of serious illness and mortality, with the potential to impact on quality of life. This study explored patients’ experiences of living with RA on physical, psychological and social well-being as well as their ability to employ self-management skills during the coronavirus pandemic. Design Qualitative, longitudinal (baseline, 16 September to 23 November 2020 and after 2–4 months, 11 January to the 17 January 2021), semistructured telephone interviews. Setting A rheumatology service based in a community hospital. Participants 15 adults with RA. Main outcomes Data were analysed using interpretative phenomenological analysis. Results Five themes were identified that related to impact on (1) fear: the dominant emotion, (2) social connections and work practices, (3) physical health, (4) identity and (5) self-management as a coping mechanism. The overriding emotion was one of fear, which remained high throughout both interviews. The negative impact on social well-being increased as the pandemic progressed. Conversely, physical health was not affected at either time point, although participants reported difficulty in interpreting whether physical symptoms were attributable to their RA or COVID-19. Recognition of increased vulnerability led to a reassessment of self-identity; however, respondents reported using previously learnt self-management techniques to cope in the context of the pandemic. Conclusions The main impact was on emotional and social well-being. Levels of fear and vulnerability which affected self-identity remained high throughout the pandemic and the impact on social well-being increased over time. Physical health remained largely unaffected. Self-management skills were used to maintain a sense of well-being.
Evidence-based practice (EBP) has been promoted within social work/social care, with emerging evidence of benefit to practitioners and service users. Advocates argue that EBP enables practitioners to have the skills to interpret and evaluate evidence and be actively involved in research. This project aimed to evaluate awareness, experience/skills and value of research, and explore barriers to engagement with research. A cross-sectional survey was undertaken across a diverse range of social work/care staff at a large National Health Service (NHS) Foundation Trust and partner Local Authority. The survey included both closed and an open-ended response to facilitate a mixed method analysis. In total, 208 staff responded (55 percent response) and findings show a high rating on the relevance of research to professional development (73 percent); however, a low level of actual involvement (10 percent) and low levels of confidence/knowledge across a range of research skills. Identified barriers include a lack of knowledge on where/how to begin, lack of evidence that it improves practice, the potential to threaten practice and low capacity and time. These findings highlight a potential gap between a current drive for social work/care to be more evidenced based and the ability of social work/care to enact this approach.
Abstract Background/Aims The COVID-19 pandemic placed patients with rheumatoid arthritis (RA) at increased risk of poor outcomes as a result of their condition, compounded by use of immunosuppressant medication, and higher prevalence of comorbidities. As a consequence, some patients were instructed within the UK to follow strict guidelines to “shield”, severely restricting routine social interactions. This study explored patients’ longitudinal experiences of living with RA during the COVID-19 pandemic. Methods Patients with rheumatoid arthritis, from a community hospital-based rheumatology service, participated in two semi-structured telephone interviews at baseline in autumn 2020 and 2-4 months later. Interviews were recorded and transcribed verbatim. Interpretative phenomenological analysis was undertaken by two members of the research team with input from two patient partners (KR and MB). Results 15 participants (9 females, 10 retired, age range 45-79 years) were interviewed twice. Five themes were identified: i) fear, ii) social wellbeing, iii) physical health, iv) pre-existing self-management of RA as a coping mechanism, and v) vulnerability. The overriding emotion was one of fear of contracting COVID-19, which remained high throughout both interviews. Fear was influenced by patients’ existing knowledge of their RA and medications and the presence of other significant co-morbidities. Further influences on fear included mainstream media reports (increasing reporting of deaths and new variants) and personal knowledge (family and friends who had contracted COVID-19). The impact on social wellbeing became more pronounced as remote communications could not replicate the benefits of physical interaction. Participants reported no impact on their physical health, with increased rest resulting from restricted social interaction perceived to be beneficial. Many participants utilised the resilience they had learned as a result of having RA to cope, including stress management, pacing, and exercise. Being categorised as “clinically extremely vulnerable” led to a reassessment of self-identity, with participants not wanting to be perceived as being weak or helpless. Finally, many participants used lockdown to reflect on and reassess their personal priorities. Conclusion This longitudinal interview study with 15 people with RA highlights that the main impact of the pandemic appeared to be on emotional wellbeing brought about by fear of COVID-19, later compounded by lack of social interaction. In this small study, participants’ physical health was reported to be stable and participants were able to use self-management skills to cope. The realisation of the seriousness of contracting COVID-19 led to feelings of vulnerability and a reassessment of self-identity. The study raises important issues for those providing healthcare to people with RA, including effective communication with awareness of its likely impact, using pre-existing self-management strategies to enhance wellbeing, and recognition of the potential for social isolation and the implications thereof. Disclosure P. Campbell: None. Z. Paskins: None. S. Hider: None. A. Hassell: None. F. Crawford-Manning: None. K. Rule: None. M. Brooks: None. S. Ryan: None.
Abstract Objective People with inflammatory arthritis have an increased incidence of serious illness and mortality, placing them at risk of poor outcomes from coronavirus disease 2019 (COVID-19). This study explored patients’ perceptions of risk from COVID-19 over a longitudinal period of the pandemic. Methods Fifteen adults with inflammatory arthritis attending a National Health Service rheumatology service each took part in three semi-structured telephone interviews conducted between 16 September 2020 and 29 July 2021. Interpretive phenomenological analysis was undertaken by two researchers and two public contributors. Results Four main themes relating to perceptions of risk from COVID-19 were identified: inflammatory arthritis; medications and co-morbidities; immediate social environment; health policy communication; and media influence. Participants recognized that having inflammatory arthritis increased their individual risk. Perceptions of risk and associated fear increased during the pandemic, influenced by family/friends who had had COVID-19 and health policy communications. The perceived constant use of negative messages led to many participants disengaging with the media. At the final interviews, when the vaccination programme was well established, participants continued to assess the risk and benefits of engaging in activities. Conclusion This study demonstrates the breadth of factors that influenced perceptions of risk in people with an inflammatory arthritis. As health professionals, we have only a small sphere of influence over some of these factors, namely health-care communications. People with inflammatory arthritis appropriately knew that their condition increased their infection risk, but more could be done to consider how and to what extent we involve patients in explaining risk at times of crisis.
Summary The COVID-19 pandemic signalled a radical shift in health and social care services globally. In UK, many of the people with existing social care needs were identified as ‘clinically vulnerable’ to COVID-19. Those at greatest risk were encouraged to adhere to additional public health measures that inadvertently exacerbated social disadvantages. Social workers were challenged to ‘dig deep’ to continue to provide services as usual. However, problems implementing new ways of working were reported but not examined in-depth through research. Our study explored experiences and perceptions of social workers responding to the first wave (April–July 2020) of COVID-19, in England, UK. Interviews with thirteen social workers, all working in the West Midlands region, were conducted via telephone or online video. Transcripts were analysed using reflexive thematic analysis. We use ‘managing uncertainty’ as a central concept underpinning the four themes identified after analysis: (1) providing social care at a physical distance, (2) negotiating home/work boundaries, (3) managing emerging risks and (4) long-term implications for social work. We discuss our findings in the context of resilience and organisational adaptation. Social workers in our study demonstrated resilience in action and rapid adaptation to new practices, but equally expressed concern about short-term efficiencies being prioritised over individual service user needs.
People of South Asian (SA) origin have a higher prevalence of dementia compared with the United Kingdom (UK) population as a whole. Little is known about how family carers of SA origin perceive dementia, manage access to dementia services, and how plans and preparations are made for end-of-life for loved ones with dementia. This qualitative study aimed to explore the experiences of carers of people with dementia of SA origin, living in the UK. Through semi-structured interviews, the perspective of caregivers of a person with dementia was explored from point of diagnosis to end-of-life preparation. Sixteen caregivers participated in face-to-face interviews. Four key themes are presented (i) lacking awareness at the start; (ii) living with the challenges of dementia; (iii) preparing for end-of-life; (iv) preferences for burial. Carers described difficulties in making sense of early symptoms and the behaviour changes they observed amongst their relatives with dementia. They described the tensions in trying to follow their religious and cultural identities of honouring the dignity and choices of the person with dementia. This study reports on the perspectives of SA carers of people with dementia, particularly exploring the end-of-life preparation and wishes of people with dementia in the UK. Family carers may benefit from accessing more culturally sensitive support when dementia is diagnosed, including such support when receiving formal day-to-day care. Importantly the findings suggest that planning and preparing to provide end-of-life for people with dementia should recognise and respect family and cultural contexts and religious beliefs.
Background Guidance for choosing face-to-face vs remote consultations (RCs) encourages clinicians to consider patient preferences, however, little is known about acceptability of, and preferences for RCs, particularly amongst patients with musculoskeletal conditions. This study aimed to explore the acceptability of, and preferences for, RC among patients with osteoporosis and rheumatoid arthritis. Methods Three UK qualitative studies, exploring patient experiences of accessing and receiving healthcare, undertaken during the pandemic, with people with osteoporosis and rheumatoid arthritis. Study team members agreed a consistent approach to conduct rapid deductive analysis using the Theoretical Framework of Acceptability (TFA) on transcripts from each data set relating to RC, facilitated by group meetings to discuss interpretations. Findings from the three studies were pooled. Results Findings from 1 focus group and 64 interviews with 35 people were included in the analysis. Participants' attitudes to RC, views on fairness (ethicality) and sense-making (intervention coherence) varied according to their needs within the consultation and views of the pandemic. Some participants valued the reduced burden associated with RC, while others highly valued non-verbal communication and physical examination associated with face-to-face consults (opportunity costs). Some participants described low confidence (self-efficacy) in being able to communicate in RCs and others perceived RCs as ineffective, in part due to suboptimal communication. Conclusions Acceptability of, and preferences for RC appear to be influenced by societal, healthcare provider and personal factors and in this study, were not condition-dependant. Remote care by default has the potential to exacerbate health inequalities and needs nuanced implementation.