Understanding patient and family utilisation of community-based palliative care services out-of-hours: Additional analysis of systematic review evidence using narrative synthesis.

BACKGROUND: Community-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design. METHOD: Data on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls. RESULTS: Community-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse). CONCLUSIONS: Out-of-hours services are highly used up to midnight, and particularly by patients' family and carers. Recommendations to commissioners and service providers are to: • Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times. • Ensure that family and carers are provided with clear contact details for out-of-hours support. • Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier. • Listen to patients, family and carers in the design of out-of-hours services, including telephone services. • Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service.

How is community based 'out-of-hours' care provided to patients with advanced illness near the end of life: A systematic review of care provision.

BACKGROUND: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. AIM: To review systematically the components, outcomes and economic evaluation of community-based 'out-of-hours' care for patients near the end of life and their families. DESIGN: Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting. DATA SOURCES: Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022. RESULTS: About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation. CONCLUSIONS: The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services.

The most important components of out-of-hours community care for patients at the end of life: A Delphi study of healthcare professionals' and patient and family carers' perspectives.

BACKGROUND: Community services for palliative patients outside normal working hours are variable and the best evidence-based models of care have not been determined. AIM: To establish expert consensus on the most important components of out-of-hours community palliative care services. DESIGN: Delphi study. The first round listed 68 components generated from systematic literature reviewing, focus groups with healthcare professionals and input from the project's patient and public involvement advisory group. The components deemed 'essential' by over 70% of participants in the first round were refined and carried forward to a second round, asking participants to rank each on a five-point Likert scale (5 highest to 1 lowest). The consensus threshold was median of 4 to 5 and interquartile range of ⩽1. PARTICIPANTS: Community specialist palliative care health professionals, generalist community health professionals and patients and family carers with experience of receiving care out-of-hours at home. RESULTS: Fifty-four participants completed round 1, and 44 round 2. Forty-five components met the threshold as most important for providing out-of-hours care, with highest consensus for: prescription, delivery and administration of medicines; district and community nurse visits; and shared electronic patient records and advance care plans. CONCLUSIONS: The Delphi method identified the most important components to provide community palliative care for patients out-of-hours, which are often provided by non-specialist palliative care professionals. The importance placed on the integration and co-ordination with specialist palliative care through shared electronic records and advance care plans demonstrates the reassurance for patients and families of being known to out-of-hours services.

A qualitative study exploring patient shadowing as a method to improve patient-centred care: 10 principles for a new gold standard.

BACKGROUND: In recent years, there has been an increased emphasis on patient experience as a dimension of quality in healthcare and subsequently a drive to understand care from the patient's perspective. Patient shadowing is an approach that has been used in service improvement projects, but its potential as a quality improvement (QI) method has not been studied in practical and replicable detail. OBJECTIVE: This new research aimed to produce clear guidance on patient shadowing for future Quality Improvement projects. METHODS: Qualitative interviews were conducted with 20 clinical and non-clinical participants of a national QI programme in UK, which focused on improving the experience of patients at the end of life. All participants had shadowed patients. Data were analysed using a thematic analysis. RESULTS: There were two broad themes: (i) The process of shadowing: how participants went about shadowing, adopting different approaches and making judgements about the care they observed and any challenges they had encountered. (ii) The impact of shadowing: on the engagement and motivation of those who shadowed and in terms of service changes to benefit patients and their families. CONCLUSION: The findings led to a new set of 'gold standard' principles to benefit both staff and patients where shadowing is used as a QI method. These, together with new guidance, will ensure that shadowing is conducted as a team exercise, that all those involved are more robustly prepared and supported and that its purpose as a method to improve patient experience will be better understood.

'As soon as you've been there, it makes it personal': The experience of health-care staff shadowing patients at the end of life.

BACKGROUND: Patient shadowing is an experiential technique intended to enable those who shadow to understand care experience from the patient's point of view. It is used in quality improvement to bring about change that focuses on what is important for patients. AIM: To explore the acceptability of patient shadowing for health-care staff, the impact of the experience and subsequent motivations to make improvements. METHOD: A qualitative study with a diverse sample of 20 clinical and non-clinical health-care staff in different end-of-life settings. Data were analysed thematically. RESULTS: Anticipated anxieties about shadowing did not materialize in participant accounts, although for some it was a deeply emotional experience, intensified by being with patients who were at the end of life. Shadowing not only impacted on participants personally, but also promoted better insights into the experience of patients, thus focusing their improvement efforts. Participants reported that patients and families who were shadowed welcomed additional caring attention. CONCLUSION: With the right preparation and support, patient shadowing is a technique that engages and motivates health-care staff to improve patient-centred care.

The importance of power, context and agency in improving patient experience through a patient and family centred care approach.

BACKGROUND: Research shows that the way that healthcare staff experience their job impacts on their individual performance, patient experience and outcomes as well as on the performance of organisations. This article builds on this literature by investigating, with multi-disciplinary clinical teams as well as patients and relatives, what factors help or hinder changes designed to improve patient experience. METHODS: Qualitative research looking at patient- and family-centred care (PFCC) on two care pathways (stroke and hip fracture) was conducted in England and Wales. A realist approach combined with participatory action research was used to account for the complexity of organisational context and power relations. Multiple methods were used, including documentary analysis, participatory steering groups with staff and patient representatives, observations of the care pathways (n = 7), staff and patient and relative focus groups (n = 8), and hospital staff, patient and PFCC staff interviews (n = 47). RESULTS: Findings highlight multiple factors that support and hinder good patient experiences. Within individual care, paternalistic values and a lack of shared decision-making and patient-centred care still exist. Supportive interdisciplinary teamwork is needed to address issues of hierarchy, power and authority amongst staff and managers. At the organisational level, key issues of waiting times, patient flow, organisational resources and timely discharge affect staff's time and capacity to deliver care. In addition, macro contextual factors, such as finance, policy, targets and measures, set particular limits for improvement projects. CONCLUSIONS: Given this context, improving patient experience needs to go well beyond small-scale projects at the micro and meso level to incorporate a more critical understanding of systems, the wider organisational context and how power operates at multiple levels to enable and constrain action. In order to more meaningfully understand and address the factors that can help or hinder activities to improve patient experiences, PFCC frameworks and methods need to account for how power inequities operate and require the adoption of more participatory co-produced and empowering approaches to involve patients, relatives, carers and staff in improving complex healthcare environments.

Using experience-based co-design to improve the pre-treatment care pathway for people diagnosed with head and neck cancer.

BACKGROUND: Recent studies have highlighted that people diagnosed with head and neck cancer (HNC) have complex information needs. They are subject to multiple clinical appointments with numerous healthcare professionals in preparation for their treatment. Speech and language therapists (SLTs) are core members of the HNC multidisciplinary team, providing assessment, prehabilitation and counselling regarding potential treatment effects on the critical functions, including swallowing and communication. We believed the purpose of the pre-treatment speech-language therapy (SLT) consultation within this pathway is not well understood by patients. Whilst the benefits of prophylactic swallowing exercise prescriptions continue to be explored, adherence is a frequently cited challenge in clinical trials. We sought to enhance pre-treatment dysphagia services for patients with head and neck cancer (HNC) undergoing chemoradiation. METHODS: A participatory action research approach called experience-based co-design (EBCD) was undertaken at a tertiary cancer hospital in the UK. People who had previous radical radiation treatment for head and neck cancer and staff members within the head and neck unit were recruited to take part in in-depth, one-to-one interviews about their experiences of the pre-treatment SLT head and neck radiation clinic. Patient interviews were video-recorded, analysed and edited down to a 30 min 'trigger' film. At a subsequent patient feedback event, the film was shown and an 'emotional mapping' exercise was undertaken. Through facilitated discussion, patient priorities for change were agreed and recorded. At a staff feedback event, key themes from the staff interviews were discussed and priority areas for change identified. The project culminated in a joint patient and staff event where the film was viewed, experiences shared and joint priorities for change agreed. Task and finish groups were developed to implement these changes. RESULTS: Seven patients and seven staff members participated. All seven patients had undergone radical (chemo-) radiation for HNC. At least 2 months had elapsed since their final treatment date and all participants were within 9 months of their definitive treatment. Staff members comprised a radiation oncologist, two clinical nurse specialists, two head and neck dietitians and two speech-language therapists. Patients reported that overall, their experience of the pre-treatment clinic is positive. Patients value experienced staff, consistency of staff and the messages they provide and a team approach. Patients highlighted the need for different information methods including online/digital information resources and further information regarding the longer-term effects of treatment. Patients valued the purposes of prophylactic exercises and again advocated for supporting resources to be available in a range of online/digital media. Staff members raised the need for flexibility in appointment times and clearer messaging as to the rationale for a pre-treatment SLT appointment, including a rebranding of the SLT service. Seven key areas for improvement were identified jointly by patients and staff members including revision of patient and carer information, development of a patient experience video, information on timelines for recovery, a buddy system for patients before, during and after treatment, flexibility of appointment scheduling, seamless transfer of care between settings and SLT department rebranding. Joint patient and staff task and finish groups were initiated to work on these seven priority areas. CONCLUSIONS: We have worked in partnership with patients to co-design pre-treatment dysphagia services which are accessible and meet the individuals' needs. Task and finish groups are ongoing with staff and patients are working together to address priority areas for change. This work provides a good example for other centres who may wish to engage in similar activities.

Reflection for all healthcare staff: A national evaluation of Schwartz Rounds.

The emotional toll of working in healthcare is widely recognised, but staff rarely have time to reflect on their experiences. Schwartz Rounds provide an opportunity for all staff in a healthcare organisation to meet regularly and reflect on the human connections made with patients and the emotional impact of their work. They are now running in over 200 organisations across the UK & Ireland. In the first evaluation of a national sample in the UK, we review feedback received from a large sample of 402 Schwartz Rounds in a total of 47 organisations, including acute and non-acute NHS trusts and hospices. Analyses were undertaken to explore self-reported experiences of the Rounds, and differences between the proportions of professional staff groups attending. The overall experience of Schwartz Rounds was very positive across all settings. In particular, staff reported that Rounds helped them to gain insight into the working lives of their colleagues. There were no differences between the responses of clinical and non-clinical staff, indicating that all staff value a reflective space regardless of background. Healthcare staff value an opportunity to reflect on the emotional impact of their work. In increasingly overstretched and hurried services, it is a priority to provide this.

Capturing patient experience to improve healthcare services.

National surveys of NHS patients in the UK have captured patient satisfaction with healthcare services for more than 15 years. Although this data has been valuable in tracking trends over time and for comparison between healthcare services, there have been issues associated with the concept of 'satisfaction' and the lack of clarity regarding the purpose of collecting such data. The shift in focus to capturing patient experience rather than patient satisfaction is regarded as a positive change, particularly for the purpose of improving healthcare services and patient care. This article defines patient experience and describes the various ways that this data can be collected, in particular using qualitative approaches.

Designing services in partnership with patients.

A variety of methods are available to encourage health professionals to listen to patients and relatives, but are not routinely used to improve the quality of services. Experience-based co-design enables staff and patients to design services and/or care pathways in partnership. This article explains how the approach works in practice, outlines its benefits and details the resources available to help health professionals use it to improve patients' experiences.

Support for compassionate care: Quantitative and qualitative evaluation of Schwartz Center Rounds in an acute general hospital.

OBJECTIVE: To evaluate the impact of Schwartz Center Rounds, a multi-disciplinary forum to reflect on the emotional consequences of working in healthcare, on the staff of a large acute general hospital over a three-year period. DESIGN: Evaluation data following each Round were collected routinely from all staff attending over this period and analysed quantitatively and qualitatively. SETTING: An integrated university teaching trust with both acute hospital and community services in the North East of England. PARTICIPANTS: Over the three-year period of the study, 795 participant evaluation forms were returned by staff attending the Rounds. MAIN OUTCOME MEASURES: A standard evaluation form completed at the end of each Round by those present, including ratings on a five-point scale against each of eight statements and an opportunity to offer additional free text comments. RESULTS: The findings show a very positive response to all aspects of the Rounds by staff who attended. The most highly rated statement was: 'I have gained insight into how others think/feel in caring for patients'. This was reinforced by the qualitative analysis in which the primary theme was found to be Insight. There were no significant differences between disciplines/staff groups, indicating that all staff whether clinical or non-clinical responded to the Rounds equally positively. CONCLUSIONS: Schwartz Rounds are highly valued by staff from all disciplines, and by managers and other non-clinicians as well as clinicians. They appear to have the potential to increase understanding between different staff, and so to reduce isolation and provide support.

Supporting hospital staff to provide compassionate care: do Schwartz Center Rounds work in English hospitals?

OBJECTIVE: To assess (1) whether the Schwartz Center Rounds ("Rounds"), a multidisciplinary forum which brings together hospital staff to discuss the nonclinical, social and emotional aspects of caring for patients, could transfer from the US to a UK setting; and (2) whether UK Rounds would achieve a similar positive impact on individuals and teams, and hospital culture. DESIGN: The results reported are based on 41 qualitative interviews with context provided by additional quantitative research. SETTING: We introduced Rounds at two pilot sites, both NHS hospitals providing acute care. PARTICIPANTS: Over the one-year, ten-Rounds pilot period, Rounds were attended by 1250 staff across the two sites. We conducted qualitative research into the experiences of staff involved in implementing Rounds at the outset and the end of the pilot. MAIN OUTCOME MEASURES: Interviewees' assessment of the effects of Rounds on participants, their relationships with colleagues, and the wider hospital. RESULTS: The findings show that in the two pilot trusts, Rounds are perceived by participants as a source of support and that their benefit may translate into benefits for patients and team working; and that Rounds have the potential to effect change in the hospital culture. CONCLUSION: Rounds appear to transfer successfully from the US to the UK, and there is some evidence that they are having a similarly positive impact, but more research is needed.

Supporting staff to deliver compassionate care using Schwartz Center rounds--a UK pilot.

It is essential for staff to feel supported in their jobs if they are to continuously provide high quality compassionate care to patients. One way of supporting staff, of showing them that their health and wellbeing matter, is to offer them opportunities for compassionate dialogue about their experiences of delivering care--its rewards, frustrations and challenges--and their resulting thoughts and feelings. One such forum for these conversations is the multidisciplinary Schwartz Center rounds, now being piloted in two UK trusts with the support of the Boston based Kenneth B Schwartz Center and The King's Fund's Point of Care programme. Here we describe the history of the rounds, explore what makes their format unique and so powerful and report initial observations from the UK pilots.

Exploring how to measure patients' experience of care in hospital to improve services.

With the new requirement that patients' experience of care be measured as part of the drive to improve quality across the NHS, acute trusts face the challenge of choosing from a potentially dizzying array of options for carrying this out. The Point of Care programme, which aims to improve patients' experience of care in hospital and help staff to deliver the quality of care they would want for themselves and their own families, here explores its thinking on the topic. Although many questions remain, we conclude that the most effective approach is likely to be one that incorporates both quantitative and qualitative information to give a more complete picture of the care pathway in individual trusts. We encourage trusts--and in particular individuals responsible for and/or who want to improve patients' experience--to draw on the range of measures to develop strategies that are most appropriate for their individual settings and needs.

Exploring the wide range of terminology used to describe care that is patient-centred.

BACKGROUND: During the planning phase of The King's Fund's The Point of Care programme, we undertook a literature review, starting with the term 'patient-centred care'. We soon discovered the term not only had different meanings for different people but also that there were many related phrases with specific connotations in various professional contexts. When looking at the terminology that policymakers use, it seems that different terms--variations on 'patient-centred care'--have been favoured over the years. AIM AND METHOD: We decided to carry out our own research to investigate what language staff working in hospitals preferred to use when describing their care of patients. We collected data using focus groups and paired and single in-depth interviews. RESULTS: It seemed that the language hospital workers preferred to use was different, and that staff (some groups more than others) did not like much of the language that academics and policymakers use. CONCLUSION: It is important when working in a hospital context to use language that staffprefer.