Introduction
It is estimated that 16 out of every 10,000 children and adolescents aged under 19 suffer from life-threatening illnesses and get palliative care services (Cochrane et al., Reference Cochrane, Liyanage and Nantambi2007). Although innumerable studies have focused on the prevention and cure of childhood diseases, limited attention has been devoted to end-of-life (EOL) issues for young patients. Nurses have integral roles in the relief of suffering for children and their families. However, they spend the most time with patients and their families, and they may know little about the principles and skills of pediatric EOL care (Gallagher et al., Reference Gallagher, Cass and Black2012; Peng et al., Reference Peng, Chen and Huang2013).
The importance of palliative care education for health care providers has been recognized worldwide. Nursing education for EOL care is essential, because nurses assume the role of patients' advocate and have more contact with patients and their families as compared to other health professionals. As a result, nurses' knowledge, attitudes, and skills are the keys to improve health care outcomes in this field to help patients and families to achieve a higher quality of life (Brooten and Youngblut, Reference Brooten and Youngblut2006). As Virginia Henderson described (Reference Henderson1964):
The unique function of the nurse is to assist the individual, sick or well, in the performance of those activities contributing to health or its recovery (or to a peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge. And to do this in such a way as to help him gain independence as rapidly as possible. [p. 63].
Pediatric palliative patients are cared for not only on palliative specialized units but also at home or non-specialized hospital wards as well as nursing homes. Therefore, it is not only specialized nurses who need contact with the palliative patients but also student nurses and novice nurses have to be able to provide adequate care to them (De Vlieger et al., Reference De Vlieger, Gorchs and Larkin2004; Johnston and Smith, Reference Johnston and Smith2006). Palliative care is an essential theme in nursing, and its skills are important for both nurses and nursing students at all levels. Patients with life-limiting conditions have a special need for appropriate compassionate support from nurses in addition to maintaining the best possible quality of life during the palliative phase (Johnston and Smith, Reference Johnston and Smith2006). Lack of adequate specialized palliative care training or access for training pediatric and neonatal nurses, combined with the difficulties experienced by many health care professionals in communication with patients and families, especially discussing bad news and prognoses with children and parents, contributes to low-quality EOL services (Malloy et al., Reference Malloy, Sumner and Virani2007). Thus, this review explores the experiences of nurses working with children with palliative care needs and determines any related educational needs.
Methods
The keywords used for this search are summarized in Table 1. Table 2 presents the inclusion and exclusion criteria specified before starting to search the literature. Only articles published in English were included in this study, which could lead to missing some articles written in other languages. However, as translation is costly and inefficient prior to identifying the utility of a study, and as most medical research worldwide is published in English, only articles written in English are included in this review. The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period 2000–2015 (Table 3). Thematic analysis and synthesis for each study's findings were performed to identify the major themes. Based on Lucas (Lucas et al., Reference Lucas, Baird and Arai2007), prominent or recurrent themes for every individual study was followed by an amalgamation of the findings under major headings.
Table 1. The keywords used in the systematic search
Table 2. Inclusion and exclusion criteria
Table 3. Database search details for the systematic search
Quality assessment
Multiple critical appraisal tools were used because of the multiple research methodologies utilized in the studies found in the literature. The Joanna Briggs Institute (JBI) tool was used for the evaluation of qualitative studies, as it is the most coherent tool in comparison with both Critical Appraisal Skills Program (CASP) and the Evaluation Tool for Qualitative Studies (ETQS) (Hannes et al., Reference Hannes, Lockwood and Pearson2010). Three more critical appraisal tools were used: JBI Critical Appraisal Tool for Systematic Review was used to be consistent with the JBI qualitative tool, and the Critical Appraisal of a Survey used by the Center for Evidence-Based Management (CEBM) and the Evaluative Tool for “Mixed Method Study Designs” created by Prof. Long et al. (Reference Long, Godfrey and Randall2002), School of Health Science, University of Leeds. After the exclusion of an additional study that did not report sufficient information about the methodology used, 20 studies were included in this review. Of these 20 studies, 9 were qualitative, 8 were quantitative, 2 were mixed methods, and 1 was a systematic review.
Results and discussion
A total of 8,289 studies were returned after analyzation. The titles and/or abstracts of all the studies were screened for relevance and studies that did not match the inclusion criteria were excluded. The full-text articles were obtained and reviewed for matching the inclusion criteria, whereas 25 duplicate articles were excluded. In the end, 55 papers were reviewed completely and 20 papers were accepted (Figure 1). The research papers were used to extract and tabulate the required data (Table 4).
Fig. 1. Search process.
Table 4. Data extraction for the studies included in the systematic review
Emotional distress
Thirteen studies revealed that working with children with palliative care needs was emotionally struggling for health care providers, especially when they try to manage the transition of pediatric patients from curative to palliative care (Costello and Trinder-Brook, Reference Costello and Trinder-Brook2000; Papadatou et al., Reference Papadatou, Martinson and Chung2001, Reference Papadatou, Bellali and Papazoglou2002; Yam et al., Reference Yam, Rossiter and Cheung2001; Contro et al., Reference Contro, Larson and Scofield2004; Clarke and Quin, Reference Clarke and Quin2007; Epstein, Reference Epstein2008; Lee and Dupree, Reference Lee and Dupree2008; Amery et al., Reference Amery, Rose and Byarugaba2010; Kain, Reference Kain2011;Cook et al., Reference Cook, Mott and Lawrence2012; Borhani et al., Reference Borhani, Abbaszadeh and Mohsenpour2013; Cooper et al., Reference Cooper, Cuthbertson and Fleming2013). A study conducted by Yam et al. (Reference Yam, Rossiter and Cheung2001) revealed that nurses struggle to diminish the emotional suffering that results from the termination of the relationship with infant and parents after the death of the infant. This is the reason nurses try to make distance emotionally from parents and infants. They try to keep themselves busy with physical care to minimize any social interaction or discussion about the infant's condition with parents (Yam et al., Reference Yam, Rossiter and Cheung2001). The following nurse's response clarified that:
When I knew the baby was going to die and could not recover to come back to see us again as other babies did, it was difficult for me to continue our relationship further. I tried to divert my attention to physical care, such as cleansing and turning the infant. I did not take the initiative to talk to the parents. When the parents cried, I did not know how to handle it. [p. 654]
Papadatou et al. (Reference Papadatou, Martinson and Chung2001) and Li et al. (Reference Li, Chan and Lee2002) stated the impact of grieving reaction by exploring the differences in grief reaction between nurses from two cultures, Greek and Chinese. The results showed that 75% of the Chinese nurses reported conscious suppression of feelings, while Greek nurses expressed their sadness more explicitly, such as crying behaviors, despite reporting strong grief reactions after the death of children among nurses from both cultures (Borhani et al., Reference Borhani, Abbaszadeh and Mohsenpour2013). According to literature, nurses had no training to regard to assess and strengthen their own resources and they were unaware of the supportive tools that could relieve their suffering (Lee and Dupree, Reference Lee and Dupree2008; Amery et al., Reference Amery, Rose and Byarugaba2010). However, Cook et al. (Reference Cook, Mott and Lawrence2012) reported that many nurses used memories to cope with the stressful situations they face. Others use certain words or phrases to describe their experiences to protect the people around them.
A qualitative descriptive research approach was employed by Keenan and Mac Dermott (Reference Keenan and Mac Dermott2016) to identify the experiences of grief by the nurses followed by the death of any child who was under their care. The results showed that limited experience and knowledge tend to make them helpless, whereas the majority of them try their level best to focus on positives after the death of a child in their care. The grief experiences by nurses have not been addressed within the practice setting; therefore, it is necessary to show that nurses respond emotionally to patients' death and experience grief (Khalaf et al., Reference Khalaf, Al-Dweik and Abu-Snieneh2017). The experiences of grief among the nurses about emotional labor and death of the patient (child) are part of their work that affects their personal as well as professional lives (Granek et al., Reference Granek, Bartels and Scheinemann2015).
Another study showed that only 7% of nurses reported avoidance of being involved with patients and their families to protect themselves from emotional suffering. Instead, the majority of them experienced grieving after the death of patients, and they described their responses to loss and grief as being characterized by sadness, depression, disappear, guilt, needing to cry or pray, and withdrawing from daily activities (Papadatou et al., Reference Papadatou, Martinson and Chung2001). A study conducted among Iranian nurses reported that they suppress their emotions as a result of their cultural expectations to conceal their feelings. In addition, they feel compelled to hide their emotions, especially if the child's diagnosis is unknown to their families (Borhani et al., Reference Borhani, Abbaszadeh and Mohsenpour2013). One nurse said:
… He had two big front teeth and he was tall…I took some days off, when I came back, they said he passed away; I couldn't be convinced at all. He was the first patient I really liked. Then suddenly, he was absent at the time of my arrival to the work. Oh my God, I was really sad. I said I wouldn't even cry for this, it might impact my emotion but I wouldn't cry. But I really got sad then. I do not cry in front of others, but I got really sad for him. No! I did not cry, I rarely cry… [p. 3].
Guilt and helplessness feelings are commonly experienced by nurses who work with dying pediatric patients (Costello and Trinder-Brook, Reference Costello and Trinder-Brook2000; Papadatou et al., Reference Papadatou, Martinson and Chung2001, Reference Papadatou, Bellali and Papazoglou2002; Yam et al., Reference Yam, Rossiter and Cheung2001; Davies et al., Reference Davies, Sehring and Partridge2008; Borhani et al., Reference Borhani, Abbaszadeh and Mohsenpour2013). Papadatou et al. (Reference Papadatou, Bellali and Papazoglou2002) found that 57% of nurses and physicians experienced a sense of powerlessness upon the death of a child patient; they felt that they could have done something more to help the child, despite their knowledge that this would not have been effective. Similarly, Borhani et al. (Reference Borhani, Abbaszadeh and Mohsenpour2013) recruited nurses who participated in the in-depth interviews, who felt that their working efforts are ineffective and they do not believe in the treatment when it results in the death of children. One of the nurses narrated that “No, we don't believe in treatment! We, ourselves, are watching children's death all the time. Ultimately all of them would die anyway” [p. 4].
Some nurses have a feeling of relief from stress after the death of the children, especially if this is happened after a long period of pediatric suffering from disease (Costello and Trinder-Brook, Reference Costello and Trinder-Brook2000). In summary, emotional distress was a major theme in the literature exploring the experiences of nurses working with dying children. Five studies reported the effects of staffing level on the quality of care for dying children and their families (Costello and Trinder-Brook, Reference Costello and Trinder-Brook2000; Papadatou et al., Reference Papadatou, Bellali and Papazoglou2002; Davies et al., Reference Davies, Sehring and Partridge2008; Kain, Reference Kain2011; Chen et al., Reference Chen, Huang and Liu2013). Nurses feel frustrated as they do not find enough time to spend with child patients and their families, because they have too much work in their department. However, other nurses in one of those two studies appreciated ward work as a means to escape from what they considered as a very stressful (bedside) situation.
Providing palliative care through technology
The nurses feel a sense of helplessness and sadness when they feel that they are unable to help terminally ill infants. This feeling may intensify when they are required to perform painful procedures following doctors' orders, while some of them think that other less intrusive treatments could be more suitable to decrease the suffering of infants (Yam et al., Reference Yam, Rossiter and Cheung2001; Lee and Dupree, Reference Lee and Dupree2008; Cooper et al., Reference Cooper, Cuthbertson and Fleming2013). In addition, nurses experienced moral distress because of using prolonged aggressive treatment, especially in the teaching hospitals because they consider it as an experimental hospital. According to one of the nurses;
Some of us feel like its experimental because this is a teaching hospital but sometimes it feels like, ‘let's try this. Oh, today let's try this.’ It feels like we're prolonging the inevitable and when the baby seems like they're suffering, that's when it becomes very difficult. [p. 775]
Chen et al. (Reference Chen, Huang and Liu2013) stated that 90% of nurses agreed that they went beyond their comfort level by using technological life support. Despite the feelings that it will not improve patients' health status, the nurses feel that the initiation of high-tech support was undertaken (Lee and Dupree, Reference Lee and Dupree2008). One nurse stated: “I got paged that they were putting him on ECMO [extra corporeal membrane oxygenation] support, which I knew was going to be the end of his life, and he died shortly thereafter” [p. 988].
Facilitating communication between children and families
The most frequent educational need reported by nurses who work with children with palliative care needs was communication skills with children and their families (Yam et al., Reference Yam, Rossiter and Cheung2001; Engler et al., Reference Engler, Cusson and Brockett2004; Chen et al., Reference Chen, Huang and Liu2013). Nurses faced several challenges with regard to communication with patients or their families, and in many situations, they found themselves being unprepared to act or behave in a proper way. Nurses reported being at a loss for words especially when discussing prognosis issues with dying children and families. One nurse (female, 31 years old) reported that: “When they (children) ask me ‘what's my illness? Will I get better?’ I don't know what to answer. I feel helpless” [p. 348].
Amery et al. (Reference Amery, Rose and Byarugaba2010) conducted a mixed-method study to investigate children's palliative care educational needs for the health professional in Uganda. Using the self-rating survey, log book analysis, and focus group, communication with children was found to be the highest educational need reported by 50 health professionals (including 41 nurses). The participants demonstrated difficulties with regard to informing and explaining relevant information to children, including breaking bad news, and dealing with strong feelings or denial reactions. These difficulties were connected with nurses' fear of receiving difficult questions or negative emotions; “[I recognized] the importance of proper explanation and full information… helping the child to have a full insight and be compliant… and the need to use proper communication skills to assess properly… and obtain trust in each other” [p. 149].
Amery's study did not report cultural factors in disclosing poor prognosis to children. Cultural factors affect how much explanation is usually disclosed to children with palliative care needs. It is important to understand whether or not the cultural norms of disclosing disease information to children could exaggerate the challenges faced by nurses when answering children's difficult questions. Therefore, further studies need to be conducted which explain how cultural beliefs could affect the disclosure of information about the disease to children with palliative care needs in order to address the challenges to communication faced by nurses and their relation with children's awareness of their diagnosis or poor prognosis. The nurses are likely to face difficulties in communicating with children and their families during a long hospital stay. Moreover, the communication gap increases during the crisis period like diagnosis, disease relapse, or terminal disease stage (Citak et al., Reference Citak, Toruner and Gunes2013).
The abilities of health professionals to communicate well decrease when pediatric patients are not given any information about their disease (Papadatou et al., Reference Papadatou, Martinson and Chung2001, Reference Papadatou, Bellali and Papazoglou2002; Citak et al., Reference Citak, Toruner and Gunes2013). Nurses reported that they avoid answering questions that children and families ask as they are well aware of the disease and therapy and they hesitate to provide this information on their behalf. The dominant culture in which palliative care service is provided affects the nurses' fear of answering difficult questions related to poor prognosis. For instance, it is common practice in the Greek culture not to inform children about their diagnosis. Instead, information about poor prognosis and imminent death is communicated by a physician and only to the parents who usually try to adopt a protective approach toward their child (Papadatou et al., Reference Papadatou, Martinson and Chung2001, Reference Papadatou, Bellali and Papazoglou2002). Therefore, Greek nurses face more difficulties when children who have no awareness about their diagnosis try to ask questions about their diseases and prognosis.
Inadequate skills to overcome family conflicts
Nurses desire to acquire additional communication skills, which help them to deal appropriately especially in critical situations, such as informing families of sudden death, transition from curative to palliative care, and discussing “don't resuscitate” status (Citak et al., Reference Citak, Toruner and Gunes2013).
Nurses reported that they had inadequate helping skills, especially with terminally ill, depressed, and desperate patients, particularly because they did not know how to give hope to those patients. They stated that they felt demotivated when children withdrew themselves from communication as they were in a depressed mood and avoided contact with health care providers (Citak et al., Reference Citak, Toruner and Gunes2013). In addition, Yam et al. (Reference Yam, Rossiter and Cheung2001) found that most nurses stated that they had inadequate knowledge and expertise with regard to supporting grieving parents. They felt uncomfortable observing parents suffer and they did not know how to behave. The following response is an example:
Although I have a Bachelor Degree in Nursing, I must admit that my ability in counselling is not good. I tried to comfort the parents, but I found I was just repeating the same words or sentences. I didn't know if I could help the parents in this way. [p. 655]
Two studies included conflict with patients and their families as one communication barrier faced by nurses while working with children with palliative care needs (Citak et al., Reference Citak, Toruner and Gunes2013). According to Citak et al. (Reference Citak, Toruner and Gunes2013), nurses relate their communication difficulties to the negative responses given by some families as a result of the disease of their children, which can be expressed in blaming nurses. Nurses relate that to the exhaustion felt by families, their inability to support their child, their attitudes to the disease, and sometimes their exposure to other parents: “They both do not accept their disease and secretly blame us when they have accepted, as if we are the reason for their disease” [p. 5479].
The second reason for conflict reported by nurses in the previous study was the inability to maintain professional boundaries, as a result of the long period that patients and their families stay in hospital. Consequently, the relationship between nurses and patients' families, particularly children's mothers, tends to shift toward a nonprofessional direction. The following is an example of that:
Professionalism shifts, for example, they stay at the hospital for four months. The mothers get some ideas that we are friends. Sometimes I am shocked by their behaviour; they try to join us, they abuse close relations. We cannot make contact with them if we avoid from behaving in such a way, there is a fine line… [p. 5479]
In the previous study, however, it seems that there is some ambiguity about how the inability to maintain professional boundaries will negatively alter communication between nurses and child patients and their families; in other words, the previous study did not clarify the negative consequences that could result from moving toward social relationship with families, which could require further investigation. Finally, dealing with demanding and manipulating parents is another communication difficulty experienced by Chinese nurses who felt that they were unprepared to deal with such situations (Papadatou et al., Reference Papadatou, Martinson and Chung2001). Providing good quality life to the dying patients is considered as a national priority as it provides guidelines to care for the patients and give them a good death. An important role is played by the nurses in delivering EOL care. Their efforts should be acknowledged on the basis of symptoms of palliation and social context of dying. A study explored the perspectives of qualified nurses towards the EOL education, and the results clarified that preparing nurses is a challenging task for the educators, although EOL care in nurse training is significantly emphasized (Cavaye and Watts, Reference Cavaye and Watts2012). In the life story of an individual, the dying experience is carried forever among the individuals who received care from nurses. The individuals making their career as a nurse need to have proper knowledge about end-of-life nursing education. Moreover, they need to be comfortable with dying and are capable of reflecting their feelings regarding end-of-life care (D'antonio, Reference D'antonio2017).
Conclusion
The results introduced a preliminary understanding of nurses' experiences with regard to working with children with palliative care needs. Several gaps were found in the literature that justifies the need for further studies. One of the major issues found to be in need for further investigation is the role of culture on the grief reaction and the coping mechanism expressed by nurses. In addition, the effect of staffing level and time pressure on the quality of nursing care provided also needs to be investigated to reveal whether time pressure is a real obstacle faced by nurses in providing compassionate care or whether it is a defense mechanism they use to escape from stressful situations. Moreover, nurses' negative attitudes toward using technology and invasive procedures in the EOL period require more explanation in terms of whether or not their attitudes are affected by other factors, such as their skills and abilities to work with these machines, and the extra workloads these machines add. Furthermore, more studies need to be conducted to assess the educational needs (especially the communication skills) for health care professionals working in pediatric palliative care as it is underpresented by literature in comparison with adult palliative care.
Acknowledgments
The author is very thankful to all the associated personnel in any reference that contributed in/for the purpose of this research.
Conflict of interest
The research has no conflict of interest and is not funded through any source.
