Navigating and making sense of urgent and emergency care processes and provision

Abstract Background Whilst many health systems offer a range of urgent and emergency care services to deal with the need for unscheduled care, these can be problematic to navigate. Objective To explore how lay people make sense of urgent care provision and processes. Design Qualitative study, incorporating citizen panels and longitudinal semi‐structured qualitative interviews. Setting and Participants Two citizens’ panels, comprising purposively selected public populations—a group of regular users and a group of potentially marginalized users of urgent and emergency care. Semi‐structured interviews were conducted with 100 people, purposively sampled to include those over 75, aged 18‐26 years, and from East/Central Europe. A sub‐sample of 41 people received a second interview at +6‐12 months. Framework analysis was thematic and comparative, moving through coding to narrative and interpretive summaries. Findings and Discussion Participants narratives illuminated considerable uncertainty and confusion regarding urgent and emergency care provision which in part could be traced to the contingent nature of urgent and emergency care need. Accounts of emergency care provision were underpinned by strong moral positioning of appropriate help‐seeking, demarcating legitimate service use that echoed policy rhetoric, but did not necessarily translate into individual behaviour. People struggled to make sense of urgent care provision making navigating “appropriate” use problematic. Conclusions The focus on help‐seeking behaviour, rather than sense‐making, makes it difficult to move beyond the polarization of “appropriate” and “inappropriate” service use. A deeper analysis of sense‐making might shift the focus of attention and allow us to intervene to reshape understandings before this point.

Navigating (identifying and connecting with the relevant options) between urgent and emergency health care and other services may be confusing and complex for individuals seeking, or considering, helpseeking. People are required, often at the point when sick or injured, to distinguish between health-care needs that are categorized as "routine," "urgent," "emergency," "primary" or "acute" and are confronted by an array of possible services, to which access may vary according to time of day, and day of week. There is some suggestion that a key driver of ED attendance is lack of access to primary care services 16,17 which may be a factor driving urgent care demand to EDs. However, a recent qualitative study exploring why patients choose to attend the ED suggested experiential knowledge of previous service use might be more relevant in decision making 18 suggesting that people are not merely applying categories when making decisions to seek help.
The concept of sense-making can be enrolled to inform thinking around health-related help seeking. Prior to making decisions people draw on existing representations of their knowledge and beliefs around illness and about the health-care provision available to them and integrate these with their current circumstances to make sense of the situation. This might be done alone or through contact with their wider social network. Weick 19 suggests that sense-making can be understood as the manner by which people enact their environment. It is a process requiring interaction with people and objects as a means of articulating the unknown in an attempt to make sense of a complex set of circumstances by turning these, "into a situation that is comprehended explicitly in words and serves as a springboard to action." 19 Sense-making thus can be seen variably as a cognitive information processing activity 20 and as a social process. 21 This paper presents a detailed exploration of the lay experiences, perceptions and sense-making surrounding the boundaries and utilization of urgent and emergency care. It begins with a brief overview of UK policy and relevant research to illuminate some of the core definitions surrounding urgent and emergency health-care services and it is presented as a context for data considered in two citizens' panels exploring lay members' conceptualizations of urgent and emergency care services. These data are augmented by analysis of 141 interviews with lay people exploring in detail their sense-making with regard to urgent care. Together these data help to demarcate a distributive struggle 22 that characterizes the tensions and challenges of help-seeking, "over use," and "inappropriate attendance" that occur when users encounter and think about the use of urgent and emergency health care at the interface with other service provision.

| Defining urgent and emergency NHS care in policy and research literatures
The Urgent and Emergency Care Review 1,4,7 presents a pyramid model of services (Keogh model) which are distinct from one another and provide for varying levels of need (see Figure 1).
In these policy documents, emergency and urgent care needs are defined by reference to their own labels and to each other; urgent is compared to emergency as "not life-threatening," and designated as "serious" versus "more serious" emergency presentations. 1,4,7 Thus, "urgent" conditions may be described as "serious but not life-threatening" 4,23 and urgent care services "for people who feel urgently ill" (p. 37). 24 There are hints of the model of services being based on a hierarchy of need, but no real explanation of how the boundaries between services are operationalized. Few policy documents provide a working definition of urgent or emergency health-care needs. There is a vaguely specified suggestion that the designation of urgent or emergency hinges on the speed with which a person needs to be seen. 24,25 Some policy documents conflate urgent and emergency care services into a single category, labelled as unplanned or unscheduled care 4 thus avoiding the idea of a boundary altogether. 26,27 Often policy makes no reference to a definition at all. 7,25,[28][29][30][31] Implicit in these characterizations is the idea of borders between services, determined by acuity, but it is unclear how these are established. The notion of urgency is contested and it is unclear who has the right to categorize it: it can be determined by service providers, users, or both. 6 However, there is growing recognition that patients are less able to distinguish between services, precisely because of the confusion about terminology and definitions 26 and the policy literature sets up a hierarchical model of urgent and emergency care which lacks specificity and offers little traction for those navigating these services.
The academic literature is similarly unhelpful. Conceptualizations of urgent and emergency care are discussed in terms of appropriateness of service use, particularly in relation to ED and ambulance services. Inappropriate attendance includes cases deemed "low urgency" or "unnecessary," with the suggestion that the patient could have been responded to elsewhere. 32 Differences in professional perceptions of urgency and wide variance in what is considered as appropriate service use is also evident. 33,34 Quan et al 35 found that professional assessment of urgency was based around timeframe and contextual subjectivity, such as whether the patients or their family was upset, rather than clinical features alone. Furthermore, definitions of urgency varied between physicians and nurses, with nurses more likely to take in the wider context of the patient experience. Koziol-McLain et al 36 suggest that the term "severity" is embedded in the "medical framework of physiologic dysfunction or disease" and they define emergency care as "those health services provided to evaluate and treat medical conditions of recent onset and severity" (p. 561). From this perspective, patients are seen to access care in response to bio-medical crisis exclusively, with psychological and social factors not requiring consideration. In the context of a literature depicting a lack of clarity about borders and positionality of services, it seems sensible to explore how people make sense of urgent care provision and processes, and how this impacts on their navigation of services.

| ME THODS
To explore service users sense-making about urgent care help seeking, we conducted citizens' panels and interviews. Citizens' panels are a method used to assess public preferences and opinions. They permit participants to "engage with evidence, deliberate and deliver recommendations on a range of complex topics." 37  Two general public panels were conducted which included people known to be more regular users of urgent and emergency care (such as parents of young children, older patients), and sought representation from different ethnic groups and geographical areas.
We included adults aged 18 and over, and the oldest participant was 78 years of age. One panel consisted of people drawn from the East European community, chosen because this population is known to be growing in size in the chosen setting, and because more recent migrants may lack familiarity and experience with local services as a basis for sense-making and may be a marginalized group. 38 Participants were recruited via local community groups and networks (eg, via community centres), public advertising (posters, press and local radio) and local service providers. In total 24 participants took part in the citizens' panels with 12 in each panel. Recruitment to interviews took place between September 2016 and July 2017. We had anticipated that participants would be recruited via NHS urgent and emergency care services however this proved very difficult (only 13 participants were recruited in this way). We therefore widened our strategy and recruited a further 87 participants from the general population using community-based advertising and local media advertising to meet sample targets.
Interested participants were either sent an information pack by e-mail or a research nurse handed them (at the ED or urgent care centre) or posted an information pack (NHS 111 and community sample). To encourage greater uptake of interviews, we offered a £15 gift voucher (per interview) as an incentive to take part. We conducted 93 first interviews with 100 people (some in pairs, usually older couples where a spouse or partner was present in the home when the interview took place). All participants were invited to take part in second interviews. In total, 41 participants were available and agreed in take part in a second interview. Interviews were conducted by two female members of the research team (GM and JT) and lasted between 35-90 min. The interviews were digitally recorded and transcribed as anonymized documents for analysis by the wider team.

| Analysis
Data generated included written notes, audio recordings of group discussions which were later transcribed, and written material pro- European groups). Analyses were informed by conceptual ideas on sense-making and to facilitate analysis and discussion amongst the team, grids and matrices were used to chart and compare the data.
Emerging themes were shared with the wider research team comprising the fieldworkers, researchers and clinicians and discussed with advisors including patient representatives to check credibility and refine thinking.

| FIND ING S AND D ISCUSS I ON
Sense-making can be understood as activity by actors in an or-  In contrast to intentions of current policy many services were perceived as equivalent rather than hierarchical or distinct, and, as others researchers have suggested, the distinctions between them were flexible, ambiguous and confusing 26,30 : We had a conversation here, didn't we, about the con- Another interviewee, whose sense-making of the UK system was shaped by understanding of a different system, reported that both "urgent" and "emergency" could apply to emergency services.

| Contingent nature of need
Making sense of the proximate types of care provision for urgent and emergency care was linked to a focus on time-an aspect mentioned in some UK policy. 24,25 "Urgent" need required "being seen there and then," "immediately," "instantly" or "quickly." However, We're a bit more worried about the toddler than anyone else.
(Public panel) In the absence of clearly defined boundaries of urgency, meaning was informed by factors such as existing beliefs, past experiences and understanding of the system in which possible actions are situated.
Sense-making of the urgent and emergency care system and its usage was maintained through the inclusion of "acceptable justifications" that allow for adaptations of the system. 34 This struggle to make sense of the services on offer whilst also acknowledging contingencies and uncertainty surrounding health-care needs underpins the third theme in our analysis-moral positioning.

| Moral positioning in making sense of when and how to use urgent care
Our data illuminated how people judge and position other people and help-seeking behaviours against moral principles entailed in making sense of what urgent and emergency care is for. Whilst service users described their own health service use and those close to them as legitimate, "others" were often characterized as "time wasters" and inappropriate service users. The quote below references a discourse rehearsing a moral position, and hints at contingencies that underpin perceived "illegitimate" help seeking:

| Re-imagined borders of urgent and emergency provision
Panel members were asked to consider the "Keogh model" 1 and to suggest services that should be included, and discuss the confusion about access routes. All noted problems with having A&E/ED at the base of the diagram in a bold colour (red) because it drew attention to this service and seemed to emphasize its importance.
Asked to redraw the diagram to match their own understandings the panels' pictures looked different. Rather than using relational language to describe their revised models (eg, "less urgent than Sense-making of service use was imbued with the process, common in managing health and illness more generally, of establishing oneself as an appropriate candidate for using urgent care by emphasizing control over personal decisions, autonomy and independence, and being stoical in the face of adversity. 46 Thorogood 47

| CON CLUS IONS
The demand for urgent and emergency care services appears to be increasing, especially from particular groups of patients who share characteristics of those purposively chosen in this study. 48,49 Our exploration of peoples' sense-making, experiences and views of the distinctions between urgent and emergency care suggests that boundaries between services are ill-defined creating confusion about the appropriate use of the many services on offer. This may explain peoples' difficulties navigating the use of services in ways officially considered "appropriate" as it makes sense from a service user's perspective to see boundaries with a fluidity not intended by policy. While participants acknowledged that health-care needs were highly contingent, their sense-making included a moral component which tended to be judgemental and polarized between one's self (help seeking is legitimate) and others (help seeking is inappropriate, unless there are special factors to take into account).
Previous research literature and wider policy rhetoric has revolved around or at least made use of this moral positioning, sparking media debates and atrocity stories about inappropriate attendance.
Yet, this continued focus on help-seeking behaviour, rather than that