The circular paradox of including people with severe brain injuries and reduced decisional capacity in research: A feasibility study exploring randomized research, consent-based recruitment biases, and the resultant health inequities.

BACKGROUND: People with severe brain injuries (PSBI) and reduced capacity to consent (CTC) frequently develop muscle contractures. Standard care includes prolonged stretch (PS) but there is limited condition-specific evidence from randomized controlled trials (RCTs). PURPOSE: Identify factors affecting the inclusion of PSBI and reduced CTC in a PS RCT and methodologies more capable of generating condition-specific outcomes. METHODS: Mixed-method feasibility studies, including a pilot RCT (PSBI, adults with reduced CTC) comparing PS treatments (serial casting and splinting) and focus groups/interviews with physiotherapists involved in PS treatment. Reflexive thematic analysis developed themes. RESULTS: Two PSBI were included in the pilot RCT with no significant safety concerns or adverse effects. Twelve physiotherapists participated in two focus groups and two interviews. Four themes were identified: 1) complexity of contracture management; 2) burden of decision making; 3) lack of evidence and uncertainty; and 4) challenges to RCT acceptability and feasibility. CONCLUSIONS: Reduced CTC contributes to the exclusion of PSBI from experimental research, and a circular paradox where poor research inclusion contributes to generalized healthcare and "evidence-biased medicine." Due to the complexity of their condition, simply including PSBI in randomized research is unlikely to create meaningful health outcomes. Improving their care requires a paradigm shift toward pluralistic methods of knowledge generation.

Family carers' experiences of dysphagia after a stroke: An exploratory study of spouses living in a large metropolitan city.

BACKGROUND: People with post-stroke dysphagia often require informal care from family to facilitate safe swallowing, modify food/drink or administer tube-feeds. Previous survey studies have found dysphagia may increase family caregiver burden. However, the experiences of family members in this population have not been fully explored. AIMS: To explore family members' experiences of living with a spouse with post-stroke dysphagia. METHODS & PROCEDURES: This exploratory qualitative study used one-to-one semi-structured interviews to explore family members' experiences. They were asked open questions about previous eating routines, dysphagia onset, their role and future hopes. Interviews were audio-recorded, transcribed and analysed thematically with an inductive approach to determine key features of family members' experiences. OUTCOMES & RESULTS: Five spouses aged 70-93 years participated. Their relatives' strokes happened 3 months to 3 years before the interview. Five themes were identified: 'I do all of it'; making sense of dysphagia; emotional responses; reflecting on relationships; and redefining lifestyle. CONCLUSIONS & IMPLICATIONS: It is important to consider family members' perspectives as they often provide vital care to loved-ones with dysphagia. In relation to eating and drinking, maintaining elements of previous routines seems important to families. Healthcare professionals should consider these when making recommendations for rehabilitation. Family members have differing perspectives of the comparative impact of dysphagia; patient and family priorities should be explored for healthcare professionals to provide better-targeted support. WHAT THIS PAPER ADDS: What is already known on the subject Informal caregivers, often spouses, play a vital role in supporting the health and well-being of older people with health conditions. The presence of post-stroke dysphagia may present increased challenges for the informal caregiver. There are limited studies qualitatively exploring the experiences of informal caregivers in this population. What this paper adds to existing knowledge Current health and social care provision for this population leaves informal caregivers feeling they have been left to manage dysphagia alone. Informal caregivers demonstrate a breadth of knowledge about their spouse's dysphagia, problem-solving effective solutions. Informal caregivers have a range of interpretations of the nature and cause of dysphagia; leading to miscommunication with health professionals and complex emotional responses. What are the potential or actual clinical implications of this work? Healthcare professionals might consider ways in which to support dysphagic patients' families later in their care pathway, through scheduling reviews or running dysphagia patient and family groups. Health and social care professionals and policymakers should learn from informal caregivers' expertise to promote better health and quality-of-life outcomes for the patient and caregiver. Equal, open conversations between health and social care professionals and patients/families on their understanding of dysphagia may help informal caregivers to better voice their concerns and support mutual understanding. This has implications for adherence to recommendations, psychological well-being and patient safety.

Perceived impact on efficiency and safety of experienced American physician assistants/associates in acute hospital care in England: findings from a multi-site case organisational study.

OBJECTIVES: To investigate the contribution, efficiency and safety of experienced physician associates included in the staffing of medical/surgical teams in acute hospitals in England, including facilitating and hindering factors. DESIGN: Mixed methods longitudinal, multi-site evaluation of a two-year programme employing 27 American physician associates: interviews and documentary analysis. SETTING: Eight acute hospitals, England. PARTICIPANTS: 36 medical directors, consultants, junior doctors, nurses and manager, 198 documents. RESULTS: Over time, the experienced physician associates became viewed as a positive asset to medical and surgical teams, even in services where high levels of scepticism were initially expressed. Their positive contribution was described as bringing continuity to the medical/surgical team which benefited patients, consultants, doctors-in-training, nurses and the overall efficiency of the service. This is the first report of the positive impact that, including physician associates in medical/surgical teams, had on achieving safe working hours for doctors in training. Many reported the lack of physician associates regulation with attendant legislated authority to prescribe medicines and order ionising radiation was a hindrance in their deployment and employment. However, by the end of the programme, seven hospitals had published plans to increase the numbers of physician associates employed and host clinical placements for student physician associates. CONCLUSIONS: The programme demonstrated the types of contributions the experienced physician associates made to patient experience, junior doctor experience and acute care services with medical workforce shortages. The General Medical Council will regulate the profession in the future. Robust quantitative research is now required.

Integration and retention of American physician assistants/associates working in English hospitals: A qualitative study.

BACKGROUND: Health workforce planners in many high-income countries are considering policy strategies to retain home and overseas-trained health professionals. There is a lack of evidence on how hospitals can successfully integrate and retain skilled overseas professionals in relevant work roles. This study aimed to explore the integration and retention experiences of skilled American physician assistants/associates working in English hospitals. METHODS: A qualitative study using semi-structured telephone interviews was undertaken in spring 2017 and spring 2018. Data were coded and analysed using thematic analysis. The study was framed within a theoretical model of role development. RESULTS: Nineteen physician assistants/associates participated in interviews at timepoint one, and seventeen at timepoint two, across seven English hospitals. Four themes were identified in the integration and retention processes experienced by participants: motivations and expectations, seeking role identity, acceptance and integration, and establishing a niche role. Supervising doctors appeared instrumental in creating opportunities through training and system adjustment that enabled development of niche roles; offering an effective match between participant skills and interests, and medical/surgical team or organisational needs. Whether or not they had a niche role influenced the decision of participants to remain or leave. CONCLUSION: Integration approaches that maximise the value of the skilled health professional to the medical/surgical team and support retention, including development of optimum roles, require time and resources.

Tackling the workforce crisis in district nursing: can the Dutch Buurtzorg model offer a solution and a better patient experience? A mixed methods case study.

Despite policy intentions for more healthcare out of hospital, district nursing services face multiple funding and staffing challenges, which compromise the care delivered and policy objectives. OBJECTIVES: What is the impact of the adapted Buurtzorg model on feasibility, acceptability and effective outcomes in an English district nursing service? DESIGN: Mixed methods case study. SETTING: Primary care. PARTICIPANTS: Neighbourhood nursing team (Buurtzorg model), patients and carers, general practitioners (GPs), other health professionals, managers and conventional district nurses. RESULTS: The adapted Buurtzorg model of community nursing demonstrated feasibility and acceptability to patients, carers, GPs and other health professionals. For many patients, it was preferable to previous experiences of district nursing in terms of continuity in care, improved support of multiple long-term conditions (encompassing physical, mental and social factors) and proactive care. For the neighbourhood nurses, the ability to make operational and clinical decisions at team level meant adopting practices that made the service more responsive, accessible and efficient and offered a more attractive working environment. Challenges were reported by nurses and managers in relation to the recognition and support of the concept of self-managing teams within a large bureaucratic healthcare organisation. While there were some reports of clinical effectiveness and efficiency, this was not possible to quantify, cost or compare with the standard district nursing service. CONCLUSIONS: The adapted Buurtzorg model of neighbourhood nursing holds potential for addressing issues of concern to patients, carers and staff in the community. The two interacting innovations, that is, a renewed focus on patient and carer-centred care and the self-managing team, were implemented in ways that patients, carers, other health professionals and nurses could identify difference for both the nursing care and also the nurses' working lives. It now requires longer term investigation to understand both the mechanism for change and also the sustainability.

Assessing Consensus Between UK Renal Clinicians on Listing for Kidney Transplantation: A Modified Delphi Study.

BACKGROUND: It is well recognized that there is significant variation between centers in access to kidney transplantation. In the absence of high-grade evidence, it is unclear whether variation is due to patient case mix, other center factors, or individual clinician decisions. This study sought consensus between UK clinicians on factors that should influence access to kidney transplantation. METHODS: As part of the Access to Transplantation and Transplant Outcome Measures project, consultant nephrologists and transplant surgeons in 71 centers were invited to participate in a Delphi study involving 2 rounds. During rounds 1 and 2, participants rated their agreement to 29 statements covering 8 topics regarding kidney transplantation. A stakeholder meeting was used to discuss statements of interest after the 2 rounds. RESULTS: In total, 122 nephrologists and 16 transplant surgeons from 45 units participated in rounds 1 and 2. After 2 rounds, 12 of 29 statements reached consensus. Fifty people participated in the stakeholder meeting. After the stakeholder meeting, a further 4 statements reached agreement. Of the 8 topics covered, consensus was reached in 6: use of a transplant protocol, patient age, body mass index, patient compliance with treatment, cardiac workup, and use of multidisciplinary meetings. Consensus was not reached on screening for malignancy and use of peripheral Doppler studies. CONCLUSIONS: The Delphi process identified factors upon which clinicians agreed and areas where consensus could not be achieved. The findings should inform national guidelines to support decision making in the absence of high quality evidence and to guide areas that warrant future research.

Variation in Practice Patterns for Listing Patients for Renal Transplantation in the United Kingdom: A National Survey.

BACKGROUND: Despite the availability of guidelines for the evaluation of candidates for renal transplantation, variation in access to transplantation exists. This national survey investigates whether center variation exists in the assessment of patients for renal transplantation in the United Kingdom. METHODS: An online survey, informed by qualitative interviews, was distributed to all UK renal centers. This survey examined center approaches to chronic kidney disease service provision, transplant recipient assessment, education provision, and waitlisting decision making processes. Center reevaluation policies for patients already listed and priorities for future development were also examined. RESULTS: All 71 renal centers responded. Of these, 83% reviewed predialysis patients in a low clearance clinic. In 26% of the centers, transplantation was not discussed as a treatment option with all patients. Fourteen centers reported having a dedicated transplant assessment clinic, whereas 28% did not have a formal assessment protocol. Age was an exclusion criterion for listing in 3 centers, all of which had a cutoff at 75 years. Eighty-three percent of the centers excluded patients with a high body mass index. Cardiac investigations were risk-stratified in 90% of centers. Surgical involvement varied with 11% of centers listing patients without formal surgical review. There was no formal protocol in place to reevaluate listed patients in 62% of centers. CONCLUSIONS: There is wide variation in UK practice patterns for listing patients for renal transplantation, though its impact on access to transplantation is unclear. The extent to which center-specific and patient-specific factors affect access to transplantation requires further analysis in a prospective cohort of patients.

Patient attitudes towards kidney transplant listing: qualitative findings from the ATTOM study.

BACKGROUND: There is variation in time to listing and rates of listing for transplantation between renal units in the UK. While research has mainly focused on healthcare organization, little is known about patient perspectives of entry onto the transplant waiting list. This qualitative study aimed to explore patients' views and experiences of kidney transplant listing. METHODS: Semi-structured interviews were conducted with patients aged under 75, who were on dialysis and on the transplant waiting list, not on the waiting list, undergoing assessment for listing or who had received a transplant. Patients were recruited from a purposive sample of nine UK renal units, which included transplanting and non-transplanting units and units with high and low wait-listing patterns. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Fifty-three patients (5-7 per renal unit) were interviewed. Patients reported that they had received little information about the listing process. Some patients did not know if they were listed or had found they were not listed when they had thought they were on the list. Others expressed distress when they felt they had been excluded from potential listing based on age and/or comorbidity and felt the process was unfair. Many patients were not aware of pre-emptive transplantation and believed they had to be on dialysis before being able to be listed. There was some indication that pre-emptive transplantation was discussed more often in transplant than non-transplant units. Lastly, some patients were reluctant to consider family members as potential donors as they reported they would feel 'guilty' if the donor suffered subsequent negative effects. CONCLUSIONS: Findings suggest a need to review current practice to further understand individual and organizational reasons for the renal unit variation identified in patient understanding of transplant listing. The communication of information warrants attention to ensure patients are fully informed about the listing process and opportunity for pre-emptive transplantation in a way that is meaningful and understandable to them.

Using computer decision support systems in NHS emergency and urgent care: ethnographic study using normalisation process theory.

BACKGROUND: Information and communication technologies (ICTs) are often proposed as 'technological fixes' for problems facing healthcare. They promise to deliver services more quickly and cheaply. Yet research on the implementation of ICTs reveals a litany of delays, compromises and failures. Case studies have established that these technologies are difficult to embed in everyday healthcare. METHODS: We undertook an ethnographic comparative analysis of a single computer decision support system in three different settings to understand the implementation and everyday use of this technology which is designed to deal with calls to emergency and urgent care services. We examined the deployment of this technology in an established 999 ambulance call-handling service, a new single point of access for urgent care and an established general practice out-of-hours service. We used Normalization Process Theory as a framework to enable systematic cross-case analysis. RESULTS: Our data comprise nearly 500 hours of observation, interviews with 64 call-handlers, and stakeholders and documents about the technology and settings. The technology has been implemented and is used distinctively in each setting reflecting important differences between work and contexts. Using Normalisation Process Theory we show how the work (collective action) of implementing the system and maintaining its routine use was enabled by a range of actors who established coherence for the technology, secured buy-in (cognitive participation) and engaged in on-going appraisal and adjustment (reflexive monitoring). CONCLUSIONS: Huge effort was expended and continues to be required to implement and keep this technology in use. This innovation must be understood both as a computer technology and as a set of practices related to that technology, kept in place by a network of actors in particular contexts. While technologies can be 'made to work' in different settings, successful implementation has been achieved, and will only be maintained, through the efforts of those involved in the specific settings and if the wider context continues to support the coherence, cognitive participation, and reflective monitoring processes that surround this collective action. Implementation is more than simply putting technologies in place - it requires new resources and considerable effort, perhaps on an on-going basis.