Findings

The scoping review identified 53 articles for inclusion. The general characteristics of the articles are presented in table 3 and the contexts of the research highlighting the area of focus are presented in table 4. Most studies were conducted in a single PICU; however, some were conducted in both PICU and Neonatal Intensive Care Unit (NICU) with findings combined under the heading nursing perspective. This was attributed to the homogeneous nursing skill set and acuity in some hospitals within their PICU and NICU. Review of the included literature identified four key themes with these contexts that portray the voice of the nurse in PICU, some articles depicted more than one theme. The next sections will discuss each theme including the rationale for seeking the voice of the nurse and key findings.

Voice of the nurse in the organisation of care in the PICU

The research presenting the voice of the nurse in the organisation of care is centred around the model of family centred care (FCC). This promotes care provision centred around the needs of the family unit aiming to improve communication and minimise disruption to family life as result of hospitalisation.14–16 ,17 The purpose of seeking the voice of the nurse in the context of FCC was attributed to exploring the barriers in implementing FCC particularly focusing on involving families with care delivery and communication with families.15 18 Nurses highlighted that failure to involve families in care provision can result in increased stress for families, thus the need for gaining an understanding of the nursing experience to support better care provision.8 18

From a nursing management perspective, the voice of the nurse described FCC as an ideal model of both parental presence and participation in care, however, in reality, it was not always possible to implement due to its dependence on individual nursing support.18 The delivery of FCC was described as healthcare professionals giving families a plan of care which aims to manage care delivery.18 However, these plans were predominantly medically focused and provided only limited descriptions of nursing care plans, thus limiting the nursing voice. This contradicts the essence of FCC, to work with the family to plan care. While nurses supported FCC, they described barriers and enablers including visiting hours and care planning.15 16 Challenges included families interrupting care with extensive questioning and increased directive involvement for children admitted for prolonged periods. The nurses suggested that these behaviours resulted in a need to split their time between families and the child, particularly when they felt that the child should be a priority.15 González-Gil et al also noted that there was an increased parental desire to include siblings in PICU visitation, despite a lack of protocol to support it.19

Baird et al described the existence of explicit rules in PICU including forbidding eating and drinking at the bedside and implicit rules facilitating ward routine and care priorities, which defined expectations of parental behaviour.14 Nurses identified their role as rule enforcers, monitoring parental behaviour at the bedside.20 As a result, they became pseudogatekeepers, regulating the activity that happens in this environment, such as restricting visitors and enforcing rules. The concept of nurses acting as gatekeepers regulating parental behaviours was identified frequently in the literature but it was not clear where the nurses voice is present in creating these regulations. Park and Oh focused specifically on the partnership between nurses and mothers in PICU; nurses described it as an unequal partnership due to medical knowledge of nursing staff.21 As a result, nurses frequently ‘managed’ parents by limiting information given to reduce anxiety for parents and limiting participation if they felt parental presence impeded clinical care. Similarly, Felipin et al suggested that the process of enabling parental involvement with care is a process of facilitation and negotiation.16 However, this controlled parental involvement in care was not always perceived as negative, as it encouraged parents to engage in care provision when they were reluctant to do so.22 As parents developed skills and knowledge related to their child’s condition, nurses encouraged their increasing participation in care provision.16 This may coincide with a reduction in acuity of care as nurses have more time to support family involvement. However, this facilitation of involvement was limited to the day-to-day care provision as medical teams acted as gatekeepers to involvement in higher-level decisions and information provision.

Voice of the nurse providing care in PICU

This theme portrays the voice of the nurse caring for children with complex needs, caring for children at End-of-life (EOL) and providing clinical care in PICU. The paediatric chronically critically ill (PCCI) patient presents unique challenges in care, particularly for nurses. Multiple studies explored parental views, however, there were few studies capturing the voice of the nurse. Nurse’s perspectives were sought to better understand care delivery in this population. Nurses describe the unique requirements of caring for chronically ill children in PICU, and the adjustment required to create a collaborative response as the parent is perceived as ‘expert’.23 Baird et al explored this further during interviews of nurses and family members on continuity of care; a concept where a set list of nurses cared for the child. Nurses recognised the importance of families in providing continuity; however, they also voiced that delivering this care impacted skill maintenance and their well-being.24

Death and providing care at EOL were identified as part of working in PICU, these can occur suddenly or be expected.25 The terms EOL and palliation were often used interchangeably but within this context focused on care as the child transition to comfort care. Understanding the voice of the nurse was highlighted as a factor in improving care as the clinical team transitions from cure to caring at the EOL.26 Mitchell and Dale identified the lack of recognition of a child’s illness as life-limiting as the biggest barrier to initiating the discussion of palliation.27 ,28 These discussions on palliation facilitate a redirection of care focused on the comfort of the child rather than interventions to prolong life.26 Nurses identified themselves as the health profession who recognised deterioration of children most frequently.27 29 They felt that this early recognition contributed to a ‘good’ or dignified death, resulting in reduced distress for families and staff as families have more time to prepare for death. Nurses suggested that delayed decision-making impacted dignity at EOL, in particular when a ‘wait and see’ approached was taken, however, were not always involved in this process.30 Bloomer et al found that the nursing role changed when care was redirected towards palliation, nurses increased their focus on the family and created opportunities for them to be with their child.31 Nurses frequently valued continuity of care in this context despite not always supporting it.2 32

Overall, there was limited research describing the voice of the nurse in clinical care; however, this may be due to the qualitative focus of the search strategy. The findings predominantly focused on the voice of the nurse in the context of pain and comfort. Nurses described their understanding of pain assessment as incorporating vital and behavioural signs of the child, they used their clinical judgement rather than patient-reported scores to define pain levels.17 33–35 Nurses highlighted that many existing paediatric pain tools, including verbal scales, were not suitable for PICU because of the child’s conscious state despite the recommendation to use them as best practice. In this context, nurses made their decisions regarding pain based on their clinical experience, despite this not being best practice. Closely linked to pain, Mattsson et al explored nursing perspectives of withdrawing from sedation.36 They faced the challenge of balancing patients’ well-being with requirements of the unit to wean the patient from sedation and discharge them from PICU. Craske et al described nursing experience as a key factor in the assessment of withdrawal from sedation, though it was further enhanced by continuity of care.37

In other areas of care delivery, Bower et al sought nurses’ experience of decision-making during medication administration, noting that nurses demonstrated a need to acknowledge interruptions despite the potential impact on their task.38 Two further studies explored views of research interventions noting nursing involvement in research planning impacted their engagement with the projects.39 40 An Australian study explored nursing experiences of suctioning practices in PICU.41 Nurses identified their experience as a contributing factor in making clinical decisions related to suctioning despite limited evidence to support practice.

Voice of the nurse as a healthcare professional

The nursing voice was also present in exploring factors that cause nurses to both stay and leave PICU. Central to these factors is the concept of professional identity for PICU nurses. This was identified as a factor that influenced nurses’ satisfaction with working in PICU and this concept influenced their intent to leave.42 Nurses voiced a negative personal impact of caring for children who are chronically critically ill, compared with a positive impact from caring for children they described as high acuity.42 This drive for obtaining clinical skills to care for high-acuity children was portrayed as a central factor in a PICU nurse’s identity. Foglia et al explored the concept of staff retention among PICU nurses further. Nurses identified the need for a certain level of stress (eustress) in the PICU environment, but many nurses expressed concerns over significant stress when they had insufficient resources to provide ideal standard of care which had a detrimental effect on their own well-being.43 Mahon noted that this contributed to nurses’ likelihood to stay in PICU as they become expert in PICU nursing.44 This coincided with an evolution in communication and knowledge that allowed them to be perceived as experts and thus equalising their relationships with medical staff resulting in increased contribution to discussions.

Burton et al found that nurses felt they were negatively impacted when they felt team and parent barriers affected their ability to provide care that reflects their own personal values.45 This included when the nurse felt the child had a poor quality of life. Gagnon and Kunyk also highlighted that nurses were impacted by their burden of knowledge, the information they have as an insider but unable to share it with families.30 Geoghegan et al described the impact of caring for children who will not recover as an important contributing factor to moral distress in PICU, although they also noted that developing attachment to these children had a positive effect on their well-being.46 Stayer and Lockhart noted that there was increased distress for the nurses if the child had a lifelong illness leading to death, rather than death occurring after a shorter illness.47 Burn-out was also prevalent in PICU nurses, with most nurses experiencing burn-out at some point although it is difficult to self-identify.48 Burn-out was impacted, both positively and negatively, by relationships with staff and patient families, challenging patients and related work opportunities. PICU nurses also suggested that they experience burnout differently to other hospital staff due to their unique role in critical care. Wei et al explored strategies to reduce burnout and distress in medical and nursing staff and noted that finding meaning in work renews the nurse’s sense of purpose and increases resilience.49

Voice of the nurse in communication in PICU

Overall, the literature lacks a clear depiction of the nurse’s voice in communication and in decision-making. It was predominantly evaluated as part of broader research exploring communication in PICU, most frequently at EOL. Communication with families and medical staff presented in two domains: in the formal family meeting and informal discussions at the bedside. The role of the nurse in communication was portrayed as an ‘in-between’ role between families and medical teams.29 Though, Michelson et al suggested that the nurses primarily identify their role as that of family supporter and advocate, not as communicator.50 The concept of gatekeeping was evident in communication with families.22 While nurses felt that families were kept well informed, they also felt that there was a limit on the information families needed to know. By controlling this information, they hoped to reduce stress and burden on the parents. Nurses described their role in informing families as reiterating the primary information given by medical teams. Other literature suggests that nurses often introduced ‘snippets’ of information to allow parents time to process, which suggests the nurses employ tactics to increase parental involvement in communication.51 Within the formal family meeting format, nurses’ identified their role to support efficient communication, to advocate and provide emotional support for families, however, they were frequently absent from meetings and even when present were predominantly silent.52 53 Similarly at EOL, research highlighted the need for nursing presence at these family meetings during palliative and EOL care discussions to support continuity of care at the bedside.26 Nurses described their role as advantageous in providing this care as they know the child better than other health professionals and can advocate for the child when enabled to do so. This role of advocate, family supporter and providing comfort also existed when preparing a child for organ donation.54 However, competing clinical demands do not always allow the nurse to be present at the meetings.

While many studies suggested that shared decision-making occurred, there was a significant variation in the nurses’ participation in this process impacted by many factors including context and patient. Carnevale et al explored decision-making to sustain life, noting that physicians felt that nurses should not be responsible for making decisions related to the possibility of death.55 Similarly, Kahveci et al described physicians as the primary decision-maker, making decisions on treatment and then informing families of their decisions rather than a shared decision-making process.56 Nurses acknowledged their role in the team particularly their relationship with families; however, they felt it was not their place to make decisions.56 Despite this nurses suggested that while they felt they did not have a responsibility in decision-making, they had a responsibility in care delivery.29 Nurses raised concerns that they struggled to deliver this care when they felt that the care was too invasive and their views on this were not valued. Nurses suggested that they could offer a significant contribution to discussions as they know the family best but felt they are typically excluded from the discussion or that their opinions were not considered, and consequently felt their contribution was undervalued.55 Nurses believed that their input can lead to greater consistency in decision-making and ensure the child and families ‘best interests’ are considered.55

The literature also identified the silence of the nurse at key points of care. This has the potential to impact both optimal care delivery and the well-being of the nurses. Silence was directly identified at multiple points of care both through the absence of the nurse and even when present their reluctance to voice concerns. In family meetings, nurses described being uncomfortable speaking and feeling they needed permission to speak.29 52 On the scant occasions that the nurse’s voice was present during family meetings, they used their expert knowledge to support children and families, but frequently chose to provide care over attending meetings, limiting their ability to be heard in that context. This was highlighted by the nurses’ perceived inability to advocate and support families due to their absence in meetings due to the competing demands at the bedside.29 57