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

Abstract 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.


| INTRODUC TI ON
There has been a drive in recent years to define and improve patient-centred care 1,2 with patient experience established as an essential component of quality in health care. 3 There is a well-established national patient experience survey programme in the NHS, 4 but the connection between data collection and improvement has not been strong. 5 There are a number of reasons why quantitative findings may not have translated into improvements in patient experience, and potential barriers which have been identified include a lack of regular measurement and performance feedback and a lack of experience of interpreting and using survey data. 6 However, the premise behind the quality improvement (QI) programme which is the focus of this study is that qualitative data are more appropriate for this purpose since there is a need to understand how patients experience a service, in order to improve that experience. The second premise is that experiential approaches to collecting information, such as shadowing, will better enable health-care staff to understand the immediate experience of care 'through the patient's eyes' [7][8][9] and thus make service improvements that will target what is important to patients and their families.
It is known that service improvement approaches introduced to the NHS in recent years have not all been acceptable to staff, 10 and QI projects can have a negative association with worker satisfaction. 11 The experience of staff who take part in health-care QI initiatives is an under-researched area, including the acceptability of experiential approaches. Researchers in one study observed that evaluations of projects to improve patient experience overlooked a key outcome: 'deeper, longer term changes in attitudes and behaviours in staff. ' 12 Such changes in staff may also link to changes for patients and might help to understand what engages and motivates health-care staff to make quality improvements, and how to appeal to their intrinsic motivation, a key area of interest in QI research. 13 Patient shadowing, a technique involving accompanying patients as they receive care, has been highlighted as potentially having a valuable role in advancing patient-centred care. 9 However, health-care staff perspectives about undertaking shadowing have not yet been explored.
The aims of this study were to: 1. Seek to understand the process of shadowing from the perspective of staff.
2. Explore the experience of shadowing for staff. 3. Explore the impact of shadowing on health-care staff's knowledge and understanding of the care experience, and their subsequent motivation to make improvements.

| Context
The Patient and Family Centred Care (PFCC) programme, first adopted with orthopaedic patients in the USA in 2006, 14 has been adapted by The Point of Care Foundation, a not-for-profit organization that works to improve the experience of patients and staff in the NHS. The participants studied here, members of 19 multidisciplinary health-care teams from across England, were the fourth cohort to take part since 2010, and the focus of this particular programme was end-of-life care, a priority for NHS England (one of the programme's funders) at the time. The programme follows a collaborative learning model, and participants attended three learning events between July 2017 and April 2018. Participants were taught conventional QI methods but in addition a key requirement was for health-care staff to shadow patients in their service, to inform their understanding of where to focus improvement efforts. 15 Guidance (both verbal and in a written handbook) was provided beforehand for all shadowers, including procedures to follow if they noted anything of concern.
1 Patients to be shadowed were selected at the discretion of clinical managers locally, and wherever possible, they were unknown to the shadower, although there were occasional exceptions. Consent was gained from them and/or a family visitor. seven face-to-face (at work).

| ME THODS
The data from the qualitative interviews 2 were transcribed verbatim and analysed using thematic analysis (TA), 17 allowing the researcher to find shared themes across a diverse sample and a broad range of experiences. 3

Data analysis followed Braun and
Clarke's six steps. 18 The transcripts were coded by hand, line by line. Inductive codes were created, guided by what the participants said, and additional subcodes were created while interpreting the data, drawing on the primary author's professional experience and a review of the relevant literature. These were grouped into themes and subthemes, using an iterative approach involving discussion with the research team, enabling codes to be checked against sample transcripts and further refinement of themes and subthemes. The structure and hierarchy of themes was also shared and discussed with work colleagues responsible for the QI programme which was the focus of the study. This was important for the purposes of rigour but also enabled the researcher, as part of the organization running the programme, to be reflexive and aware of potential issues related to 'insider status,' and the need to continuously challenge assumptions.
Ethics approval for the evaluation was obtained from the University of Westminster Ethics Committee. A recurring theme specifically related to how appropriate the environment looked or felt for patients who were dying, whether in bays, onwards, hospital side rooms or nursing home single rooms. In a nursing home room, the environment was described as dreary: 'the room 2 The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. 3 There was no PPIE in the design or conduct of the study.

F I G U R E 1 Steps in the recruitment process
Step 1 •A verbal invitaƟon to be interviewed was issued at the second learning event to everyone who had completed shadowing Step 2 •Individual programme parƟcipants from different seƫngs were approached at this event. This yielded the first three interviews.
Step 3 •Shadowing acƟvity was mapped to refine the plan for a purposive sample and email invitaƟons were sent to teams.10 interviews were completed in total before the final event.
Step 4 •To make sure that the maximum variaƟon sample was achieved for the second batch of ten interviews, the researcher targeted recruitment (via email invitaƟon) using responses to the survey completed by parƟcipants at the final event.
Step 5 •Snowballing was used, with a quesƟon at the end of interviews asking "who else do you think it would be helpful to talk to?". Three more were recruited in this way.
Step 6 •Finally, aƩempts were made to sample excepƟons and two cases were recruited where it was known shadowing had noƩaken place. Interestingly, in spite of the willingness to try shadowing, the most often cited emotions before shadowing were apprehension, anxiety and worry. The most common concern was about being intrusive or unwelcome: I didn't want to put anybody in a difficult position and I didn't want to be put in a difficult position.
[female, quality improvement role] Shadowing patients who were dying intensified these concerns, particularly anxiety expressed by clinicians and non-clinicians alike about whether it was appropriate to intrude at such a private time, when there may have been only a few days left for the patient and their family. This appeared to reflect a concern about the patients and about the shadower's own assumed awkwardness in the situation and was the predominant reason given by those who did not shadow for their decision. Secondly, others were worried about upsetting colleagues, who might feel that they were being observed and judged, 'to make sure they do things in the right way.' Thirdly,

| How the experience of shadowing brought about change for patients and staff
Shadowing appeared to engender empathy, that is an assumed capacity to understand or feel what another person is experiencing, or to place oneself in another's position. Both cognitive empathy (how we understand other people) and affective empathy (our emotional reactions to people 19) were claimed by participants to increase understanding and emotional engagement with patients, as outlined below:

| Emotional response: affective empathy
Although none of the participants used the word empathy, affective empathy-even if not described in this language-was seen in

| Motivation
One manager noticed how her team engaged emotionally with shadowing and that it had given her staff 'a thirst for quality improve-

| D ISCUSS I ON
This study has elaborated on the processes, key experiences and impacts of shadowing, and has revealed the significant place of emotion in this work. Our paper uncovered the nature of the most challenging aspects of the work of shadowing for health-care staff, which proved to be emotional, rather than practical, professional, logistical

| The place of emotion
Beyond the practical aspects of shadowing, this study points to deeper fears that underpin the practice, of being in unusual and uncomfortable situations with patients, where professional identity becomes irrelevant, and so cannot provide insurance against awkward situations. Even though 'the development of necessary professional detachment' 21 is no longer taught formally to medical and nursing undergraduates, detachment is still acknowledged as part of the 'hidden curriculum' 22 and as a mechanism for coping with the nature of the work health-care staff do, and there is debate about how too much emotional involvement with patients can lead to burnout. 23,24 In studies of trainee doctors, for example, it has been noted that detachment increases over time. 25 Shadowing represents a challenge to this detachment. Menzies-Lyth 21 went further, describing how defences are a natural reaction to the anxiety of caring for, and being in constant close proximity to patients who are sick, suffering or dying, and this was suggested in the comment of one participant: 'there is a fear of empathizing too much.' Participants who intervened or made judgements from a clinician's point of view were not shedding the protection of their professional role. Indeed, to a greater or lesser extent, some participants found ways (whether intentional or not) of resisting the possibility of shadowing breaking through their professional detachment. One of these may have been 'comfort seeking,' 13 when shadowing became merely an exercise in reassuring themselves that care is good, or not as bad as they had feared. However, many clinical participants did respond emotionally, and it would be interesting to explore further how far professional training, personality and life experiences contributed variously to their response.
The importance of reflexivity for researchers when shadowing has been highlighted, 9 and this study points to how it would be equally valuable for non-researchers who undertake shadowing to reflect be-

| Motivation
This study has illustrated the relationship between emotional response, increased understanding and motivation. A review of formal evaluations of programmes to improve quality in health care identified factors needed for success and identified 10 challenges; the first of which was convincing clinical teams that there is a real problem to be addressed. 27 It was recommended that ' those designing and planning interventions should be careful to target problems that are likely to be accepted as real' and suggested using patient stories to secure emotional engagement and engage the clinicians in defining what they would like to improve. Shadowing appears to achieve these goals.
We found that the experience of shadowing and being with patients at end of life has a strong emotional impact for some staff, which increases their motivation to engage with the improvement programme, and to make the experience of patients and their families better. The concept of intrinsic motivation may illuminate the link between empathy and motivation to engage in improvement efforts. Herzer and Pronovost 28 have asserted that QI initiatives, if they are to engage doctors/clinicians, must 'light the intrinsic fire.' Shadowing appears to lead to empathy-or at least identificationand sparks a desire to consciously provide kinder and more compassionate care for patients, and to make changes to achieve this.
Participants spoke of being reminded through shadowing of why they had wanted to work in health care. Participants in the study found it rewarding to be able to understand how the experience of patients could be improved and then to make the changes themselves. Often data are provided about patient experience, or staff are asked to make improvements, but the emotional engagement is lacking. This study makes a case for introducing shadowing to the range of tools available for collecting data, and co-production of better services to improve patient experience, by emphasizing 'the person in the patient.' 2

| Limitations and strengths
The study did not aim to discover the experience of those being shadowed, so patients and family members were not interviewed; this could be a focus for further research. However, participants noted that patients at the end of life, and their families, generally appeared to appreciate being shadowed as they felt it was a demonstration of attention to their experience of care. The response rate was high overall, and the sample represented the gender distribution of the programme, but further research might explore a programme with more male participants. Time pressures on busy health-care staff were apparent, and although efforts were made to conduct as many face-to-face interviews as possible, away from the immediate work environment, it was a pragmatic decision to conduct telephone interviews at times that suited the participants. Nevertheless, in spite of the practical difficulties, the interviews yielded a valuable depth of data, and this is the first study to explore the accounts of health-care staff shadowing patients.

| Implications of findings for practice
This study demonstrates the importance of preparing staff for the emotional impact of shadowing, in conjunction with the current practical guidance. Although this study's context is specific to patients at the end of life (and therefore brings specific challenges), it has highlighted that shadowing, probably in any context, is an activity that places staff in a situation with their patients that is different from usual and that it might be uncomfortable to step out of role

| CON CLUS ION
Initial anxieties and fears about shadowing appeared to be generally unrealized, and many spoke of it being a rewarding experience, and that it 'reconnected' them with patients and their own motivation to care. Shadowing appears to be an acceptable approach to QI which engages staff. For some it had a powerful personal impact emotionally, intensified for some by shadowing patients who were dying.
Participants reported increased understanding of the experience of care and went on to describe improvements they had made to the care experience for patients and families. Shadowing enables cognitive and affective empathy with patients, which combined, works to motivate staff, who with the right preparation and support, can develop the skill to make real changes to patients' and families' experience of care.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

E X A M PLE S O F CH A N G E S R ECO R D ED BY TE A M S I N TH I S S TU DY
Hospital team 1 • Increased use of priorities of care individualized care plans for patients in last days of life.
• Improved development of individualized advanced care plans for patients discharged home.
• Lockdown lunch where all staff, including managers, come to the ward to help patients eat.
• Open visiting times to enable visitors to care for loved ones.
• Increased drive to recruit more volunteers to help with emotional support and activities, and 'adopt a grandparent' scheme.
• Safety huddle introduced to improve communication within MDT regarding challenges of that day.

Hospital team 2
• Musicians invited to wards to improve the boredom and environment.
• Work to improve information board on wards to improve communication between MDT.
• Employed a new role on the wards to reduce complex discharge delays.
• Use of blue plates as proven to encourage eating and thus improve nutrition.

Hospital team 3
• Purple Butterfly sign for room door to highlight to staff that a patient was nearing end of life.
• Purple Butterfly symbol on electronic flow board to highlight to bed managers and other professionals that there were dying patients on the ward.
• Purple Butterfly sticker on drug charts to those pharmacists prompted to check ward drug stocks and charts processed quickly through pharmacy.
• "Tell us about you" form to encourage staff to ask patients about personal things that are important to them in advance care planning.
• New symptom chart so that patients are asked a number of patient-centred questions.
• Delivery of ward-based training for staff and half-day communication skills workshops to improve confidence in having conversations about end of life care.

Hospital team 4
• Call bells in reach.
• New beds for family to stay.
• Designated parking for relatives visiting patients near end of life.
• Provision of food for relatives and a quiet room.

CCG
• 'Red bag' initiative for care homes, with all necessary information and paperwork for advance care planning, with training rolled out across CCG.
• General communication training being rolled out across CCG.
• Care home bedrooms refurbished.