Understanding engagement in diet and dementia prevention research among British South Asians: a short report of findings from a patient and public involvement group.

BACKGROUND: Dementia is a global public health challenge. Evidence suggests that individuals from South Asian communities are an at-risk group for dementia, partly as a result of early and cumulative exposure to known dementia risk factors, such as obesity and type 2 diabetes. There needs to be more culturally appropriate community engagement to increase awareness of dementia and identify better strategies to encourage participation in dementia-related research. METHODS: We aimed to better understand the barriers and facilitators towards engaging with, and participating in, diet and dementia related research among British South Asians. This was achieved using a public and patient involvement (PPI) approach. A community-based, engagement event involving information sharing from experts and roundtable discussions with South Asian communities (n = 26 contributors) was held in June 2023 in Newcastle-upon-Tyne, UK. Collaboration from preidentified PPI representatives (n = 3) informed the content and structure of PPI activities, as well as recruitment. Data were synthesised using template analysis, a form of codebook thematic analysis. This involved deductively analysing data using relevant a priori themes, which were expanded upon, or modified, via inductive analysis. RESULTS: The findings highlighted the importance of trust, representation and appreciation of cultural barriers as facilitators to engagement in diet and dementia risk reduction research. Consideration of language barriers, time constraints, social influences and how to embed community outreach activities were reported as driving factors to maximise participation. CONCLUSIONS: This PPI work will inform the design and co-creation of a culturally adapted dietary intervention for brain health in accordance with the Medical Research Council and National Institute for Health and Care Research guidance for developing complex interventions.

Adapting to compromised routines: Parental perspectives on physical activity and health for children and adolescents with type 1 diabetes in the UK during COVID-19 lockdown.

PURPOSE: To determine how COVID-19 lockdown impacted physical activity (PA) levels, wellbeing, and diabetes management in children (aged 0-17 years) with type 1 diabetes (T1D), from the perspectives of their parent/guardian. DESIGN AND METHODS: This qualitative descriptive study is part of a larger, parallel mixed-methods design study, which incorporated a cross-sectional survey and semi-structured one-to-one interviews. Interviewees were recruited from the survey, which was distributed to parents of children/adolescents with T1D in the UK. Interviews explored diabetes management, mental and physical wellbeing, changes in PA levels, sleep quality before/during lockdown, and the effects of lockdown on the individual and their family. The interviews were transcribed and the data were analysed thematically. RESULTS: 14 interviews were conducted with parents. Thematic analysis generated a central theme of routine disruption, with four further themes on diabetes management routines, harnessing the opportunities of lockdown, weighing up risk, and variable impact on wellbeing. CONCLUSIONS: Maintaining or increasing PA during COVID-19 lockdown was associated with better diabetes management, sleep, and wellbeing for children/adolescents with T1D, despite significant disruption to established routines. Use of technology during the pandemic contributed positively to wellbeing. PRACTICE IMPLICATIONS: It is crucial to emphasize the significance of maintaining a well-structured routine when treating patients with type 1 diabetes. A consistent routine, incorporating regular physical exercise and good sleep hygiene, will help with managing overall diabetes control.

'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.

Validation of Igls Criteria for Islet Transplant Functional Status Using Person-Reported Outcome Measures in a Cross-Sectional Study.

Associations between islet graft function and well-being in islet transplant recipients requiring exogenous insulin remain unclear. This cross-sectional analysis compared person-reported outcome measures in 15 adults with type 1 diabetes whose islet transplants were classified according to Igls criteria as "Good" (n = 5), "Marginal" (n = 4) and "Failed" (n = 6) graft function. At a mean of 6.2 years post-first islet transplant, 90% reduction in severe hypoglycaemia was maintained in all groups, with HbA1c (mean ± SD mmol/mol) 49 ± 4 in recipients with "Good" function; 56 ± 5 ("Marginal"); and 69 ± 25 ("Failed"). Self-reported impaired awareness of hypoglycaemia persisted in all groups but those with "Good" function were more likely to experience symptoms during hypoglycaemia. "Marginal" function was associated with greater fear of hypoglycaemia (HFS-II score: "Marginal": 113 [95, 119]; "Failed": 63 [42, 93] (p = 0.082); "Good": 33 [29, 61]) and severe anxiety (GAD7: "Marginal"): 21 [17, 21]; "Failed": 6 [6, 6] "Good": 6 [3, 11]; (p = 0.079)), diabetes distress and low mood. Despite clear evidence of ongoing clinical benefit, Igls criteria 'Marginal' function is associated with sub-optimal well-being, including greater fear of hypoglycaemia and severe anxiety. This study provides person-reported validation that "Good" and "Marginal" graft function are differentiated by general and diabetes-specific subjective well-being, suggesting those with "Marginal" function may benefit from further intervention, including re-transplantation.

A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams.

BACKGROUND: Chimeric Antigen-Receptor-T-cell (CAR-T) therapy is a potentially life-saving treatment for refractory haematological malignancies. Internationally, CAR-T services are undergoing rapid development. Despite this, research on the lived experiences of patients receiving novel immunotherapies is limited. Little is known about their supportive care needs. Consequently, dedicated palliative and supportive care services may not be considered. AIM: To explore the patient and caregiver experience of CAR-T therapy and identify unmet needs to inform service development. DESIGN: A qualitative longitudinal service evaluation. Sixteen interviews were conducted between December 2020 and March 2021 with patients (n = 10) and family caregivers (n = 4). Thematic analysis was underpinned by a constructivist approach. SETTING/PARTICIPANTS: All patients and caregivers attending one UK centre for CAR-T therapy were eligible. Semi-structured interviews were conducted at specific time points: prior to infusion, one month after infusion and follow-up post-treatment (5-18 months). RESULTS: Identified themes described the unique challenges of CAR-T therapy. From the point of referral patients had a wide range of supportive care needs. Initially, this was attributed to prior receipt of multiple failed treatments. Subsequently, CAR-T side-effects impacted on quality-of-life and physical function. Significant psychological morbidity from prognostic uncertainty was described throughout. Patients and caregivers reported that a dedicated nurse specialist - an expert, consistent point of contact - was essential. CONCLUSION: Patients and caregivers would benefit from early and ongoing support from palliative care, allied-health professionals and psychology. As indications for CAR-T therapy expand, there is an urgent need for multi-centre studies incorporating patient-reported outcome data to ensure patient-centred service delivery.

Identity construction in the very old: A qualitative narrative study.

People are living longer internationally, with a growing number experiencing very old age (≥95 years). Physical, psychological and social changes can challenge one's sense of self and disrupt existing identities. However, experiences of the very old in society are seldom researched and how they construct identity and negotiate a sense of self is little understood. Our study focuses on participants aged >95 years to understand how identity is conceptualised to negotiate a continued place in society. Qualitative interviews with 23 people were thematically analysed, underpinned by Positioning Theory. Five themes were generated: A contented life; reframing independence; familial positioning; appearance and physical wellbeing; reframing ill health. Participants saw themselves as largely content and, despite their world becoming smaller, found pleasure in small routines. Perceptions of self were reframed to maintain autonomy within narrow parameters. Past relationships and experiences/events were drawn on to make sense of ongoing ways of living. There were tensions around feelings of loss of autonomy and independence, with some valuing these over issues such as safety. This sometimes conflicted with views of others and small acts of resistance and subversion were acted out to maintain some sense of control. However, participants minimised progressive ill health. Findings provide insight into how the very old may utilise identity to negotiate, acquiesce, resist and challenge the world around them.

Ageing well with diabetes: A workshop to co-design research recommendations for improving the diabetes care of older people.

AIMS: To identify key research questions where answers could improve care for older people living with diabetes (PLWD), and provide detailed recommendations for researchers and research funders on how best to address them. METHODS: A series of online research workshops were conducted, bringing together a range of PLWD and an acknowledged group of academic and clinical experts in their diabetes care to identify areas for future research. Throughout the pre-workshop phase, during each workshop, and in manuscript preparation and editing, PLWD played an active and dynamic role in discussions as part of both an iterative and narrative process. RESULTS: The following key questions in this field were identified, and research recommendations for each were developed: How can we improve our understanding of the characteristics of older people living with diabetes (PLWD) and their outcomes, and can this deliver better person-centred care? How are services to care for older PLWD currently delivered, both for their diabetes and other conditions? How can we optimise and streamline the process and ensure everyone gets the best care, tailored to their individual needs? What tools might be used to evaluate the level of understanding of diabetes in the older population amongst non-specialist Healthcare Professionals (HCPs)? How can virtual experts or centres most effectively provide access to specialist multi-disciplinary team (MDT) expertise for older PLWD and the HCPs caring for them? Is a combination of exercise and a nutrition-dense, high protein diet effective in the prevention of the adverse effects of type 2 diabetes and deterioration in frailty, and how might this be delivered in a way which is acceptable to people with type 2 diabetes? How might we best use continuous glucose monitoring (CGM) in older people and, for those who require support, how should the data be shared? How can older PLWD be better empowered to manage their diabetes in their own home, particularly when living with additional long-term conditions? What are the benefits of models of peer support for older PLWD, both when living independently and when in care? CONCLUSIONS: This paper outlines recommendations supported by PLWD through which new research could improve their diabetes care and calls on the research community and funders to address them in future research programmes and strategies.

EXercise to Prevent frailty and Loss Of independence in insulin treated older people with DiabetEs (EXPLODE): protocol for a feasibility randomised controlled trial (RCT).

INTRODUCTION: There are 3.9 million people in the UK with diabetes. Sarcopenia, increased frailty and loss of independence are often unappreciated complications of diabetes. Resistance exercise shows promise in reducing these complications in older adult diabetes patients. The aim of this feasibility randomised controlled trial is to (1) characterise the physical function, cardiovascular health and the health and well-being of older adults with mild frailty with/without diabetes treated with insulin, (2) to understand the feasibility and acceptability of a 4-week resistance exercise training programme in improving these parameters for those with diabetes and (3) to test the feasibility of recruiting and randomising the diabetic participant group to a trial of resistance training. METHODS AND ANALYSIS: Thirty adults aged ≥60 years with insulin-treated diabetes mellitus (type 1 or 2), and 30 without, all with mild frailty (3-4 on the Rockwood Frailty Scale) will be recruited. All will complete blood, cardiovascular and physical function testing. Only the diabetic group will then proceed into the trial itself. They will be randomised 1:1 to a 4-week semisupervised resistance training programme, designed to increase muscle mass and strength, or to usual care, defined as their regular physical activity, for 4 weeks. This group will then repeat testing. Primary outcomes include recruitment rate, attrition rate, intervention fidelity and acceptability, and adherence to the training programme. A subset of participants will be interviewed before and after the training programme to understand experiences of resistance training, impact on health and living with diabetes (where relevant) as they have aged. Analyses will include descriptive statistics and qualitative thematic analysis. ETHICS AND DISSEMINATION: The North East-Newcastle and North Tyneside 2 Research Ethics Committee (20/NE/0178) approved the study. Outputs will include feasibility data to support funding applications for a future definitive trial, conference and patient and public involvement presentations, and peer-reviewed publications. TRIAL REGISTRATION NUMBER: ISRCTN13193281.

Experiences of a National Early Warning Score (NEWS) intervention in care homes during the COVID-19 pandemic: a qualitative interview study.

BACKGROUND: The COVID-19 pandemic has taken a heavy toll on the care home sector, with residents accounting for up to half of all deaths in Europe. The response to acute illness in care homes plays a particularly important role in the care of residents during a pandemic. Digital recording of a National Early Warning Score (NEWS), which involves the measurement of physical observations, started in care homes in one area of England in 2016. Implementation of a NEWS intervention (including equipment, training and support) was accelerated early in the pandemic, despite limited evidence for its use in the care home setting. OBJECTIVES: To understand how a NEWS intervention has been used in care homes in one area of North-East England during the COVID-19 pandemic, and how it has influenced resident care, from the perspective of stakeholders involved in care delivery and commissioning. METHODS: A qualitative interview study with care home (n=10) and National Health Service (n=7) staff. Data were analysed using thematic analysis. RESULTS: Use of the NEWS intervention in care homes in this area accelerated during the COVID-19 pandemic. Stakeholders felt that NEWS, and its associated education and support package, improved the response of care homes and healthcare professionals to deterioration in residents' health during the pandemic. Healthcare professionals valued the ability to remotely monitor resident observations, which facilitated triage and treatment decisions. Care home staff felt empowered by NEWS, providing a common clinical language to communicate concerns with external services, acting as an adjunct to staff intuition of resident deterioration. CONCLUSIONS: The NEWS intervention formed an important part of the care home response to COVID-19 in the study area. Positive staff perceptions now need to be supplemented with data on the impact on resident health and well-being, workload, and service utilisation, during the pandemic and beyond.

Future-proofing the primary care workforce: A qualitative study of home visits by emergency care practitioners in the UK.

BACKGROUND: Broadening the skill-mix in general practice is advocated to build resilience into the primary care workforce. However, there is little understanding of how extended-scope practitioners from different disciplines, such as paramedicine and nursing, embed into roles traditionally ascribed to general practitioners (GPs). OBJECTIVES: This study sought to explore patients' and professionals' experiences of a primary care home visiting service delivered by emergency care practitioners (ECPs), in place of GPs; to determine positive impacts/unintended consequences and establish whether interdisciplinary working was achieved. METHODS: Three practices in England piloted an ECP (extended-scope practitioners with a paramedic or nursing background) home visiting service (November 2018-March 2019). Following the pilot, focus groups were conducted with each of the three primary healthcare teams (14 participants, including eight GPs), and one with ECPs (five participants) and nine individual patient interviews. Data were analysed using a modified framework approach. RESULTS: The impact of ECP home visiting on GP workload and patient care was perceived as positive by patients, GPs and ECPs. Initial preconceptions of GPs and patients about the ECP role and expertise, and reservations about the appropriacy of ECPs for home visiting, were perceived to have been overcome by the expertise and interpersonal skills of ECPs. Fostering a culture of collaboration between ECPs and GPs was instrumental to remodelling professional boundaries at the practice level. CONCLUSION: Broadening the skill-mix to incorporate extended-scope practitioners such as ECPs, to deliver primary care home visiting, presents an opportunity to increase resilience in the general practice workforce.

Patient and public involvement in care home research: Reflections on the how and why of involving patient and public involvement partners in qualitative data analysis and interpretation.

BACKGROUND: There is limited evidence for the impact of involving patients and the public (PPI) in health research. Descriptions of the PPI process are seldom included in publications, particularly data analysis, yet an understanding of processes and impacts of PPI is essential if its contribution to research is to be evaluated. OBJECTIVE: To describe the 'how' of PPI in qualitative data analysis and critically reflect on potential impact. METHODS: We focus on the development and critical reflection of our step-by-step approach to collaborative qualitative data analysis (through a series of analysis workshops) in a specific care home study, and our long-term engagement model with patients and the public (termed PPI partners). RESULTS: An open access PPI group, with multiple events over time, sustained broad interest in care home research. Recordings of interview clips, role-play of interview excerpts and written theme summaries were used in workshops to facilitate PPI partner engagement with data analysis in a specific study. PPI resulted in changes to data interpretation and was perceived to make the research process accessible. We reflect on the challenge of judging the benefits of PPI and presenting PPI in research publications for critical commentary. CONCLUSIONS: Patient and public involvement partners who are actively engaged with data analysis can positively influence research studies. However, guidance for researchers is needed on approaches to PPI, including appropriate levels and methods for evaluation. Without more systematic approaches, we argue that it is impossible to know whether PPI represents good use of resources and is generating a real impact.

Implementation of the National Early Warning Score in UK care homes: a qualitative evaluation.

BACKGROUND: The National Early Warning Score (NEWS) is a tool for identifying and responding to acute illness. When used in care homes, staff measure residents' vital signs and record them on a tablet computer, which calculates a NEWS to share with health services. This article outlines an evaluation of NEWS implementation in care homes across one clinical commissioning group area in northern England. AIM: To identify challenges to implementation of NEWS in care homes. DESIGN AND SETTING: Qualitative analysis of interviews conducted with 15 staff members from six care homes, five health professionals, and one clinical commissioning group employee. METHOD: Interviews were intended to capture people's attitudes and experiences of using the intervention. Following an inductive thematic analysis, data were considered deductively against normalisation process theory constructs to identify the challenges and successes of implementing NEWS in care homes. RESULTS: Care home staff and other stakeholders acknowledged that NEWS could enhance the response to acute illness, improve communication with the NHS, and increase the confidence of care home staff. However, the implementation did not account for the complexity of either the intervention or the care home setting. Challenges to engagement included competing priorities, insufficient training, and shortcomings in communication. CONCLUSION: This evaluation highlights the need to involve care home staff and the primary care services that support them when developing and implementing interventions in care homes. The appropriateness and value of NEWS in non-acute settings requires ongoing monitoring.

Distribution of the National Early Warning Score (NEWS) in care home residents.

BACKGROUND: the National Early Warning Score (NEWS) is a tool based on vital signs that aims to standardise detection of, and response to, clinical deterioration in adults. NEWS has been adopted in hospitals but not adapted for other settings. This study aimed to explore the feasibility of measuring the NEWS in care homes and describe the distribution of NEWS readings amongst care home residents. METHODS: descriptive analysis of all NEWS readings recorded in a 30-month period (2016-19) across 46 care homes in one Clinical Commissioning Group in England. Comparisons were made between measurements taken as a routine reading and those prompted by concern about acute illness. RESULTS: a total of 19,604 NEWS were recorded from 2,424 older adults (≥65 years; mean age 85). Median NEWS was 2. Two thirds (66%) of residents had a low NEWS (≤2), and 28% had a score of 0. Of the total NEWS readings, 6,277 (32%) were known to be routine readings and 2,256 (12%) were measured because of staff concerns. Median NEWS was 1 for routine and 2 for concern recordings. Overall, only 12% of NEWS were high (≥5), but a higher proportion were elevated when there were concerns about acute illness (18%), compared with routine recordings (7%). CONCLUSIONS: use of NEWS in care homes appears to be feasible. The majority of NEWS were not elevated, and the distribution of scores is consistent with other out-of-hospital settings. Further work is required to know if NEWS is triggering the most appropriate response and improving care home resident outcomes.

Care home services at the vanguard: a qualitative study exploring stakeholder views on the development and evaluation of novel, integrated approaches to enhancing healthcare in care homes.

OBJECTIVES: To explore stakeholders' understanding of novel integrated approaches to enhancing care in care homes (a care home 'vanguard') and identify priorities for evaluation. DESIGN: A qualitative study, using semistructured interviews with commissioners and service providers to/within care homes, and third sector organisations with thematic analysis. SETTING: A Clinical Commissioning Group (CCG) area in England. PARTICIPANTS: Thirty interviewees from care homes, the National Health Service (NHS; England) and local authority, third sector (10 care home managers, 5 general practitioners, 4 CCG employees, 4 local authority employees, 1 national (NHS England) vanguard lead, 2 specialist nurses, 2 geriatricians, 1 third sector and 1 health manager). RESULTS: Four higher level themes emerged from the data: understanding of proposed changes, communication, evaluation of outcome measures of success, and trust and complexity. The vision for the new programme was shared by stakeholders, with importance attached to equitable access to high-quality care. Support for the programme was described as being 'the right thing to do', inferring a moral imperative. However, the practical implications of key aspects, such as integrated working, were not clearly understood and the programme was perceived by some as being imposed, top down, from the health service. Barriers and facilitators to change were identified across themes of communication, outcomes, trust and complexity. Importance was attached to the measurement of intangible aspects of success, such as collaboration. Interviewees understood that outcome-based commissioning was one element of the new programme, but discussion of their aspirations and practices revealed values and beliefs more compatible with a system based on trust. CONCLUSIONS: Innovation in service delivery requires organisations to adopt common priorities and share responsibility for success. The vanguard programme is working to ensure health and local authorities have this commitment, but engaging care homes that may feel isolated from the welfare system needs sustained dialogue over the longer term. Evaluation of the programme needs to measure what is important to stakeholders, and not focus too closely on resource consumption.

Should heart failure be regarded as a terminal illness requiring palliative care? A study of heart failure patients', carers' and clinicians' understanding of heart failure prognosis and its management.

OBJECTIVES: Communication and planning for heart failure (HF) care near the end of life is known to be complex. Little is known about how the patient experience of palliative assessment and communication needs change over time, and how this might inform management. Our aim was to explore experiences of giving or receiving a prognosis and advanced palliative care planning (ACP) for those with HF. METHODS: We carried out a longitudinal grounded theory study, employing in-depth interviews with 14 clinicians (primary and secondary care) and observations of clinic and home appointments, followed by a series of interviews with 13 patients with HF and 9 carers. RESULTS: Overall, the majority of participants rejected notions of HF as a terminal illness in favour of a focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Clinicians revealed frustration about the uncertain nature of HF prognosis, leading to difficulties in planning. Others highlighted the need to deliver problem-based, individualised care but felt constrained sometimes by the lack of multidisciplinary ACP. Patients reported an absence of prognostic discussions with clinicians. CONCLUSIONS: This is the first study exploring the experiences of prognostic communication at all stages of HF. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. Findings support the incorporation of a problem-based approach to management, which recognises the importance of everyday functioning for patients and carers as well as the opportunity for ACP.

Assessing the uptake of the Liverpool Care Pathway for dying patients: a systematic review.

Improving the care of the dying is regarded as a national priority and current guidelines stipulate the need to provide holistic palliative care. Despite this, many dying patients and carers report low levels of comfort and satisfaction with care. Reasons include poor coordination of care, variability in communication and crisis-driven interventions. Integrated care pathways aim to support care coordination and open communication with patients and carers. One example is the Liverpool Care Pathway (LCP). Using the LCP entails assessment of eligibility criteria which requires skills, knowledge and clinical judgement about its timing. This can be problematic, and little is known about actual uptake, characteristics of assessed patients and reasons for inclusion/exclusion. A comprehensive systematic review was conducted for papers published between January 1990 and July 2012 providing information on LCP uptake. 17 papers met inclusion criteria. A total of 18 052 patients were placed on the LCP, in a variety of inpatient and primary care settings, and cancer and non-cancer diagnoses. 47.4% of dying patients identified were placed on the LCP. Although the LCP is widely recommended, it is only used for around half of dying patients. Reasons may include lack of knowledge, high staff turnover and concerns about applicability particularly for unpredictable dying trajectories. The proportion of patients who meet the eligibility criteria and the reasons surrounding low uptake remain unclear. Research is urgently required to further quantify the variable use of the LCP, and to investigate whether alternative approaches should be developed for non-cancer groups.