Background

In an emergency in the community, family members, caregivers, colleagues, neighbours or unknown bystanders may be required to summon assistance, direct ambulances, provide first aid, reassure the patient, recall events, provide background information and even act as proxy decision-makers. Individuals involved are likely to perceive emergency events differently [1] and when ambulance personnel respond to an emergency, it can be unclear how those present at the scene fit into the patient’s social network. Whatever that relationship, any event requiring an emergency ambulance response is likely to be salient and stressful for those involved [2].

This century there has been increasing research interest in paramedics’ experiences of working with bystanders and families during emergencies [3, 4]. However, recent reviews highlight the limited research from the perspective of family and bystanders during these events [5, 6]. The provision of patient- and family-centred care is an established approach within healthcare settings that emphasises the importance of working in partnership with patients and families to improve healthcare experiences [7, 8]. Dees [9] notes this requires a mental shift from a focus on what is done to the patient, to a consideration of what can be done for the patient, family and caregivers. Differing cultural, spiritual, or religious beliefs may affect the needs of family members and bystanders, and can be particularly important in crisis or end-of-life contexts where emergency ambulance services respond. For healthcare practitioners to provide effective patient and family-centred care which is culturally-safe [10], these needs must be recognised on an individual basis [11]. However, research shows that emergency medical personnel receive little training or clinical guidance on how to provide culturally safe-care [12, 13]. Accordingly, in order for ambulance personnel to provide patient and family-centred care it is necessary to understand the needs and experiences of families and bystanders who seek emergency ambulance care.

Aim and objectives

The overall aim of this scoping review is to identify and synthesise all published, peer-reviewed research describing family and bystanders’ experiences of emergency ambulance care.

Objectives were to:

  • Describe family and bystander experiences of emergency ambulance

  • Identify what family and bystanders value about emergency ambulance care

  • Understand how patient and family-centred care is applied in the unique emergency ambulance context

  • Identify opportunities for future research

Method

A scoping review method was selected to map heterogenous research describing family and bystander experiences and identify gaps in the literature. The review method was guided by the Joanna Briggs Institute (JBI) guideline for scoping reviews [14], and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) [15]. No formal registration of the scoping review protocol was completed.

Eligibility criteria

Study inclusion criteria focused on studies that reported the experience of family and bystanders in out-of-hospital incidents where emergency ambulance services respond. Anticipating a relatively small amount of published research in this area, all studies describing family or bystander experiences of emergency ambulance care associated with medical events were eligible. Peer-reviewed full-length articles of all research designs including reviews were included to reflect the broad nature of the research question. As most research specific to the emergency ambulance context has been undertaken in the past 50 years [16, 17], no specific date limits were applied. Non-empirical articles such as commentary pieces and articles not available in English were excluded.

Information sources & search strategy

Developing a robust search strategy in this area was a complex undertaking due to established challenges with indexing of emergency ambulance care [18] and qualitative literature [19]. Searching of literature consisted of two stages. In stage one (conducted in April 2022), a preliminary literature search of MEDLINE and Cumulative Index to Nursing and Allied Health Literature (CINAHL) was completed by authors ES and NA to trial and develop a comprehensive search strategy. Studies found in search one were reviewed by the research team and a subject librarian to identify additional search terms and create a comprehensive search strategy for search two. Search two (conducted in May 2022) applied search terms (see Table 1) using Boolean search operators to the following databases: Medline; CINAHL; Scopus; and PsycINFO. A search of ProQuest Dissertations & Theses database was also undertaken in the hope this could help us to identify resulting peer-reviewed publications.

Table 1 Key search terms
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Data extraction

All search results were exported into Endnote 20 [20] for removal of duplicates and eligibility screening. Initial title and abstract screening was undertaken by author ES. Where discrepancies arose, these were resolved through discussion with other members of the authorship team. The full text of remaining studies were then screened independently against eligibility criteria by authors ES and NA. Electronic database searching was supplemented through manual searching of the reference lists of included studies. No formal critical appraisal of study methodologies was undertaken as the researchers included all studies meeting eligibility criteria in this review to recognise the heterogenous nature of studies and small quantity of literature found in search.

Data synthesis

Studies were interrogated for findings relevant to the review objectives and these extracted results were compiled in Microsoft Word and uploaded to NVivo [21] where analysis of data was undertaken following the three-stage process of thematic synthesis as outlined in Table 2 [22]. Quantitative findings were largely descriptive in nature and these findings were converted to or included within descriptive themes. Coding and initial descriptive thematic development was primarily undertaken by ES and NA, with remaining authors involved in development and refinement of analytical themes.

Table 2 Thematic synthesis
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Results

Selection of sources of evidence

As shown in Fig. 1 database searches and screening resulted in 25 articles selected for inclusion in this scoping review. All included article reference lists were hand-searched for additional studies resulting in the inclusion of a further 10 studies, bringing the included studies total to 35. Studies are summarised in Table 3.

Fig. 1
figure 1

Prisma Flow Diagram. From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. https://doi.org/10.1136/bmj.n71

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Table 3 Included articles matrix
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Study characteristics

Of the 35 included articles, 21 utilised a qualitive research design [25, 26, 31, 34, 35, 37,38,39,40,41, 43,44,45,46,47, 49, 51,52,53,54,55]; Two used quantitative design [32] (including one randomised control trial)[36]; two were review papers (one systematic integrative review[6], one scoping review)[5]; and 10 were mixed-methods [23, 24, 27,28,29,30, 33, 42, 48, 50]. The predominate population group of the included studies was family members with 18 studies solely focused on family perspectives [26, 29, 31,32,33, 35, 37,38,39, 42, 47,48,49, 51,52,53,54,55]. Some studies included family participants alongside other perspectives including patients [28] and emergency ambulance personnel [27, 36, 44]. Seven studies were classified as having a diverse participant population consisting of three or more different participant groups [5, 6, 30, 34, 45, 46, 50]. Perspectives covered across these studies were: family members, ambulance personnel, emergency services, bystanders, patients, primary health-care professionals, emergency department healthcare professionals, and health researchers. Six studies provided the perspective of lay rescuers/bystanders [23,24,25, 40, 41, 43].

The nature of the emergency event also varied between studies. Seventeen studies focused on out-of-hospital cardiac arrest [OHCA] [23,24,25,26, 28, 30, 32, 33, 36, 39,40,41, 43, 51,52,53,54]. A further five articles included a variety of incidents (including trauma, OHCA, suicide, and other medical emergencies) resulting in out-of-hospital death [5, 31, 42, 44, 48]. Four studies reported on emergencies in the context of palliative care [6, 27, 29, 50]. A single study reported on emergency ambulance care in the event of a suicide [47]. Lastly, eight studies described other medical emergencies where emergency ambulance treatment was given on scene prior to transportation of the patient to a healthcare facility [34, 35, 37, 38, 45, 46, 49, 55].

Studies included covered a date range of 1989 [29] till 2022 [6, 39]. A high proportion of studies came from the Nordic region (n = 17) [23,24,25,26, 34, 35, 37,38,39,40, 43,44,45, 51,52,53, 55]. Other prominent study locations included North America (n = 8)[27, 29,30,31,32,33, 41, 48], Europe (n = 5) [5, 36, 42, 46, 54] and Australia (n = 4)[6, 28, 47, 50]. Only one study [49] took place in a non-westernised location (rural Thailand).

Findings

Thematic Synthesis developed five overarching themes characterizing family and bystander experiences of emergency ambulance care. These are outlined in Table 4 and described below.

Table 4 Key themes
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A world in chaos

Studies exploring the experience of family members [26, 37, 39, 52] and bystanders [25, 41] revealed feelings of chaos and confusion. A sense of panic often affected the ability of family members and bystanders to perform medical aid, with many describing an inability to think or act clearly [37, 41, 43, 45, 51, 53]. Bystanders and family members commonly reported that they did not have the knowledge to provide medical assistance while waiting for an ambulance to arrive [25, 26, 37, 51]. Wanting to help the victim but lacking the knowledge or ability to do so evoked a strong sense of powerlessness in family members and bystanders [37, 45, 51]. Powerlessness is demonstrated in an interview study exploring fathers’ experiences of being present at an unplanned out-of-hospital birth:

“I’ve never felt at such a loss in my entire life (. . .) You’re sort of completely useless because you don’t know anything about this.” [37]

Emergency ambulance arrival reduced family and bystanders’ feelings of chaos, bringing a sense of calm and control [5, 38, 45, 46, 50]. Family members reported a sense of relief to hand over the responsibility of care to paramedics [35, 38, 45, 53, 55]. “…when the ambulance arrived, they took responsibility for the situation and I absolutely wanted them to do that … it felt good…” [38]

Emotional extremes

Throughout the event, bystanders and family members report emotional extremes, notably between hope and hopelessness [26] and chaos and calm [45]. Once they realised there was a medical emergency, family and bystander participants reported a sense of dread, and a fear that the person will die or has died [26, 28, 35, 39, 49, 54] Many family members and bystanders commenced basic life support in the hope that the victim could be saved [25, 41, 53]

“I got it into my head that I would make him come back, I had that belief. I thought, I almost thought that I would make him come back.” [25]

However, hopelessness grew amongst family and bystanders when they could not see any response to basic life support actions [25, 45]. This generated a sense of confusion among rescuers as to why their actions were unsuccessful and, in cases where a death occurred, caused a sense of guilt that their poor first aid may have affected the outcome [25, 26, 40, 41].

In the context of a life-threating emergency, calling for help from emergency ambulance services invoked a sense of hope that the victim could be saved [51]. Hearing approaching sirens in the distance or seeing ambulance personnel arrive on scene gave family and bystanders reassurance [45, 46, 53] Bystanders and families continued to hope that a ‘miracle could happen’ while ambulance personnel provided resuscitation to victims of cardiac arrests [26, 45]. However, as time progressed without the victim responding hope diminished and families were confronted with the possibility that bereavement may occur [26, 45, 53, 54].

“because it was already 10 minutes that they’d been trying to resuscitate him, from when they arrived, at the end of 10 or 15 minutes, I asked if the heartbeat had resumed. They said no. It’s then that I started to understand that .. . well, that it was over!” [54]

All hope on scene is lost when resuscitation efforts are terminated and death is confirmed [26]. In the case of transportation to a hospital, the pendulum of hope and hopelessness continues [26, 45].

Communication is key

Communication was highlighted by family and bystanders to be a crucial factor in determining the overall experience with ambulance personnel [6, 44, 46, 54]. Clear communication with ambulance personnel made families feel informed and involved during emergencies [27, 54] The most frequent complaint regarding communication was a lack of information. Family were critical of poor communication from ambulance personnel, particularly in instances where there were several responders to the event. This was poignantly illustrated by a bereaved parent, who recalled “I think there were seven persons in our house, but no one told me exactly what they were doing to our child.”[44]. Families and bystanders often reported waiting for long periods for information [42, 53, 54]. Participants in several studies noted feeling frustrated that they couldn’t make sense of emergency personnel actions [38, 42, 44, 46, 54]. Excessive use of medical jargon left family members feeling excluded [38]. A key point of communication failure occurred when patients were transported to hospital. Watching the ambulance drive away with their loved ones was a time where family members expressed loneliness and helplessness [39, 44, 55], as demonstrated in this quote from a Swedish interview study of significant others experiences with ambulance care:

“But I felt a little worried, because they put him on the stretcher and rolled him out, and then I had to ask; – What are you doing? Where is he going? We will take him to the ambulance and check the ECG, they said. Is he OK? … What shall I do? Shall I follow? You may decide for yourself, you can do whatever you want, they said. … But what shall I do? Shall I come back out? It was raining. … I knew was in good hands, but it was then I started to think: God, what is happening?” [55]

When a death occurred, family members and bystanders report clearly remembering both comforting communication that conveyed kindness and compassion [5, 44, 47], and communication which lacked empathy or felt incentive [5, 47].

In the event of a death family were grateful when emergency services personnel took time post-resuscitation termination to stay on scene and provide psychological support [33, 48]. Helpful actions included notifying extended family [47], staying with family after the death until support had arrived [27, 47, 52], assisting with cares of the deceased [44, 50] as well as taking the time to talk with the family and answer any questions that they might have [33, 45, 48].

Family as partners during resuscitation

While experiencing individualised care is an essential component of patient and family-centered care, no studies described how individual differences such as ethnicity, culture, spirituality, or religion affected the experience of family members or bystanders. Studies in the context of a cardiac arrest highlighted that families wanted the option to be present during resuscitation [36, 53, 54]. This was because some had started resuscitation themselves, wanted to support the patient (both physically and spiritually, and believed they would be helpful due to a knowledge of the patient’s medical history [54].

Common barriers family experienced to being present during resuscitation were: not being invited by ambulance personnel to be present [52, 53] or being asked to leave [44, 53]; a lack of room on scene [53]; concern that they might interfere with resuscitation [42]; and being afraid of what they might witness [54]. Several studies in this scoping review report on negative outcomes experienced by family who were excluded from resuscitation efforts [36, 42, 44, 54]. A large, randomised controlled trial concluded that family members who did not witness CPR were more likely to experience post-traumatic stress disorder symptoms 90 days post event [36].

Another important factor raised by families was that witnessing resuscitation efforts increased acceptance of outcome in the event of death [52,53,54]. In many of these instances, family reflected on the value of seeing the patient as deceased and witnessing ambulance personnel attempt everything possible to save the victim. This is demonstrated in the following extract from a randomised controlled trial where family members were given the option to witness out-of-hospital resuscitation efforts:

“Having been a witness makes it possible to start to process the loss: ‘And I think that it's important, it's part of the work of grieving also, to see that everything was tried and to truly see it oneself, I think that's very important.” [54]

Conversely, when family did not witness resuscitation efforts, they were left with questions: “suddenly he passed away. But what happened the last 30 min? Even today, we don’t know exactly. That is still a gap in my memory that I need to fill in” [53].

In the cardiac arrest context, families seemed accepting of termination of resuscitation on scene [32, 33, 48]. Some studies reported that family realised resuscitation efforts were not going to work earlier than the termination of resuscitation, and sometimes felt interventions went on for too long highlighting a lack of shared decision making between emergency ambulance personnel and families [26, 32, 48, 54].

‘She [the ambulance nurse] was going on and on, and it was all lines [on the electrocardiogram monitor].’ So I thought, ‘Why do they carry on?’ That was my thought. ‘Why do they carry on for so long?’ I thought it would be better that they just pronounced [him dead].” [26]

In the event of a death on scene, family members described that spending time with their loved was an important activity for psychological healing [42, 48, 52]. Viewing the deceased on scene gave family members time to say farewells, and supported family acceptance of the outcome [52]. One study highlighted that family members needed to be supported by ambulance personnel to view the deceased, as this was an emotional time for family [42].

Post-event support: Fear of being left alone without answers

Participants in a number of studies reflected on the lack of psychological and practical support available to bystanders after emergency personnel depart the scene. Few studies reported formal debriefing or follow-up, so bystanders and family members frequently turned to friends and family for support [23, 24, 40, 43]. While support from friends and family was identified as important in psychological healing, many participants wished to speak to a healthcare professional about the event [24, 37, 40, 52]. Many family members and bystanders report that debriefing with healthcare professionals in instances where a death occurred, was important as it provided reassurance that their actions were sufficient [26, 43]. Having to make contact with support agencies was reported as a barrier by families with survivors stating that they found it difficult to reach out for help themselves [39, 43, 47].

Those present at the scene who were considered ‘bystanders’ rather than ‘family’ were less likely to receive any follow-up or information regarding the outcome of the event, usually due to privacy concerns [24, 40, 43]. Not knowing the outcome of the event was a significant source of distress for bystanders resulting in feelings of anger, worry and even guilt that they may not have done enough.

“‘I wondered about the outcome. I looked in the newspaper. I checked to see if the flag was flying at half-mast. Did we manage this, or did we not?” [40]

Conversely, learning about the outcome of the event—whether successful or not was strongly associated with a sense of closure [40, 41].

“After hearing what happened, I finally felt at peace and I went home and I had a good night’s sleep for the first time in days and I just felt better. It’s a very sad situation, but I realize that I couldn’t have done anything different … I’ve got the answers. I’ve got the information I needed. I’ve had the rest, now it’s time to move forward.” [41]

While participants in several studies reported emergency services stayed on scene for some time following termination of resuscitation [27, 47, 52] many still felt alone once ambulance personnel left [42, 44]. In the context of a death, family members felt in need of practical guidance [42, 53]. and some noted they were poorly informed when police and coronal investigations were required [29, 52].

Discussion

This scoping review is the first to present a synthesis of research exploring family and bystander experiences of emergency ambulance care. We have identified five key themes which influence family and bystander experience of emergency events: a world in chaos; emotional extremes; communication is key; family as partners during resuscitation; and post-event support fear of being left alone without answers. Participants in all included studies experienced emotional extremes when witnessing an emergency. Communication with ambulance personnel was incredibly important in influencing the overall experience of family and bystanders. Where ambulance personnel provided effective communication, family and bystanders felt and informed and included. However, where communication was reported to be poor, family felt confused and isolated. Effective communication is well-established as a vital component of patient and family-centred care [56].

A key finding from this review was that those present at the scene of an emergency sometimes feel they are excluded and treated as unwanted or passive witnesses. Family and bystanders really valued ambulance personnel actions which acknowledged and engaged them and supported their presence and understanding. Emergency ambulance personnel have identified a number of barriers to family presence including a focus on medical treatment, concern resuscitation efforts would be compromised, safety on scene, and concern resuscitation would upset family members [5, 57, 58]. However, a recent systematic review highlights the established advantages and limited risks associated with supported family presence during resuscitation [59].

Providing culturally-safe care to family and bystanders is a crucial component of individualising patient and family-centred care [10, 60]. However, in this scoping review, we found that only three studies [36, 49, 54] incorporated any consideration into the varying needs of family/bystanders depending on their cultural or spiritual preferences. In many instances, demographic data which may aid researchers in determining the experiences of family members and bystanders was not collected.

Finally, the role of ambulance personnel does not end when a death occurs, as family and bystanders have demonstrated significant psychological needs during this time. Family valued the time and care given to them and their loved one by ambulance personnel post-resuscitation termination. However, many ambulance personnel feel unprepared to support family and bystanders in the event of a death, and need further access to training/resources to feel confident providing psychological support to the bereaved [61, 62].

Family or bystander?

A challenge when developing this review was clearly defining the population of interest. It was often unclear how those present at the scene of a medical emergency were identified as ‘family member’. Furthermore, the term ‘bystander’ was used to describe participants who were strangers, acquaintances and family members who played a role in responding to the emergency whilst awaiting ambulance arrival. Typically, family member perspectives were sought from ‘next of kin’ based on a westernised heteronormative concept of a nuclear family (parent, spouse, or child). This potentially limits important perspectives of wider extended family and the experiences of significant others who are not direct kin. Future research is needed, which recognises that family structure can vary among different cultural paradigms [63].

Limitations

A wide variety of terms are used to index research set in the prehospital context [64]. Despite researchers implementing a two-step search strategy and consulting with a subject librarian, a further 10 studies were identified through hand searching and reference searching, which potentially indicates that the database search strategy had low sensitivity.

Conclusion

This scoping review has explored the experiences of family members and bystanders in the event of an emergency ambulance response. By incorporating elements of patient and family-centred care into emergency practice, ambulance personnel can have a significant impact on the overall experience of family members and bystanders. In comparison to literature exploring paramedic perspectives there is limited research exploring the experiences of family and bystanders in the pre-hospital setting. Most of the existing research focuses on the contexts of cardiac arrest, but this is only a fraction of emergency ambulance work. Exploration of family and caregiver experiences in other ambulance contexts including chronic disease management, mental health care and non-conveyance situations, is also warranted. There is a distinct lack of literature exploring any family or bystander groups who may have differing ethnic, religious, or cultural backgrounds. More research – developed in consultation with service-users—is needed to identify the cultural and spiritual needs of family and bystanders when emergency ambulance services respond to ensure that care is provided is culturally safe.