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Commentary on the paper by Davies et al (see page 1270)
Each year, out of a child population of 10.5 million in England and Wales, approximately 10 000 need treatment in paediatric intensive care units (PICU).1 Almost half of these children are transported between the referring hospital and their regional PICU by a specialist team; currently, the Department of Health recommends that parents should not routinely travel with their sick child in the ambulance.2 So, should we be allowing parents to accompany their critically ill child during inter-hospital transport—or should they make their own way? In this issue, the PICU team from Guy’s Hospital report their experience of having the child’s parent accompany them during inter-hospital transport.3 An emphatic “yes” comes from the South Thames Acute Retrieval Service (STARS) that covers the south of England: they still “continue to provide the service” and hope that their “results may inform other services that are considering adopting a similar policy”.
In many respects it has been an error to have not considered, before now, the question of parents accompanying their critically ill child. Over 10 years ago the American Academy of Pediatrics stated: “it is sometimes beneficial when transporting the anxious and sick child to have a parent accompany him or her in the transport vehicle”.4 In our defence, we could cite certain hurdles to progress—concerns about accident insurance for passengers, shortage of space in the ambulance, and staff anxiety because of the added burden of supporting relatives during transport.5 The reality, however, is that the culture has evolved to exclude parents—we have streamlined the transport process and it avoids potential parental complications, by not having them there. The report by Davies and colleagues3 reminds us that, like other areas in acute paediatric care, it is time to hear what parents feel and want, and now do something about it.
If we trace the pathway of care from acute presentation to later transfer to the PICU, we already know much about parents. First, in accident and emergency practice there has been growing interest in letting them stay by their child when procedures are performed, or at least giving them the choice about it. For example in the 1980s, Bauchner et al surveyed 253 parents and found that 78% would want to be present should their child need a blood test or insertion of an intravenous catheter.6 In follow up studies, the same authors found, first, that parents chose to be present in 31 of 50 (62%) such procedures,7 and second, as a consequence, they were less anxious and more satisfied with their child’s care.8 More recently, in a survey of 400 parents presented with five emergency department scenarios, Boie et al found that parents exhibited a hierarchy or order in their preference.9 They were less inclined to be present with more invasive procedures, which, in decreasing order, were: venepuncture, 97.5%; suturing a laceration, 94%; lumbar puncture, 86.5%; resuscitation of a conscious child, 80.7%; and resuscitation of an unconscious child, 71.4%. However, irrespective of these preferences, Boie et al found that if a child was likely to die, most parents would want to be present. Second, we know that there is likely to be a conceptual gap between what physicians think is appropriate for parents to see and what parents consider is their choice to decide. In the survey by Boie and colleagues,9 only 6.5% of parents wanted the attending physician to determine their presence by their child. In a similar emergency department study, but this time surveying 645 emergency staff (306 physicians and 339 nurses) on views about six scenarios, Beckman et al found that almost half of the physicians believed that they alone (44%) should decide whether parents should be present.10 This difference in viewpoint—between parents and physicians—is not altogether unexpected given the cultural history of our specialty: there was a time when parents were excluded from many aspects of hospital paediatric care (for example, bedside visiting for inpatients, peri-operative transfer between the ward and the operating theatre, induction of anaesthesia, etc). Now, child and parent centred care is essential to what we practice—that is, good medicine in the context of listening to patients’ and parents’ voices, openness, good communication, and developing a relationship based on trust. In essence, what we should learn from the studies reported by Boie and colleagues9 and Beckman and colleagues10 are the reasons underlying the gap between 6.5% and 44%, in parents and physicians respectively.
Third, in children who are critically ill, transport to a regional PICU is often the next step after presentation to the emergency room.11,12 Patients may well have undergone resuscitation and there could be significant risk of adverse outcome. In 1995, Woodward and Fleegler (from the Transport Services of the Children’s Hospital of Philadelphia) had a unique opportunity to survey two groups of parents: a group who had been allowed to accompany their child in an ambulance because they had made a request to do so even though “this option was not actively encouraged” (n = 46), and a group who did not accompany their child (n = 40).13 Eighty six per cent of these parents felt accompanying their child was important. Prior to transfer, 74% were either worried or very worried about their child’s stability. Only 5% of parents accompanying their child found that doing so made them anxious or very anxious, whereas 56% of those who did not accompany their child felt anxious or very anxious (p < 0.05). Finally, 94% of parents would choose to travel with their child in a future similar circumstance. These findings are not dissimilar to those found in the south of England in 2003. Colville et al surveyed 233 parents, of whom only 13 had been allowed to travel with their child in the ambulance: in total, 70% of these parents commented on the journey they made to the PICU, often travelling alone using their own transport.14 A recurring theme in what the parents had to say was their sense of separation and the distress this journey caused them. Three quotations, relayed by the authors, capture the very essence of what these parents are feeling, and we should not forget this: “the worst journey of our lives”, “the worst part was seeing the ambulance disappearing in the distance”, and “for all I knew she was dying and I wasn’t allowed to be with her”. In this issue, the report by Davies and colleagues3 focuses on logistics, staff perceptions, and adverse events—and that is entirely right given the newness of this service development in the south of England. However, another—albeit less emphasised—key message emerges from this work. The authors’ interpretation of parental feedback (presumably compared with previous experience in the south of England13) was that these parents were less stressed as a consequence of accompanying their child. These audit data need to be followed up with further clinical studies. For example, do parents who travel with their children experience less acute stress disorder? Are they at less risk of post-traumatic stress disorder?
Davies et al tell us that their pilot study—permitting parents to accompany their critically ill child during inter-hospital transfer—was conducted in response to the distress expressed by parents, and now, because of their experience, it has become the established practice of the STARS team.3 There are at least 14 other regional PICU transport services in England and Wales—how should we respond and move on? Should we determine whether there is national consensus regarding involving parents in inter-hospital transport—and only act if there is? The present standards of the United Kingdom Paediatric Intensive Care Society (1996 and 2001)12 do not cover this issue. Rather, they state that it is the referring hospital that is “obligated to provide transport to the Lead Centre (that is, regional PICU) for parents”. Even in the United States, there did not appear to be consensus among paediatric critical care transport team managers in 2001.15 Only 63% of teams allowed parents to accompany their child in the ambulance, but the authors from Philadelphia (see also Woodward and Fleegler13) took the view that “awareness of this issue may help to establish discussion and guidelines regarding the role of parents”. In other words, lack of unanimity should not detract from this potential development—it merely indicates the extent of change in practice that is needed if we are to respond to what parents need. There is now a literature showing that the most helpful coping strategy for parents of PICU patients is to allow them to stay with their child and to empower them.16–18 Inter-hospital transport should be no different. However, if we cannot extrapolate the conclusion of the STARS service to our own regional practices, then we should at least look at alternative ways of better supporting parents during the time it takes for them to travel from the accident and emergency department to the regional PICU.
Commentary on the paper by Davies et al (see page 1270)
Competing interests: none declared