Study design

The study used a qualitative research method with semi-structured interviews and an interpretative phenomenological framework for analysis.

Recruitment

Recruitment was by self-selection using a purposive-sampling method. A notice advertising the study was posted in the ward offices of a large tertiary children’s hospital in Dublin, Republic of Ireland, and circulated by email.

Inclusion criteria comprised children’s nurses who had worked with seriously ill children for at least five years, and who worked directly with patients and their families during their daily tasks. Nurses who did not have regular contact with patients and their families were excluded. Five children’s nurses consented to take part. The study participants’ details are shown in Table 1.

The semi-structured interviews took between 40 and 80 minutes, were guided by a schedule (Box 1), and were recorded and transcribed for analysis. Interviews were informal and shaped by the lead researcher’s pre-existing knowledge of the subject and by issues raised during the discussions (Bloor and Wood 2006).

Ethical considerations

Full ethical approval was granted by the hospital in which recruitment took place. Participants received detailed written and verbal information about the purpose of the study and confidentiality, as well as having it explained that they could stop their participation at any time. Any identifying material was removed from transcripts and participants were given a pseudonym. Participants provided full written consent to take part in the study.

Data analysis

Interpretative phenomenological analysis (IPA) considers how day-to-day experiences can become significant, resulting in people reflecting on the importance of their experiences and trying to understand them. IPA has an idiographic focus, which means that it aims to offer insight into how people make sense of a given phenomenon within a given context. In the context of analysing data, IPA emphasises the empathic active role of the researcher in exploring, describing, interpreting and situating how participants make sense of their experiences, avoiding predetermined categories (Smith et al 2009). IPA also involves a ‘double hermeneutic’ analysis, in which researchers try to interpret participants’ ‘sense-making’ practice (Smith and Osborn 2003, Smith et al 2009).

In accordance with IPA procedures, each interview transcript in this study was listened to and read multiple times to gain an overall sense of the narration. The interviews were then analysed using the IPA steps outlined by Smith and Osborn (2003). A detailed case-by-case analysis of each transcript with manual transcribing and coding was used to develop an intimate sense of acquaintance with the data (Pringle et al 2011). A review of the themes resulted in convergent and divergent themes, which were placed into relevant clusters. Codes were attributed to each theme for ease in tracing them back to the original transcript. Superordinate themes were selected based on prevalence, and factors such as the depth of passages and how this contributed to the richness of the themes were also considered (Smith et al 2009). Three themes were selected from the final list.

Being emotionally full

Given the ‘life and death’ nature of the work of children’s nurses, one of the notable themes was an overwhelming sense of being emotionally full. Four participants were surprised by how quickly their interview brought their emotions to the surface, emphasising the cathartic effect on emotions or feelings that needed to be expressed. It was as if the participants’ ‘emotional wells’ were just below capacity and simply having someone to listen to their stories was all it took to ‘open the floodgates’ and let the emotion out. For example, the immediacy of the grief apparent in Serena and Clare’s excerpts demonstrated how they had not come to terms with the death of certain children, despite a time lapse of at least two years:

‘You don’t really get closure in all honesty you don’t really. I had a little boy when I first started here, I was very attached to him… I actually went abroad for a year… he’d been here for a good year and a half, and he actually passed away while I was away so that was upsetting [crying now], but like, I can’t really talk about him now’ (Serena).

‘I absolutely loved him, and he died about two years ago and I felt like I had lost a family member. I was devastated. I don’t think that I have ever properly… I mean I was really, really upset… I still cry about it to this day’ (Clare).

Another participant, Alex, reinforced this feeling of alienation, stating:

‘To know what it’s like to be here, to understand the impact it has on you, you nearly have to walk in my shoes and then you’ll understand it’ (Alex).

These excerpts give a sense that, although the participants were objectively aware of having lost a patient, they were not able to conceptualise it subjectively and had not therefore allowed themselves to experience a mourning process. It was as if on some level they had removed the loss of the patient from their consciousness.

Another participant’s extract portrayed further how this type of loss can lead to a weakening of self-regard. Annouska explained how she believed she had failed a family in some way:

‘It just felt like your family… they’ve probably put their hopes on you to make their child well and then you let them… that’s the frustration…ahh, I thought I was over this… I’m not going to cry anymore [crying and sweating profusely]… but I suppose it’s with time, it’s just like if we… I don’t know… just like now I thought that I was over it’ (Annouska).

Alex found it hard to understand why she underwent such traumatic grief experiences after the death of a child she did not feel particularly attached too. She described a harrowing experience in which her unacknowledged grief caught her unawares when a child she had nursed for only a few weeks died:

‘And in all the babies and children that I have looked after, and I don’t know why, and I’ll never know to this day, it wasn’t a child that, you know… it wasn’t a baby I had looked after for a long time… maybe three weeks max [crying]. I did end up doing CPR… I don’t know why I felt I couldn’t sleep afterwards… my hands hurt here from doing the CPR, but they hurt up to about two or three weeks afterwards. I thought I was going into my GP to nearly be medicated… just stop this pain’ (Alex).

These extracts suggest that these unexpected experiences of intense grief were due to the cumulative effect of loss where emotions that have been denied can eventually emerge into the consciousness. The effect of this unconscious holding back of grief can lead to children’s nurses becoming vicariously traumatised (where negative emotions develop from repeated exposure to other people’s trauma) in response to continued exposure to traumatic events.

Navigating the rules of grief

It was evident from listening to the participants that anxiety permeated their day-to-day existence as they attempted to navigate the rules of grief. As Annaouska commented: ‘You cannot stop when someone dies, you know’. However, Serena implied that it was important not to ignore their grief: ‘I think it’s actually worse not to think about it… we deal with death every day.’

In this study, the rules of grief seemed to be imposed by the organisation, either explicitly or implicitly. For example, Clare and Serena emphasised how their organisation’s policies prevented them from contacting parents to find out how they were coping after a child had died. There was a sense that it would be easier for the participants to achieve closure if they could let the parents know they were thinking about them. The participants expressed how mutual comfort could be gained from a ‘togetherness’ in this situation:

‘We’re not meant to contact the parents and that was tough for me because I would have been close enough to his mum… I just wanted to be able to send her a text saying “Look, I’m thinking of you and thinking of him” and we couldn’t do that’ (Clare).

Maria, however, disagreed:

‘I’ve seen families that have got quite attached to nurses, and when the child dies they cannot let go. You’re obviously not going to be rude to them when they come in, but you can’t be encouraging them to come in… some people that do have contact outside and whatever, personally that to me is unhealthy’ (Maria).

Maria’s view conveyed a sense of defensiveness, which enabled her to avoid painful situations and remain detached from her feelings. When discussing the support available to children’s nurses, Maria offered a glimpse of the implicit rules of her organisation on coping, believing that managers would judge her:

‘Maybe it’s just paranoia but you know… if I talk to the manager about it, then that’s going to be a little tick in her box now, and she’s going to say I’m not coping’ (Maria).

This was reinforced by Clare, who went to her line manager for support:

‘Someone’s died and I’m upset about it… I just felt again that I was labelled, and I really regretted going to my line manager about it, yeah. So again, do I have to put on that smile and pretend?’ (Claire).

These extracts demonstrate a disconnect between an organisation’s objective provision of support and empathy, and its understanding of the subjective needs of its nurses. Participants stated how they relied on colleagues’ support instead of the organisation’s processes. Maria stated that: ‘We can rant at each other… and we feel a lot better after it,’ while Clare agreed that: ‘It is about your colleagues supporting each other because they are the only ones that know what you’ve been through.’

Prism of time

Most participants conveyed a sense of not having enough time when they arrived for their study interview, which created an energetic urgency in the room, or a sense of ‘busyness’. This was expressed vividly by Clare who described her anger and frustration:

‘We are expected to be superhuman sometimes and our feelings don’t come into it… work, work, work, there’s an empty bed, fill it. I might have carried a baby down and put them in his parent’s arms and as they drove home with their dead child in their arms, and I’m back up, getting an admission and that’s the reality’ (Clare).

Maria was more matter of fact in her response to a similar situation:

‘The hospital has got so busy… the family could take the child home at two o’clock and you could have a new patient at three o’clock. That I find difficult’ (Maria).

When Maria was asked how she coped with this sort of situation, the language she used – ‘You literally clean up’ – was illuminating because it conjured an image of ‘cleaning away’ her feelings and emotions. Again, this showed how nurses can become task oriented to avoid painful or challenging feelings.

Although most participants recognised the need for support, even when support services were available the nurses were nearly always too busy to use them. Clare stated that ‘any session she’s organised we can never go to because we’re too busy’, while Serena, talking about debriefs, said: ‘I know that they’re there, but it’s not exactly simple to go to them on the ward.’

There was a sense in the participant interviews that busyness was used as an escape from the psychic reality and that nurses were using it to avoid having to confront feelings of grief in debriefing or supervision sessions, for example.

Unresolved grief

Participants’ emotions were very close to the surface during the interviews, offering evidence that the experiences of loss that they described had yet to be fully processed and remained unresolved. Writing originally in 1917, Freud (2001) claimed that individuals can be consciously aware of who they have lost, but are unsure about the meaning behind this loss, which can hinder the grief process. This can be explained further by the phenomenon of ‘disenfranchised grief’, which refers to individuals who have experienced loss but have not been given a ‘right to grieve’ because this emotion is not accepted openly, recognised socially or observed publicly (Doka 2002). The emotion evident in Serena and Clare’s excerpts, where they discussed children who had died at least two years previously, indicated the pain provoked by their attempts to articulate their experiences of loss.

According to Papadatou (2000), when nurses repress the grieving process continually this can affect their ability to function in their roles. It can also lead to a response that is disproportionate to the content and context of a situation (Stuart and Sundeen 1991, Jones 2005). This was demonstrated by the traumatic grief experienced by Alex and Maria following the death of patients to whom they were not particularly attached. Alex’s extract also demonstrated how the effect of cumulative unresolved grief and trauma can lead to vicarious traumatisation, and how this interfered with her feelings and ability to do her job (Rothschild 2000, Sabo 2008, Hernandez et al 2010).

Systems of care

The transcripts demonstrated participants’ anxiety in navigating the grieving process within the boundaries and expectations of their organisation. Organisational systems of care can support or block ‘natural’ methods of care and compassion which, in turn, can influence nurses’ ability to manage their vulnerability (Dartington 2010). Other authors have described explicit and implicit ‘codes of professional conduct’, which resulted in nurses struggling to navigate grief while complying with these rules (Davies et al 1996, Papadatou et al 2002). Papadatou et al (2002), for example showed how healthcare professionals’ grieving processes were affected by how they perceived their role and their contribution to the care of dying children which was, in turn, influenced by the social and cultural context in which care was provided to children with cancer.

Lyth (1988) explained that taking responsibility for the intimate care of unwell and dying patients resonated painfully with nurses’ ‘unconscious primitive anxieties’. Drawing on the work of Melanie Klein (1975), Lyth (1988) described how she saw these infantile-like anxieties mobilised in nurses in emotions such as love, hate and aggression, and suggested that the main psychological mechanism in use was projection. In other words, the nurse projects their own infantile phantasy situation onto the workplace, experiencing the work as a deeply painful mixture of objective reality and phantasy. In addition, Dartington (2010) claimed that while ‘social defences’ such as an organisations’ structures and policies can protect people against such primitive anxieties in the workplace, they must be challenged when they become counterproductive. This concept was demonstrated by Clare and Serena who reported that they were discouraged by their hospital from contacting patients’ families to ask how they were. This contributed to their feelings of anxiety and guilt that they were ‘failing’ the family, and that the organisation was failing them, thereby evoking their primitive anxieties (Lyth 1988).

When organisations do not promote or encourage employees’ capacity to tolerate and work with their ‘felt anxiety’, this can inhibit them from performing their work effectively (Lyth 1988). The outcome is that the system not only fails to eliminate the primitive anxiety, it also creates a secondary anxiety for the individuals concerned.

Busyness

In this study, there was a sense of busyness throughout the interviews and transcripts, which is supported by the literature on how children’s nurses use various methods to avoid the ‘true’ emotions that underlie the work of caring for unwell or dying patients (Morgan 2009, Keene et al 2010, Curcio 2017). Curcio (2017) claimed that nurses could use self-preservation techniques to protect themselves against painful feelings and emotions, which is consistent with other work on caring for seriously ill children. For example, research shows that some nurses avoid or repress their grief and the painful feelings associated with it by protectively keeping themselves busy with clinical responsibilities and practical duties (Davies et al 1996, Morgan 2009, Papadatou et al 2002). Busyness for nurses can also be a way of denying or detaching from feelings of compassion fatigue or burnout (Figley 2015).

In this study, busyness was a consistent phenomenon and the researchers experienced it as an energetic presence during the interviews. Although the participants referred to how a shortage of nurses and changes in patient acuity contributed to their workload and lack of time, it was evident that busyness was also used as a form of defence. This is typical of what Klein (1940) called ‘manic defences’, which describes a tendency, when presented with uncomfortable thoughts or feelings, to deny what is really taking place in one’s internal world, either with a flurry of activity or with opposite feelings of euphoria leading to busyness and a sense of omnipotent control.

Limitations

This original study was conducted at a location in one children’s hospital in Ireland and depended on participants’ retrospective view of their experiences; therefore, it is possible that recall bias affected the findings, and some experiences may not apply to other nurse populations.

Given the sensitive nature of the topic, participants’ may have consciously or unconsciously censored their accounts as a means of self-protection. Using interpretive phenomenological analysis went some way to address these limitations since it prioritises and values researchers’ understanding of participants’ experiences.