DR SALLY-ANNE FRANCIS & DR SARAH YARDLEY
“I have spread my dreams under your feet; Tread softly because you tread on my dreams.” (W.B.Yeats)
“A rapid, focused ethnography will be conducted using a cross-sectional approach,” we said.
It sounds so neat and simple. Yet in this compact statement there are two parallel stories of navigating multiple tangible and intangible boundaries that just like circles, loops or hoops do not seem to have an obvious starting point, end point or limit to the number of times they can be traversed, even when the route becomes well-trodden. We might well be treading on other people’s dreams.
We have written this blog to capture our reflections when setting-up and carrying out our ethnography of work-as-done in NHS services when prescribing and using palliative medication across the contexts of hospital, hospice and home (Yardley et al, 2022). We use the term ‘people’ to collectively describe all our participants (patients, carers, & professionals) in this blog, because what we are finding is not role dependant.
Story one: as anyone undertaking research in the NHS will know, there are many hoops to be jumped through – enough to make a saga – before meeting potential participants.
Structural approaches to ethical review, governance and related institutional concerns had to be navigated to enter our research space where we wanted to collaboratively explore patient, carer and professional activities around medication management in symptom control in palliative care. While recognising such structures are usually created with good intent, we found institutionalised epistemological and ontological stances were challenged by our ethnographic approach that sought to understand, but not necessarily reconcile, different participant perspectives and to uncover their lived realities as fulsomely as possible, without imposing limitations on representing complexity, or making a priori assumptions about vulnerability or sensitivity.
Story two: We want to understand the real work of medication management for symptom control in palliative care.
We started with a framework of medication use as a multi-step process encompassing everything from identifying a need, deciding what to prescribe, the act of prescribing, dispensing, delivering, use/administration, evaluation and review of medication effectiveness, modifying medication regimens, deprescribing (stopping medication) and disposal of unwanted medication. We were not naïve enough to think this framework would represent reality. We believed that the boundaries were permeable, overlapping, discrete, concentric and boundary identification was all part of the ethnographic process. We theorised that there would be aspects of these processes that would receive much attention, becoming hot spots, and aspects that would be overlooked, that is cold spots.
And so, Sally-Anne entered the research space to collect data. Our ethnographic study is centred on the patient as the unit of analysis, and examines their movement with, or as can be the case without, their medications through the different boundaries of care. The focussed approach presented us with challenges in terms of limited time to develop relationships and trust for effective and efficient data collection, and identifying ways to achieve this when working at pace across different sites. Ultimately, we were led by the stories and remained flexible to move back and forth between sites to follow intersecting leads and capture narratives of importance. Investing in rapid building of relationships and trust remained critical to our approach as we considered single- concurrent-multi site decisions at each stage of the work in order to effectively situate ourselves for data collection.
Personal experiences while being a research team of two
As a non-participant observer new to the local setting, I, Sally-Anne, wanted to find the best method for data gathering and note-taking that was the least intrusive. Most fruitful was the ‘go along’ method (Kusenbach 2003, 463-464), where I could accompany people on their daily activities, such as hospital ward rounds, team meetings at the hospice, or bus journeys to home visits, chatting on the way about the things I had seen and heard, sense-checking and collating thoughts and perspectives.
I wanted to ensure that field notes had sufficient description to aptly record the dances and turn-taking of participants when undertaking activities so that they could be transformed into effective text for analysis. Notebooks were filled with acronyms, scribbled diagrams, arrows and references to key actions for onward exploration in future observations, as well as backwards to earlier notes previously made. Whispered apprehension expressed by those being observed needed reassurance and careful response – questions and comments such as “am I being checked on?” or “you’re trying to catch me out” – seemed of particular concern to those working in the health services but also with patients and carers in their own homes. Being present was vital to creating relationships and gaining trust, requesting and respecting as I went.
Ultimately, co-collecting observation and interview data gave an opportunity to hone our individual and joint understandings of what mattered most to participants. Involving multiple participants in multiple settings allowed activities to be exposed and explored as threads of interactions and assumptions, thereby adding colour to the messiness of medication management.
We commenced this study during the immediate post pandemic period, which provided an additional context to our work. Difficulties in being present with clinical teams and shadowing activities in the early months impeded rapport building to encourage recruitment and new ways to achieve this had to be found. Restrictions, such as too many people on the ward round, not enough staff today as people are off with Covid, limitations on informal gatherings over a coffee or lunch break, lack of family at patients’ bedsides due to visitor restrictions, and the social distancing and mask wearing were all challenges to the ease of casual presence, participant recruitment and perhaps symbolic of a shift in explicitness of the outsider-role.
Meanwhile, I, Sarah, continue to occupy an insider-outsider role, working in the research space as a clinician and bringing these insights to research meetings of both progress and early analysis but not directly collecting data from the field. This is a learning process for us both as out of necessity I have personally collected the data in most of my previous research. The bringing together of our different but complementary traits, skills and academic experiences in real time during data collection is adding to the richness of our analysis. To capitalise on our different roles in the research space and reflexively synthesise our analytic efforts into a shared interpretation of the data we are recording our discussions, undertaking joint data analysis concurrent to ongoing data collection and drawing on the wider research team, as well as ‘critical friends’ with subject or methods expertise to support sensitisation and critical reflection.
The work of in-between spaces – that is, what happens, or not in-between activities, people and places – can be seen to be as important for us as for our participants, emphasising the need to attend explicitly to these, both for the rigour of our research, but also to do justice to the complexities experienced by our participants by drawing attention to what is commonly overlooked but is essential work if good symptom control is to be achieved. Exploring the space of each participant, their experiences and interactions within each setting of care, whether hospital, hospice or home (in the community) is uncovering circles of care which extend or overlap with other activities, people and places. These in-between research spaces should fascinate not just us, but anyone who wants to see the work of care improved – these are the spaces where each actor within the system caught their breath between discussions, paused to reflect on their activity or connected with others; these are the spaces where micro-steps and micro-decisions, within the layers and layers of work in each of the crude multiple steps outlined initially, happen. This is where the ethnographic approach will allow us to unpick the complexities of medication management and identify what happens in the real world, what realities are problematic and what solutions might address the underlying factors in these.
So where are we now?
Conceptualising our research space as hospital, hospice or home mirrored the experiences of patients receiving palliative care as they too may move between each of these settings. Patients and carers (outside of times with additional pandemic restrictions) commonly make these moves while professionals remain within one of the three settings creating the need for care transitions of not just geography and physical location but also the people providing care. In the hospital we shared with patients the challenges of connecting with palliative care, which as an advisory service had no specific ward space to occupy or belong, especially as team meetings also occurred remotely as a pandemic legacy. This contrasts with the hospice setting – a self-contained physical entity – where team meetings are undertaken face-to-face and shared physical space means general observations can be made regarding interactions between different members of the hospice community. Of course, observation in people’s own homes was not possible in the same sense, but observation of home visits whilst shadowing community palliative care staff and returning for interviews with patients and carers to hear their stories – as the outsider – were fruitful opportunities to inform our understanding of managing medication in this space.
The more we explore the more we uncover ‘assumptions about assumptions’ in the in-between spaces. People act towards others based on not only their assumptions about others, but also their assumptions about what those others are assuming about them! People are unclear who does what and when, in order to meet patients’ needs for symptom control in settings other than their own. No one has the whole picture. Even in a single setting there was ambiguity, where different teams contributed to different aspects of the process. Few understand in detail what is meant to happen once a decision has been made that a prescribed medication is required. Who decides exactly what should be prescribed? What and who determines access to medication ensuring the patient receives their medication when they need it? Who takes responsibility for administering and adjusting medication according to need? What happens when a medication is no longer required? Who takes responsibility for prescribed medication when moving between care settings? Observing and collecting the empirical details of these steps across the contexts of hospital, hospice and home were the main objectives of our study. We expect that a better understanding of the complexities associated with these experiences, practices, and challenges will indicate new ways of working and direction for system change.
Meanwhile, when undertaking research in the NHS, we need to be sure to reach out to participants beyond any ‘usual suspects’ (permeating boundaries that hinder this) so to avoid the same people being asked to help time and again – we have found it helpful, although only a partial solution, to adopt snowball introductions to extend our reach of participation but we are concerned there may be voices who we are not facilitating to be heard. Identifying opportunities for research reciprocity with staff was an effective method for building engagement and involvement, ensuring additional benefit beyond the existing study. The ethnographic approach has been visible to all those who participated and on more than one occasion, participants have commented that in their previous experience researchers arrive, take what they need, and staff never know the outcomes of their contribution, and so one final circle to close will be to present our findings directly with those who so generously gave their time to support our work.
Yeats, W.B. Scottish Poetry Library. 2022. “He wishes for the cloths of heaven by W.B. Yeats” Accessed October 12, 2022. https://www.scottishpoetrylibrary.org.uk/poem/he-wishes-cloths-heaven/
Kusenbach, Margarethe. 2003. “Street phenomenology: the go-along as ethnographic research tool.” Ethnography 4:455-85. https://doi./10.1177/146613810343007.
Yardley Sarah, Sally-Anne Francis, Bryony Dean Franklin, Margaret Ogden, Anu Kajamaa, Karen Mattick. 2022. “Getting palliative medications right across the contexts of homes, hospitals and hospices: protocol to synthesise scoping review and ethnographic methods in an activity theory analysis.” BMJ Open 2022;12:e061754. https://doi./10.1136/bmjopen-2022-061754.
Sally-Anne is a Research Fellow in the Marie Curie Palliative Care Research Department, UCL
Sarah Yardley is an Associate Professor of Palliative Medicine in the Marie Curie Palliative Care Research Department, UCL