Family-centred care is a key component in providing holistic care to children and their families in paediatric nursing; parental presence and participation is encouraged (Hill et al, 2018) and forms an essential part of the Nursing and Midwifery Council (NMC) (2018)Code: it prioritises people and responds to individual needs. Points 2.1 and 2.2 highlight the need for working in partnership with patients and families and respecting their contribution to their child's care. Yet parental presence during the resuscitation of a child remains a controversial issue, largely due to the perceived risk of harm to the parents witnessing the procedure (De Robertis et al, 2017).
Parent-or family-witnessed resuscitation refers to parents and family members who are present during the cardiopulmonary resuscitation (CPR) of their child (Meghani, 2021). Growing evidence supports the implementation of parent-witnessed resuscitation, with greater recognition that it is their right to be present (Vincent and Lederman, 2017). Many nurses agree with witnessed resuscitation and advocate for their patient (Tennyson, 2019); this is especially important in paediatric nursing where children may be unable to use their voice. Although the main arguments against witnessed resuscitation are concerned with ethics and non-maleficence (McLaughlin and Gillespie, 2007), or the family negatively interrupting during the procedure (Drewe, 2017), guidelines from the Resuscitation Council UK (2021) provide valuable information on the ethics of supporting witnessed resuscitation.
Evidence has shown for decades that children benefit from their parents' presence, and also that parents feel the need to comfort their child and be present in all aspects of their child's life (Platt, 1959). Parental presence is paramount in paediatric nursing, and seminal work has led to the development of health professionals' understanding of the effects that separation of a child and parent has on the child's health and development (Bowlby, 1958). Findings from the Platt report (1959) recommended parental visitation and participation to increase the child's welfare in hospital. In addition, parents who were not with their child during resuscitation reported higher levels of distress compared with parents who were present (Maxton, 2008). According to Maxton, the effects of separation on parents can extend beyond the resuscitation process in terms of understanding and coping with the result of the child's resuscitation.
Method
The formulation of a robust question proves essential for a successful literature review (Cronin et al, 2008). Therefore, the population, exposure, and outcome (PEO) tool was used to develop the research question, ‘What are parents’ experiences that have witnessed their child be resuscitated in a hospital setting?’. The PEO tool signifies:
- Population=parents
- Exposure=children being resuscitated
- Outcome=experiences of parents witnessing resuscitation.
Comprehensive searches were conducted, with the final selection including six articles that answered the research question. A summary of the findings from the articles is presented in Table 1. The Critical Appraisal Skills Programme (CASP, 2018) tool was used to generate themes by critically analysing articles and drawing together common meaning within them (Aveyard, 2019). The following three themes emerged: need to be present, communication, and seeing to believe.
Table 1. Summary of studies included in the review
| Article and research findings |
|---|
Stewart, 2019 . Parents' experience during a child's resuscitation: getting through it
|
McAlvin and Carew-Lyons, 2014 . Family presence during resuscitation and invasive procedures in pediatric critical care: a systematic review
|
O'Connell et al, 2017 . Family presence during trauma resuscitation: family members' attitudes, behaviors, and experiences
|
| Article and research findings |
Mark, 2021 . Family presence during paediatric resuscitation and invasive procedures: the parental experience: an integrative review
|
Parra et al, 2018 . Parent experience in the resuscitation room: how do they feel?
|
Ebrahim et al, 2013 . Parental satisfaction, involvement, and presence after pediatric intensive care unit admission
|
Results
Need to be present
Stewart (2019) conducted a qualitative study in a children's hospital in the USA, interviewing 21 legal guardians (mothers, fathers and grandparents) to understand their experiences during the child's resuscitation. Semistructured interviews were conducted by a principal investigator in person or by telephone, 1-12 months following the event. Stewart (2019) discovered that parents felt a need to be present with their child during the resuscitation, despite the sense of chaos, to ensure that their child's individual needs were met; other parents said that they needed to hear what the medical team was saying to ensure that no information was missed.
Semistructured interviews conducted by an experienced interviewer are most appropriate for this type of qualitative study (Ingham-Broomfield, 2014; Barrett and Twycross, 2018). This approach helps to elicit knowledge of participants' lived experiences and perspectives of complex phenomena (Parahoo, 2014; Flood, 2010), and the interviewer will know how to appropriately communicate with participants to ensure the interview stays on track and maximises engagement (Cleary et al, 2014). Guillemin et al (2018) supported the use of an experienced interviewer: they discussed the role of trust between the interviewer and participants, and that this is paramount to successful research, particularly that of a sensitive nature.
In Stewart's (2019) study, data were collected by just one interviewer, so other interviewers may have had different interpretations of participants' responses (Parahoo, 2014). This decreases the validity of the study, as the semistructured interviews may have been less flexible, and parental experiences may not have been explored in sufficient depth (Noble and Smith, 2015). Nevertheless, Stewart's (2019) study had clear findings from rigorous thematic data analysis, presenting sufficient data to increase the study's transparency and credibility. The principal investigator asked participants to clarify their responses and reported a summary of their answers back to them at the end, building trustworthiness in the data and ensuring that their answers accurately represented their experiences. Interviews were recorded, transcribed verbatim, then verified for accuracy.
O'Connell et al (2017) observational mixed methods study has similar results, reporting that parents strongly believed that their presence had fulfilled the need to be with their child. All parents from this study felt it was important to be present, agreeing that being there decreased their child's anxiety, allowed them to comfort their child and also to better understand their condition. The study included 126 parents, who took part in telephone interviews and in-person focus group meetings 3-6 months following their child's trauma resuscitation at a paediatric trauma centre in the USA. The family-present group had a 36-item survey, the non-present family group had a 17-item survey. Researchers used quantitative and qualitative methods to triangulate the data.
However, the sample size for the non-present families was relatively small (n=27) compared with the family-present group (n=99). This unequal representation may have generated unreliable results (Ingham-Broomfield, 2016) and potential bias (Brown et al, 2015) towards the family-present group; their larger sample size could meant that their experiences dominated the qualitative findings. The interviews indicated that non-present families wanted to be with the child during the event, as they believed they could have comforted them, and that it would have been the right thing to do, had it been possible. This correlates with findings from Stewart's (2019) study, in which parents perceived their presence as an obligatory need to fulfil their parental role.
Both O'Connell et al (2017) and Stewart's (2019) studies offer robust findings of parents' need to be present during the resuscitation of their child, highlighting the need to allow parents to choose their level of presence.
The combination of policy implementation, high-quality family-centred care and adherence to the NMC (2018)Code aids positive experiences for parents.
Communication
A quantitative study Parra et al (2018) surveyed 50 parents of children in the resuscitation room of a paediatric hospital in Spain, between September 2016 and August 2017. A total of 15 parents completed surveys in person and 35 over the telephone. The 16-question survey, consisting of 12 closed and four open questions, was given to parents to complete within 72 hours of the event. The findings suggested that parents believed their presence was not only beneficial for the child, but also the healthcare team, because they were able to convey relevant information. However, five parents stated that the medical information they were provided with was inadequate, so improvements are needed in how parents are supported by health professionals and the information they receive.
This research was approved by the hospital research ethics committee and considered informed consent from participants. This is important because research has the potential to cause harm, especially when questioning participants on sensitive topics. Some of the parents were accompanied by members of the healthcare team, but 11 parents were not. This could have led to bias: the study's findings focused on the information that health professionals relayed to the parents, so the parents who were accompanied are likely to have received more adequate information and communication from the team throughout the event. The data may be less valid and reliable, as experiences of unaccompanied parents will differ. In addition, because there were only four open questions in the survey, the results may not have accurately captured the parents' perspectives.
Similar findings were reported in a quantitative study involving 103 parents of 91 critically ill children (aged 1 month to 18 years) urgently admitted to a paediatric intensive care unit (PICU) in Canada (Ebrahim et al, 2013). In this study, parents of children receiving more therapies in the unit reported lower satisfaction levels, and for every additional therapy satisfaction decreased by 7.1%. No significant differences in satisfaction with healthcare providers were found between parents who had been present during resuscitation compared with those who had not. The study suggested that, overall, parents were highly satisfied with their interactions with the healthcare team; nonetheless 17 parents reported wanting to interact more with the team, 9 would have wanted more involvement in decision-making and 6 would have wanted to be present during more of the procedure. This highlights that effective communication is paramount for helping parents to understand their child's condition, allowing them to choose their level of presence and also having all the information necessary to make informed decisions regarding their child's care (Harvey and Pattison, 2012).
However, the findings from the study by Parra et al (2018) are not as robust as those reported in other literature: the survey had only four brief open questions to enable free-text responses and, given that these are rooted in the parents' perspectives and opinions, it did not give participants the opportunity to communicate with the team to explore the issue of being present during the procedure in depth, hence decreasing external validity (Bowling and Ebrahim, 2005; Moule et al, 2017).
The studies reviewed found that a lack of adequate communication appeared to be a shared experience among the parents surveyed. Due to the limitations imposed by the questionnaire used by Ebrahim et al (2013), it would not be appropriate to rely on this study's findings to make recommendations for changes in practice, the study does not provide significant findings by itself to suggest that parents benefit more or less from their presence at the resuscitation of their child.
McAlvin and Carew-Lyons (2014) completed a systematic literature review evaluating parents' experiences when present during their child's resuscitation in critical care. Their search yielded 117 articles, with six articles remaining after screening. Following a thematic analysis, the aggregated findings showed that parents who were present during resuscitation of their child reported that they would do so again, recommending to others that they should do so, stating that they would not change anything about the experience.
According to parents, their presence enabled them to fully comprehend the severity of their child's condition, eliminating any doubts, and they were able to see that everything possible had been done for their child. The aggregated findings reported by McAlvin and Carew-Lyon (2014) revealed that 67% of parents thought that their presence had helped them cope with their child's death. Parents who were able to leave and return during the resuscitation reported that this had helped them to cope with the situation. Parents who were present during the event reported that they did not experience any additional trauma due to having been present. They noted that their focus had remained on their child, not the resuscitation itself.
McAlvin and Carew-Lyons (2014) reviewed the literature published between 1995 and 2012 on CINAHL, Medline, Ovid and PubMed, and their comprehensive search strategy resulted in robust findings. These electronic databases are appropriate for the topic, providing access to nursing, health issues and life sciences articles (Ridley, 2012; Coughlan and Cronin, 2021). A weakness of this review could be seen as the exclusion of non-English articles; setting the inclusion criteria to cover a wider variety of literature may increase transferability of the findings across multiple cultures.
Mark (2021) conducted a high-quality integrative review, selecting 18 papers out of a total 1107 identified via CINAHL, PubMed and reference tracking. The findings correlate with McAlvin and Carew-Lyons (2014), with parents reporting no traumatic memories and stating that they would choose to be present again. A thematic analysis generated in the review by Mark (2021) is the ‘seeing to believe’ theme: parents reported that they wanted to be informed and know everything happening to their child. These findings indicated that parents who had been present were able to see that everything had been done for their child and, in cases where a child died, the process of acceptance of death began during the resuscitation. A strength of Mark's review is the comprehensive quality assessment of the methodology of the studies included: the author [Katarina Mark] analysed articles using a detailed assessment tool, making findings more reliable and transferable (Smith and Noble, 2016). Arguably, a limitation of this review is that two of the 18 articles were based on responses to hypothetical scenarios presented to parents to evaluate how they thought they would react during the resuscitation of their child. Parents may think they can predict how they would respond to a situation, however, during a real-life event anything could change in a child's condition or care and this could influence parental perceptions and affect their experience. Nevertheless, Mark's (2021) review provides an overview of the literature, with findings that can be used to influence recommendations for changes to practice.
In both the Mark (2021) and McAlvin and Carew-Lyons (2014) reviews, non-present parents reported more distress, due to a lack of understanding and feeling they had failed in their role as the child's protector.
Discussion
This review has found strong evidence that parents' experience of being present during their child's resuscitation is beneficial, in that they can see that everything is being done for their child and they can interact with the healthcare team to exchange information. Although the review shows that there are clear benefits in parent-witnessed resuscitation, such a policy is often not adopted in practice due to the focus being on the patient (Jones et al, 2011), and because hospital policies and resuscitation training do not generally cover the issue (Perry, 2009; Curley et al, 2012). Health professionals also perceive barriers to implementing a policy of family presence (Slater, 2019).
The topic of family presence during resuscitation therefore often remains as unwritten guidance or recommendation, rather than a written policy (Madden and Condon, 2007), leaving it to the discretion of the clinician leading the resuscitation (Porter, 2011). The findings highlight the benefits of implementing mandatory hospital policy on parent-witnessed resuscitation: this would introduce clear guidance for all health professionals across a paediatric hospital and would not, as currently, rely on the subjective opinion of the leading clinician as to whether to allow parents to be present or not at their child's resuscitation. Staff also need to be trained to work in challenging environments with parents present – and, where appropriate, be consulted on whether they consider it is appropriate to have parents present. This will ensure that health professionals can deliver the best care possible for young patients in emergency situations.
The introduction of a policy on parental presence during resuscitation of their child will need to coincide with basic life support training, to ensure that staff are equipped with the relevant knowledge and are also given the opportunity to practice simulation scenarios. In the absence of written hospital policies the healthcare team is placed in a difficult position, whereby they must rely on their judgement of each situation. The lack of a hospital policy on family presence during resuscitation will lead to inconsistencies in care and cause interruptions to the emergency care being provided (Gluck, 2014).
Stewart (2019) suggested that parents should be present during resuscitations and allowed to choose their level of presence to meet their individual needs. According to Mark (2021), change is needed in organisational culture and interdisciplinary leadership to facilitate parental presence: this requires robust policies to be put in place, to ensure that all health professionals are provided with consistent guidance. Furthermore, implementing such a hospital policy allows health professionals involved in emergency events to have confidence in their decisions and specialist training leads to more competence in practice (Walker and Gavin, 2019).
It is imperative that all health professionals working in a hospital are provided with information on the policy: what it entails, how to implement it and how it will affect children, families, and their own developing practice. According to the nursing Code (NMC, 2018), health professionals must practise in line with the best available evidence and continually update their knowledge and skills to provide high-quality care.
Raza (2019) explained the value of evaluation change, creating a feedback process to ensure management can support any proposed changes in the long term. Once the policy is in place and implemented by health professionals, who will have been provided with the relevant training, they will be asked to provide feedback on the effectiveness of implementation, how it has affected multidisciplinary teamwork, the resuscitative event and their own competence throughout an event. Feedback is necessary to evaluate how well the change has worked, how it has affected children and families, and to know what remains to be changed (Curtis et al, 2017).
A barrier to any change may be health professionals' own attitudes toward implementation of the policy, or the skills and experience (or lack of) in supporting parents to be present. This can be overcome by ensuring the policy clearly outlines the process and providing health professionals with adequate knowledge and simulation practice. In addition, it is important to have a designated, appropriately trained member of staff to be with parents in the resuscitation room and to liaise and lead on communication between the health professionals and the parents to explain what is happening.
Conclusion
This article has reviewed the primary and secondary literature on the subject of parent-witnessed resuscitation published between 2011 and 2021, to gain a perspective of parents' experiences in a hospital setting. The review has found strong evidence for the benefits of parents witnessing the resuscitation of their child; the themes highlighted include parents' need to be present, the requirement for clear communication from health professionals, and parents' need to see to believe. Parent-witnessed resuscitation is not always adopted in practice, so the implementation of mandatory hospital policies covering such events should be introduced to practice to ensure continuity of high-quality care.
This review has provided insight into parental experiences during a child's resuscitation, highlighted emergent common themes and identified implications for practice.
KEY POINTS
- Parents who were present during the resuscitation of their child reported that they would do so again and would recommend this to other parents, while parents who were not felt more distress
- Parents were able to understand the severity of their child's condition, see that everything was being been done for their child and communicate with the team
- Nurses have an important role in supporting parents and providing them with information about what is taking place, so it is important to provide them with appropriate training
- There is no national policy on allowing parents to be with their child during the procedure, and this is an issue that needs to be addressed to ensure consistency in practice across UK hospitals
CPD reflective questions
- Reflect on the pros and cons of allowing parents to be present during the procedure. Do you think it is beneficial for parents?
- Do you think that parents are provided with sufficient support and information during the procedure?
- Consider whether nurses have the appropriate knowledge and training to support parents during the resuscitation of their child. How could this be improved?
- Does your hospital have a policy or guidance on allowing parents to witness their child's resuscitation? If not, how would the case of parents wishing to do so be addressed?