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Ethnographic fieldwork
Multiple sites were used in this ethnography as an exercise in ‘mapping terrain’. The goal was not ‘representation’ or ‘comparison’, but ‘identification’ to reveal the social processes surrounding continence care for PLWD in the acute setting. Therefore, it was important to observe interaction and performance, how continence care work was organised and delivered, and how it was communicated between different actors. This moves beyond the traditional examination of verbal communication to exploring tacit and non-verbal interaction, that is the multiple, complex and nuanced, but everyday, interactions and strategies that occur around continence care, which often ‘communicat[e] many messages at once, even of subverting on one level what it appears to be “saying” on another’.125 In these hospital settings, many such interactions are concealed and are part of backstage talk, veiled language, euphemism and informal conversations. Our approach remedies a common weakness in many qualitative studies, that is that what people say in interviews may differ from what they do or their private justifications to others, an issue that is exacerbated when the topic under discussion is taboo or concealed from everyday, public life.126 Our approach allowed us to respond to this and to examine the impacts of the organisation and delivery of continence care on PLWD and those caring for them over time.
This ethnography was carried out in six wards in three hospitals across England and Wales. These wards were purposefully selected to represent a range of hospitals types, geographies and socioeconomic catchments. Across these sites, 180 days of observational ethnographic fieldwork were conducted in areas of acute hospital care known to admit large numbers of PLWD, including general medical wards (e.g. acute wards for older people) and medical admissions units (or variants thereof). Approximately 500,000 words of observational fieldnotes were collected, written up, transcribed, cleaned and anonymised by the ethnographers (KF and AN). To provide a detailed contextual analysis of the events observed, the expertise involved and the wider conditions of patient care, we also carried out ethnographic (during observation) interviews with ward staff (n = 562) on multiple occasions. Case study participants who were living with dementia (n = 10) and their family members and carers (n = 20) also took part in ethnographic interviews (n = 30) during their admission and, in some cases, following discharge. Given the scope of our data set, in this report, we focus on presenting our analysis of the observational data, examining key features of continence care in these wards, including the use of continence ‘pads’ in everyday bedside care, the impact of the use of the continence ‘pads’ on PLWD and ward staff, and the influence of continence ‘pads’ on shaping ward cultures. To fully present the analysis of other aspects of continence care (e.g. catheter care) and of other data sets (i.e. staff interviews and case studies following PLWD and their families), these will be published separately.
Multisited ethnography defines the object of study via a number of techniques or tracking strategies. In the fieldwork, we recognised the importance of focusing on the ‘busy intersections’127 and of seeking out sites of tension where a large number of interests and identities are expressed. It is at these points that identity and culture become articulated, enacted and constructed. We aimed to provide a detailed understanding of the clinical and interactional work and processes that influence ward teams, their response to the pressing continence needs of patients living with dementia and the organisation of continence care for multiple patients within and across shifts. We also explored the work of other clinical staff (e.g. specialist registrars, consultants, allied health professionals and staff with managerial responsibilities) and auxiliary staff (e.g. domestic services) involved in the care of PLWD and their continence. We observed their actions and accounts to explore how individuals, teams and institutions prepare for, respond to, communicate and organise continence care in these settings, and the cultures that are both produced and maintained by these approaches.
At each hospital (n = 3), we conducted 30 days of observation in each ward (n = 2) over a period of 8 weeks of detailed fieldwork. Care was observed during day and night shifts, on weekdays, weekends and, where possible, public holidays. Observation periods ranged in duration from 2 to 6 hours and were reactive to events in the wards during observation. These periods of observation were followed by a further 8 weeks of follow-up data collection (including case study interviews and additional observation) so that, where possible, we could examine the implications of continence care practices for discharge and long-term care trajectories. Fieldwork always preserved patient dignity (as this study did not need to go ‘behind the screen’ to observe intimate care) and the goal of our observational strategy was to provide an in-depth evidence-based analysis of the management and context of continence care in these wards:
- The fieldwork used non-participant observation and concentrated on the visible work of nurses and HCAs who are responsible for continence care. Other health-care staff were also included, as they are involved in wider continence assessment and decision-making for this patient group.
- The fieldwork focused on ward routines where continence care took place or was prompted, including observation rounds, personal care routines, medication rounds and mealtimes.
- The fieldwork observed responses to personal alarms, calls for assistance and decisions to prioritise or defer to examine the classification, urgency and management of patient continence care needs when it disrupted ward routines and schedules.
- Communication and language around continence care were examined, including everyday interactions and strategies used in the wards, communication between staff, and communication with PLWD and their families.
- The fieldwork focused on ward practices of assessment and management of continence care for PLWD by ward staff (i.e. nurses and HCAs), the medical teams and other staff when they were involved in continence care, assessment and decision-making.
- Shift handovers were observed to examine everyday ward classification practices of continence and incontinence, and explore how these classification practices informed the organisation and planning of patient care during shifts and how these classifications entered risk assessment and discharge planning.
- The technical and procedural work around continence care management (e.g. types and use of pads), assessment and recording was examined.
- The fieldwork focused on observing conversations with carers as opportunities for sharing information about continence and how these conversations might best be managed with regard to decisions about discharge and place of discharge.
- The study collected routine ward data, providing a context and an understanding of the workload around both everyday care routines and continence care in these wards.
This in-depth evidence-based analysis enabled us to provide detailed understandings of organisational and interactional care processes that were having an impact on the responses to and the management and delivery of continence care for this patient group.
Working in acute wards required the researchers to adopt a range of observational practices and strategies. Observation time was spent standing, rarely sitting, reflecting the pace of work of the teams and the widespread hospital staff in them. Our practice was to stand in the corridor, usually close to an alcove, sink, trolley or equipment that was already blocking part of the walkway, where there was space to stand out of the way of the team, but we could still view areas of the ward and the events taking place there. We also shadowed and walked with individual members of staff and teams as they worked in the ward. The built environment of the observed wards was highly variable: some wards consisted of a central hub with satellite bays, whereas other wards took the form of a long corridor either with or without windows onto bays and rooms. In all wards the researchers positioned themselves appropriately in the corridors to maximise visibility while minimising obstruction.
Our strategy was comprehensive note-taking, with notes written up as more detailed accounts. The researchers wrote extensively during these periods of observation, using A4 spiral-bound notepads. Writing was typically carried out with the notebook in hand, writing as we were standing or walking. The fieldnotes recorded took the form of a running record of events and incidents and included details and near-verbatim text of conversations and interactions. The opposite side of the notebook remained clear of fieldnotes and was used to insert thoughts and any additional points or queries to follow-up on or expand later. Note-taking was clearly visible to all staff and patients in the wards, and both staff and patients had natural opportunities (and were offered opportunities by the team) to ask questions about our notes. Staff were granted access to look at the fieldnotes if they requested this.
Ethnographic interviews with ward staff
To provide a detailed understanding of the influences on HCPs’ response to continence care, ethnographic (during observation) interviews focused on and were predominantly carried out with nurses (across all grades), HCAs from a range of disciplines (e.g. clinical staff, foundation year doctors, junior doctors, registrars, consultants, physiotherapists, occupational therapists, pharmacists and specialist dementia teams), staff with co-ordinating responsibilities (e.g. ward clerk and discharge co-ordinators) and auxiliary staff (e.g. domestic services) where appropriate. These interviews (n = 562) with ward staff were carried out over multiple occasions and during and across shifts as staff cared for PLWD in each ward. These interviews had a broad focus on the organisation and delivery of everyday care and continence care, and allowed us to question routine practices, rationales and decision-making to understand what staff were doing and why:
- What was the articulation work in acute ward settings and how did staff account for and make sense of their actions?
- For staff working with PLWD and providing continence care, what were their experiences, what training was provide for this type of care and what informed their practices?
- What aspects of caring were defined as difficult, demanding or rewarding, and were staff confident in caring for this patient group?
- What were the barriers to and enablers of supporting PLWD?
- What were the recognition and rewards from patients, relatives, colleagues and managers for providing care for this group?
Case studies
A number (n = 10) of patients were recruited for case studies. We aimed to follow individuals living with dementia and their family carers from initial admission to the acute ward through to being discharged home or to long-term care and to follow their short-term care pathways. However, we were not able to seamlessly identify and follow people through an admission. The organisation of hospital admissions, with patients admitted, transferred and discharged on these wards 24 hours per day, meant that identifying and tracing a patient was not always possible, requiring the availability of the nurse in charge of the ward to access systems on behalf of the researcher. These obstacles meant that we recruited 10 patients for case studies rather than 12, which was our objective, but these patients represented a range of diagnostic, prognostic and sociodemographic factors, including patients with a range of continence care needs, reflecting our aims of including people with diverse experiences.
The goal of our study was to support PLWD and their families, and to share their experiences of an acute hospital admission. However, the case studies provided limited data that specifically related to continence care. Nevertheless, these data contribute to our wider understandings of the experiences and perspectives of an acute admission and its consequences for PLWD and their families. To fully represent the experiences PLWD, and their families, a separate analysis will be published.
Sampling
Sampling in ethnography requires a flexible, pragmatic approach that involves using evidence from available literature and a range of variables that may influence the phenomena under observation. Probability sampling is inappropriate and, therefore, non-probability sampling was used to provide analytically, rather than statistically, generalisable findings.128,129 Using this approach, the number of sites and participants in the sample was judged not on the basis of size, but by the nature and scope of the study aims, the findings of our syntheses, the quality and appropriateness of the sample, and the achievement of theoretical saturation of data.129
Sampling of hospitals and ward sites
Hospital settings are well suited to an ethnographic approach.130,131 We identified a range of variables that may influence the phenomena under observation using purposive and maximum variation sampling to include three sites that represented a range of hospital types, geographical location, expertise, interventions and quality. In these hospitals, we included sites of care (e.g. assessment units and general medical wards) that received a large number of patients living with dementia, with a wide range of continence care needs and who required acute medical attention. Detailed descriptions of these hospital sites and profiles of the participating wards can be found in Appendix 1.
Sampling in each acute hospital site
Although our sites (i.e. acute hospitals and wards) were standardised, with sequential and systematic data collection, there was some variation between sites. We applied theoretical sampling in sites to achieve robust analytic concepts in the analysis. Informed by grounded theory, sensitising concepts from the ongoing analysis fed into each stage of data collection, expanding the research process to capture emerging relevant aspects in the ongoing analysis. The focus was on ‘discovery’, ensuring the grounding of emerging concepts in data and the reality of the settings.132
Sampling and recruitment of staff for observation and interviews
We followed the routine and everyday work of nurses and HCAs. We used purposive sampling to include a wide range of clinical grades and roles across the ward settings. In addition, we included other clinical staff, staff with co-ordinating responsibilities and auxiliary staff who were also involved in the care of PLWD and in continence care.
Sampling and recruitment of patients for observation
It was not possible to predict the type of patients who would be present in acute hospital wards during the fieldwork period. However, we were confident from our previous research106 that PLWD would constitute a significant population in these wards. Details of the populations in these wards are found in Appendix 1.
Ethics approvals
Research Ethics Committee (REC) approval for the study was granted by the NHS Research Ethics Service via the Wales REC 3 on 19 April 2018 (reference 18/WA/0033), with approval from the Health Research Authority (London, UK) and Health and Care Research Wales (Cardiff, UK) granted on 5 September 2018 [Integrated Research Application System (IRAS) 239618/protocol 4804]. The research project was approved for the purposes of the Mental Capacity Act 2005,133 confirming that it met the requirements of section 31 of the Act in relation to research carried out as part of this project on or in relation to a person who lacks capacity to consent to taking part in the project. Recruitment for the study was managed and recorded through the Central Portfolio Management System, beginning on 11 October 2018 and ending on 31 October 2019. A total of 108 participants were recruited to the study.
The safety of all participants was a key priority at each stage of the study. Before commencement, the ethics of observing care and of reporting, where necessary, what was observed was frequently discussed with the hospital sites and our carers group. In meetings with the REC that approved this study, it was clarified that, although neither of the researchers (KF and AN) had a clinical duty of care (i.e. being academics without clinical qualifications or professional affiliation), they would be bound to safeguard any patient participants observed during the project.
Prior to commencement, both researchers, experienced in both hospital ethnography and conducting research with PLWD, renewed their Good Clinical Practice certification and upgraded their existing Protection of Vulnerable Adults level 1 certification by completing Safeguarding Vulnerable Adults levels 1–3. The researchers were made aware of safeguarding and whistleblowing procedures at each site and had a named member of staff (i.e. the site principal investigator or a senior nurse on shift) to contact if malpractice or behaviour that put vulnerable patients at risk was observed. Both researchers underwent full occupational health checks, held honorary contracts with the NHS health boards and trusts, and had up-to-date Disclosure & Barring Service certification and NHS research passports.
Several months in advance of the period of observation at each ward, the research team visited the wards to introduce the study to the ward staff and to discuss the study aims with relevant staff. These meetings were repeated 24 hours before observations started, in handover meetings in week 1 of observations and to individuals throughout the study to ensure that ward staff were aware of the study, to answer questions and to recruit staff to the study.
Over the course of the observations, the researchers saw many aspects of everyday practice that would not be considered ‘best practice’ or in the interests of the individual patient. The examples of practice presented in this report were not isolated and formed part of systemic and established everyday routine practice in every ward at each hospital site. We never observed individual malicious behaviour or isolated incidents of deviance that placed a vulnerable adult at risk. Instead, we observed how the everyday routine organisation and delivery of continence care itself often placed the vulnerable person living with dementia at risk, as a part of the routine practices and established cultures of these hospitals and the wards within them. At no point did the researchers feel that any individual or ward team was acting in a way that necessitated escalating or whistleblowing.
The researchers did, however, frequently intervene to support PLWD and their families and carers, where necessary, to protect the comfort of the patient. PLWD would frequently tell the researchers that they wanted to go to the bathroom or that they were in pain, or share concerns about, for example, home, family or pets, or how to pay for their care. In response to disclosures, the researcher (with permission from the patient) would inform ward staff and ensure that this was attended to by the ward team.
The researchers were sometimes the only member of ‘staff’ spending uninterrupted time in a specific area of a ward and so would regularly ask patients if they needed anything. Sometimes, when ward staff were absent or could not be called quickly to a bay, the researchers provided immediate support. For example, were a patient at immediate risk of physical danger, the researchers would call staff and, if necessary, intervene. Similarly, the researchers would fetch cups of tea, pour glasses of water and carry out other simple tasks in these wards when requested and when permitted. Although the researchers accept that this may have, on occasion, contaminated the purity of their data, the welfare of those in the field of observation was always the priority.
Between sites, the emergent analysis was regularly presented to the research team, including nurses, clinicians, trust leads, PLWD and family carers, and, although it was agreed that the care observed could be detrimental or distressing to a person living with dementia, it was also recognised as routine and recognisable as the everyday practice of acute ward staff.
Although, in isolation, some of the descriptions of continence care presented in this report may appear to breach patients’ rights, we hope to have demonstrated in our analysis that these were not isolated incidents, but rather the everyday reality of the care delivery that each person living with dementia will experience during admission to acute hospital care. The results presented in this report also show that nurses and HCAs, likewise, experience distress, with little organisational support or recognition of the care required to respond to the continence needs of PLWD in ways other than those outlined here. The cultures of these wards prioritised risk reduction and timetabled routines over the comfort or preferences of PLWD. The actions of nurses and HCAs in response to continence needs presented in this report were carried out in good faith, attempting to protect the patient and the ward, and to respond to the policies and perceived expectations of the wider institution. We hope that the evidence presented here highlights the challenges faced by ward staff as they deliver care in the acute environment, and the need to better support both patients living with dementia and staff in this setting.