The challenge of managing mild to moderate distress in patients with end stage renal disease: results from a multi-centre, mixed methods research study and the implications for renal service organisation.

BACKGROUND: Lower-level emotional and psychological difficulties ('distress') in patients with end stage renal disease (ESRD), can lead to reduced quality of life and poor clinical outcomes. National guidelines mandate provision of emotional and psychological support for renal patients yet little is known about the support that patients may require, or the challenges that staff experience in identifying and responding to patient distress. METHODS: Mixed methods study in renal units at four NHS Trusts in the West Midlands, UK involving cross-sectional surveys of ESRD patients and renal unit staff and semi-structured interviews with 46 purposively-sampled patients and 31 renal unit staff. Interviews explored patients' experience of distress and personal coping strategies, staff attitudes towards patient distress and perceptions of their role, responsibility and capacity. RESULTS: Patient distress was widespread (346/1040; 33.3%), and emotional problems were frequently reported. Younger patients, females, those from black and minority ethnic (BME) groups and patients recently initiating dialysis reported particular support needs. Staff recognised the value of supporting distressed patients, yet support often depended on individual staff members' skills and personal approach. Staff reported difficulties with onward referral to formal counselling and psychology services and a lack of immediate access to less formalised options. There was also a substantial training/skills gap whereby many staff reported lacking the confidence to recognise and respond to patient distress. Staff fell broadly into three groups: 'Enthusiasts' who considered identifying and responding to patient distress as integral to their role; 'Equivocators' who thought that managing distress was part of their role, but who lacked skills and confidence to do this effectively, and 'Avoiders' who did not see managing distress as part of their role and actively avoided the issue with patients. CONCLUSIONS: Embedding the value of emotional support provision into renal unit culture is the key to 'normalising' discussions about distress. Immediately accessible, informal support options should be available, and all renal staff should be offered training to proactively identify and reactively manage patient distress. Emotional support for staff is important to ensure that a greater emphasis on managing patient distress is not associated with an increased incidence of staff burnout.

How does pre-dialysis education need to change? Findings from a qualitative study with staff and patients.

BACKGROUND: Pre-dialysis education (PDE) is provided to thousands of patients every year, helping them decide which renal replacement therapy (RRT) to choose. However, its effectiveness is largely unknown, with relatively little previous research into patients' views about PDE, and no research into staff views. This study reports findings relevant to PDE from a larger mixed methods study, providing insights into what staff and patients think needs to improve. METHODS: Semi-structured interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients, exploring experiences of and views about PDE, and analysed using thematic framework analysis. RESULTS: Most patients found PDE helpful and staff valued its role in supporting patient decision-making. However, patients wanted to see teaching methods and materials improve and biases eliminated. Staff were less aware than patients of how informal staff-patient conversations can influence patients' treatment decision-making. Many staff felt ill equipped to talk about all treatment options in a balanced and unbiased way. Patient decision-making was found to be complex and patients' abilities to make treatment decisions were adversely affected in the pre-dialysis period by emotional distress. CONCLUSIONS: Suggested improvements to teaching methods and educational materials are in line with previous studies and current clinical guidelines. All staff, irrespective of their role, need to be trained about all treatment options so that informal conversations with patients are not biased. The study argues for a more individualised approach to PDE which is more like counselling than education and would demand a higher level of skill and training for specialist PDE staff. The study concludes that even if these improvements are made to PDE, not all patients will benefit, because some find decision-making in the pre-dialysis period too complex or are unable to engage with education due to illness or emotional distress. It is therefore recommended that pre-dialysis treatment decisions are temporary, and that PDE is replaced with on-going RRT education which provides opportunities for personalised education and on-going review of patients' treatment choices. Emotional support to help overcome the distress of the transition to end-stage renal disease will also be essential to ensure all patients can benefit from RRT education.

A qualitative study of key stakeholders' perspectives on compassion in healthcare and the development of a framework for compassionate interpersonal relations.

AIMS AND OBJECTIVES: To report findings from a qualitative study of key stakeholders' perspectives on 'compassion' in the health care context. To present the 'Framework for Compassionate Interpersonal Relations'. BACKGROUND: Although many research articles, health policies and health care strategies identify compassion as an underpinning value and key component of health care quality, identifying a unified definition of compassion is challenging. For Higher Education Institutions implementing 'values-based' recruitment processes, a clearer understanding of this core concept is vital. DESIGN: Exploratory, qualitative design. METHODS: Academic staff, health care students, clinicians and service users (n = 45), participated in nine focus groups where they were asked to define compassion in the context of health care. Data were transcribed verbatim and analysed using thematic analysis. RESULTS: Four overarching themes were drawn from the data. The first theme centred on the participants' definitions of compassion, while the second identified compassionate behaviours. The third theme related to the barriers and threats to compassionate practice and the fourth, focused on ways to support compassion in practice. Participants believed that the health care staff should be 'consistently compassionate', and were emphatic that compassion should not be substituted with a 'care without engagement' approach. CONCLUSIONS: The findings concur with other research, which identifies the link between compassion and empathy and the importance of establishing meaningful connections with others. While participants in this study recognised the pressures of health care work and accepted that the expectation of 'consistent compassion' was not necessarily realistic, it was still seen as an important goal. RELEVANCE TO CLINICAL PRACTICE: Participants held clear expectations regarding practitioners' communication skills and used these as a proxy for compassionate practice. The 'Framework for Compassionate Inter-personal Relations' may be used to promote reflection on the implementation of compassionate practice. It may also be used to highlight areas of focus when conducting values-based recruitment activities.

How do patients and their family members experience the transition from peritoneal dialysis to incentre haemodialysis? A multisite qualitative study in England and Australia.

BACKGROUND: While numerous studies have explored the patient experience of dialysis or other end-stage kidney disease (ESKD) treatments, few have explored the process of transitioning between dialysis modalities. This study aimed to develop an in-depth understanding of patient and caregiver perceptions and experiences of the transition from peritoneal to haemodialysis (HD) and to identify ways in which transitions can be optimised. METHODS: Fifty-four in-depth, semi-structured interviews were undertaken at six study sites across the West Midlands, UK (n = 23), and Queensland, Australia (n = 31). Thirty-nine participants were patients with ESKD; the remainder were family members. An inductive analytical approach was employed, with findings synthesised across sites to identify themes that transcended country differences. RESULTS: Of the 39 patient transitions, only 4 patients reported a wholly negative transition experience. Three cross-cutting themes identified common transition experiences and areas perceived to make a difference to the treatment transition: resistance to change and fear of HD; transition experience shared with family; and bodily adjustment and sense of self. CONCLUSION: Although each transition is unique to the individual and their circumstances, kidney care services could optimise the process by recognising these patient-led themes and developing strategies that engage with them. Kidney care services should consider ways to keep patients aware of potential future treatment options and present them objectively. There is potential value in integrating expert support before and during treatment transitions to identify and address patient and family concerns.

Telerehabilitation for physical disabilities and movement impairment: A service evaluation in South West England.

RATIONALE, AIMS AND OBJECTIVES: Telerehabilitation was used to ensure continued provision of care during the COVID-19 pandemic, but there was a lack of guidance on how to use it safely and effectively for people with physical disabilities and movement impairment. In this service evaluation, we aimed to collate information on practitioner and patient experiences, challenges and facilitators, and examples of best practice to inform the development of an online toolkit and training package. METHODS: Guided discussions were carried out with 44 practitioners, 7 patients and 2 carers from five health and social care organisations in South West England, and analysed thematically. RESULTS: Practitioners and patients had positive experiences of telerehabilitation and were optimistic about its future use. Recognized benefits for people with physical disabilities included greater flexibility, reduced travel and fatigue, having appointments in a familiar environment and ease of involving family members. Challenges encountered were: technological (usability issues, access to technology and digital skills); difficulties seeing or hearing patients; the lack of 'hands-on' care; and safety concerns. Facilitators were supported by colleagues or digital champions, and family members or carers who could assist patients during their appointments. Key themes in best practice were: person-centred and tailored care; clear and open communication and observation and preparation and planning. Practitioners shared tips for remote physical assessments; for example, making use of patient-reported outcomes, and asking patients to wear bright and contrasting coloured clothing to make it easier to see movement. CONCLUSION: Telerehabilitation holds promise in health and social care, but it is necessary to share good practice to ensure it is safe, effective and accessible. We collated information and recommendations that informed the content of the Telerehab Toolkit (https://www.plymouth.ac.uk/research/telerehab), a practical resource for practitioners, patients and carers, with a focus on remote assessment and management of physical disabilities and movement impairment.

Scope, context and quality of telerehabilitation guidelines for physical disabilities: a scoping review.

OBJECTIVE: To identify the available guidance and training to implement telerehabilitation movement assessments for people (adults and children) with a physical disability, including those recovering from COVID-19. DESIGN: Rapid scoping review. INCLUDED SOURCES AND ARTICLES: PubMed, CINAHL, PsychInfo, Cochrane, Embase, Web of Science, PEDro, UK Health Forum, WHO, National Archives and NHS England were searched using the participant-concept-context framework from 2015 to August 2020. Primary studies that recruited individuals with physical disabilities and guidance documents aimed at providers to implement movement-related telerehabilitation were included. RESULTS: 23 articles (11 primary research studies, 3 systematic reviews and 9 guidance documents) were included out of 7857 that were identified from the literature search. Two main issues were found: (1) telerehabilitation guidance (from both research studies and guidance documents) was not specific to movement-related assessment and (2) most primary research studies provided neither guidance nor training of movement-specific assessment to practitioners. Of the COVID-19 related guidance, two articles reported COVID-19 management that only referred to identifying COVID-19 status without references to specific movement-related guidance. CONCLUSIONS: Telerehabilitation guidance and training have existed pre-COVID-19, yet the lack of specific movement-related information and provider support is surprising. This gap must be addressed to optimise effective implementation of remote assessments for those with physical disabilities. REVIEW REGISTRATION: Open Science Framework: osf.io/vm6sp.

Emotional distress and adjustment in patients with end-stage kidney disease: A qualitative exploration of patient experience in four hospital trusts in the West Midlands, UK.

OBJECTIVES: To explore patient perceptions and experiences of mild-to-moderate emotional distress and the support offered by kidney units to patients with end-stage kidney disease. METHODS: In-depth, semi-structured qualitative interviews with patients (n = 46) being treated for end-stage kidney disease in four hospital Trusts, with data analysed thematically. RESULTS: Patients described multiple sources of distress and talked about the substantial burden that emotional challenges raised for their ability to manage their condition and develop coping strategies. Many patients did not feel it appropriate to disclose their emotional issues to staff on the kidney unit, due to a perceived lack of time for staff to deal with such issues, or a perception that staff lacked the necessary skills to provide resolution. Five themes were identified from the patient interviews, broadly related to patients' experience of distress, and the support offered by the kidney unit: i) the emotional burden that distress placed on patients; ii) patients' relationship with the treatment for their condition; iii) strategies for coping and adjustment; iv) patient-staff interactions and the support offered by the kidney unit, and v) the mediating impact of the treatment environment on patient experience of distress and their ability to raise emotional issues with staff. CONCLUSIONS: Many patients felt unprepared for the likelihood of experiencing emotional issues as part of their condition, for which pre-dialysis education could help in managing expectations, along with support to help patients to develop appropriate coping strategies and adjustments. These findings demonstrate the importance of recognising patient distress and ensuring that talking about distress becomes normalised for patients with end-stage kidney disease.

The prevalence of mild-to-moderate distress in patients with end-stage renal disease: results from a patient survey using the emotion thermometers in four hospital Trusts in the West Midlands, UK.

OBJECTIVES: To assess the prevalence of mild-to-moderate distress in patients with end-stage renal disease (ESRD) and determine the association between distress and patient characteristics. DESIGN: Cross-sectional survey using emotion thermometer and distress thermometer problem list. SETTING: Renal units in four hospital Trusts in the West Midlands, UK. PARTICIPANTS: Adult patients with stage 5 chronic kidney disease who were: (1) On prerenal replacement therapy. (2) On dialysis for less than 2 years. (3) On dialysis for 2 years or more (4) With a functioning transplant. OUTCOMES: The prevalence of mild-to-moderate distress, and the incidence of distress thermometer problems and patient support needs. RESULTS: In total, 1040/3730 surveys were returned (27.9%). A third of survey respondents met the criteria for mild-to-moderate distress (n=346; 33.3%). Prevalence was highest in patients on dialysis for 2 years or more (n=109/300; 36.3%) and lowest in transplant patients (n=118/404; 29.2%). Prevalence was significantly higher in younger versus older patients (χ2=14.33; p=0.0008), in women versus men (χ2=6.63; p=0.01) and in black and minority ethnic patients versus patients of white ethnicity (χ2=10.36; p=0.013). Over 40% of patients (n=141) reported needing support. More than 95% of patients reported physical problems and 91.9% reported at least one emotional problem. CONCLUSIONS: Mild-to-moderate distress is common in patients with ESRD, and there may be substantial unmet support needs. Regular screening could help identify patients whose distress may otherwise remain undetected. Further research into differences in distress prevalence over time and at specific transitional points across the renal disease pathway is needed, as is work to determine how best to support patients requiring help.

Distress in patients with end-stage renal disease: Staff perceptions of barriers to the identification of mild-moderate distress and the provision of emotional support.

OBJECTIVES: To explore staff perceptions of barriers to the identification of mild to moderate distress and the provision of emotional support in patients with end-stage renal disease. METHODS: Qualitative semi-structured interviews with staff in two hospitals (n = 31), with data analysed using a hybrid approach combining thematic analysis with aspects of grounded theory. RESULTS: Staff appeared very aware that many patients with end-stage renal disease experience distress, and most thought distressed patients should be helped as part of routine care. However, practice was variable and looking for and addressing distress was not embedded in care pathways. Interviews identified six themes: i) staff perceptions about how distress is manifested and what causes distress were variable; ii) staff perceptions of patients could lead to distress being overlooked because patients were thought to hide their distress whilst some groups were assumed to be more prone to distress than others; iii) role perceptions varied, with many staff believing it to be their role but not feeling comfortable with it, with doctors being particularly ambivalent; iv) fears held back some staff, who were concerned about what might happen when talking about distress, or who found the emotional load for themselves to be too high; v) staff felt they lacked skills, confidence and training, vi) capacity to respond may be limited, as staff perceive there to be insufficient time, with little or no specialist support services to refer patients to. CONCLUSIONS: Staff perceived significant barriers in identifying and responding to patient distress. Barriers related to skills and knowledge could be addressed through training, with training ideally targeted at staff with positive attitudes, but who currently lack skills and confidence. Barriers related to role perceptions would be harder to address. The study is relevant internationally as part of improving long-term condition pathways.

Attitudes of newly qualified doctors towards a career in general practice: a qualitative focus group study.

BACKGROUND: A key element of the NHS is universal access to a GP. Recently, UK general practice has been described as being in crisis, with training places unfilled and multiple practices reporting vacancies or facing closure. The recruitment of GPs continues to be a key focus for both the Royal College of General Practitioners (RCGP) and the government. AIM: To understand the attitudes of newly qualified doctors towards a career in general practice, to appreciate potential reasons for the crisis in GP recruitment, and to recommend ways to improve recruitment. DESIGN AND SETTING: A qualitative study comprising five focus groups with 74 Foundation Year 1 (FY1) doctors from one Yorkshire deanery. METHOD: Audio recordings were transcribed verbatim and thematic analysis undertaken. RESULTS: Foundation Year 1 doctors' thoughts towards a career in general practice were summarised in four themes: quality of life, job satisfaction, uncertainty surrounding the future of general practice, and the lack of respect for GPs among both doctors and the public. Participants felt that general practice could provide a good work-life balance, fair pay, and job stability. Job satisfaction, with the ability to provide care from the cradle to the grave, and to work within a community, was viewed positively. Uncertainties around future training, skill levels, pay, and workload, together with a perceived stigma experienced in medical schools and hospitals, were viewed as a deterrent to a career in general practice. CONCLUSION: This study has gathered the opinions of doctors at a critical point in their careers, before they choose a future specialty. Findings highlight areas of concern and potential deterrents to a career in general practice, together with recommendations to address these issues.

Taking hospital treatments home: a mixed methods case study looking at the barriers and success factors for home dialysis treatment and the influence of a target on uptake rates.

BACKGROUND: Despite healthcare policies and evidence which promote home dialysis, uptake rates have been falling for over 10 years in England. A target introduced by commissioners in the West Midlands provided a unique opportunity to study how hospitals can increase home-based treatment for a group of patients with complex life-threatening conditions. METHODS: Quantitative changes in home treatment uptake rates in seven hospitals in the West Midlands were compared with the rest of England for 3 years pre and post the introduction of the target in 2010, using a logistic regression model. Qualitative interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients explored the barriers and facilitators to increasing the uptake of home treatment and the impact of the target. RESULTS: Home treatment uptake rates increased significantly in the seven study hospitals compared with the 3 years prior to the introduction of the target and compared with the rest of England where rates remained static. The four main factors facilitating increased uptake were as follows: the commissioner's target, linked to financial penalties; additional funding for specialist staff and equipment; committed, visible clinical champions and good systems for patient training and ongoing healthcare support at home. The three main barriers were as follows: lack of training for non-specialist staff, poorly developed patient education and considerable unrecognised and unmet emotional and psychological patient needs. CONCLUSIONS: This study shows the impact of using targets with financial penalties to achieve change and how hospitals can increase significantly the uptake of home-based self-care for a group of patients with complex medical needs. It provides useful pointers to the main barriers and facilitators, which are likely to be relevant to other groups of patients who could be treated at home. It also highlights two neglected areas which need to improve if patients with life-threatening long-term conditions are to be encouraged to take up home treatment: individualised patient education which allows exploration of the impacts of treatment options and the provision of ongoing emotional support.