Summary of Findings
Pediatric health professionals caring for children who die may experience grief at the loss of a patient. This grief may be compounded by repeated exposure to patient death and may be repressed or delayed due to professional responsibilities or expectations. One study indicated that 20% of pediatric critical care nurses experienced high levels of secondary traumatic stress related to patient death.1 Another study found that two-thirds of participants were experiencing high levels of psychological stress when caring for severely ill neonates who die.2
Grief is defined as an “emotional reaction to bereavement, falling within expected norms, given the circumstances and implications of the death, with respect to time course and/or intensity of symptoms”.3(p.6) Grief may be experienced through cognitive disorganization, dysphoria, disrupted health deficits, social and occupational functioning, or social withdrawal and isolation.4 Uncomplicated bereavement may also elicit symptoms of poor appetite, weight loss and insomnia, but may vary culturally in expression and duration.5 Grief is distinguished from major depression by the expected feelings of emptiness and loss that decrease over time, usually with preservation of self-esteem.6 During normal grief processes, there should be gradually reducing symptoms and adjustment to the loss, which, in North American culture, typically last 12 to 18 months.7 Abnormal grief processes have varied titles including anticipatory, complicated, chronic, disenfranchised, absent, delayed, inhibited, distorted, unanticipated or masked grief.7 Abnormal grief may further develop into a diagnosis of prolonged grief disorder or persistent complex bereavement disorder.8
Although this review used the American Academy of Pediatrics9 definition of pediatric patients as persons younger than 21 years of age, most studies did not specify the ages of patients but rather described health professionals as pediatric health professionals or those who cared for infants or children. The healthcare settings included in this review were based on the presence of pediatric health professionals caring for children who ultimately die. The review used the World Health Organization's (WHO's)10 classification of “health professionals” and “health associate professionals” to define health professionals, with the addition of social workers and psychologists who are commonly recognized as allied health professionals within the healthcare environment.
Preliminary searches for existing systematic reviews were conducted in PubMed, CINAHL, PROSPERO, the Joanna Briggs Institute EBP Database and the Cochrane Library. Previous reviews focused on stillbirth,11 perinatal loss,12 adult patient death,13 interventions to address grief14 and new graduate experiences of patient death15 rather than pediatric grief experiences. This review synthesized the grief experiences of health professionals associated with pediatric death in healthcare settings.
What are health professionals’ experiences of grief associated with the death of pediatric patients in acute or community healthcare settings?
This review included studies with pediatric health professionals as participants, including the subspecialty of neonatal health professionals. Many relevant studies did not report patients’ ages. Thus, the identification of participants as pediatric health professionals was accepted as meeting the inclusion criteria. Although the standard definition of a neonatal patient ranges from birth to 28 days,16 health professionals in neonatal units may care for patients for much longer than this age due to increased healthcare needs of some infants. Because of this crossover of care, neonatal health professionals were included as participants. Persons classified as “health professionals” and “health associate professionals” by the WHO were included.10 Although personal care workers, health management personnel and support personnel provide valuable care to pediatric patients, these professions were beyond the scope of this review. The exception to this was social workers and psychologists who, although classified as health management and support personnel by the WHO, are commonly recognized as allied health professionals.
Phenomenon of interest
The phenomenon of interest was the experience of grief associated with pediatric patient death. No limitations were placed on the form of normal or abnormal grief. No limitations were placed on the cause of death except for perinatal death, because interactions would have been primarily focused on parental care during pregnancy.
The context was any acute or community setting where health care for pediatric patients is provided. The context was intentionally broad and inclusive, only limited to the practicing contexts where the included participants and phenomenon of interest could be identified.
Types of studies
This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, qualitative description, action research and feminist research. Qualitative data from mixed methods studies were included if there was sufficient clarity to distinguish the findings from the quantitative results. Studies conducted in any country were considered; however, only studies published in English were included. Studies were searched from database inception to present.
The systematic review was conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence.17,18 It followed the methods established in the a priori protocol19 and was registered with PROSPERO (CRD42018117124).
The search strategy aimed to find both published and unpublished studies. An initial limited search of PubMed and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe article. This informed the development of a search strategy, which was tailored for each information source. A full search strategy for the databases searched is detailed in Appendix I.
Due to the broad nature of the context, specific healthcare settings were not included in search terms to avoid the risk of inadvertently excluding or inappropriately including articles. Instead, the presence of health professionals in these facilities was the key term used in the search strategy. More detailed scrutiny of the healthcare context was undertaken during study selection. The reference lists of all studies selected for critical appraisal were screened for additional studies, but did not result in any additional studies being included.
The databases searched were PubMed (NLM), CINAHL (EBSCOhost), Embase (Elsevier), Scopus (Elsevier) and PsycINFO (Ovid). The search for gray literature included ProQuest Dissertations and Theses.
Following the search, all identified citations were collated and uploaded into EndNote X8.2 (Clarivate Analytics, PA, USA) and duplicates removed through the method discussed by Bramer et al.20 along with additional manual removal. If a study was identified in both a journal article and in a thesis repository, the journal article was included in the review and the thesis was referred to if there was a requirement for additional details about the study methodology or findings. Where this was the case, theses were reviewed at each screening and analysis stage, as eligible. Titles and abstracts were screened by one reviewer for assessment against the inclusion criteria for the review. Language and study type exclusions were performed through title and abstract searching rather than database limits to ensure accuracy.
Studies that potentially met the inclusion criteria were retrieved in full and their details imported into JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia). The full texts of selected studies were retrieved and assessed in detail against the inclusion criteria. Full-text studies that did not meet the inclusion criteria were excluded, and reasons for exclusion are provided in Appendix II.
Assessment of methodological quality
All studies meeting the PICo (participant, phenomenon of interest, context) inclusion criteria were assessed using the JBI Critical Appraisal Checklist for critical and interpretive research.18 Selected studies were critically appraised by two independent reviewers for methodological quality. Following critical appraisal, studies that did not meet the quality threshold were excluded. This threshold was determined based on studies that received “yes” responses to questions 2, 4 and 8 in the checklist. Any disagreements that arose between the reviewers were resolved through discussion. There was no need to involve a third reviewer.
Qualitative data were extracted from papers included in the review using the standardized qualitative data extraction tool18 through JBI SUMARI by the first author. Extracted findings were cross-checked by the remaining two authors. The data extracted included specific details about the populations, context, culture, geographical location, study methods and the phenomena of interest relevant to the review question and specific objectives. The extraction of study findings aligned with the inclusion criteria. Findings that were outside of these inclusion criteria were not extracted.
Qualitative research findings were pooled using JBI SUMARI with the meta-aggregation approach.18 This involved the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings based on similarity in meaning. These categories were then subjected to a synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice.
Assessing confidence in the findings
The final synthesized findings were graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and are presented in a Summary of Findings.21 The Summary of Findings includes the major elements of the review and details how the ConQual score is developed. Each synthesized finding from the review is then presented along with the type of research informing it, dependability score, credibility score, and the overall ConQual score.
The database searching identified 6425 records with an additional five records identified through hand searching. Once duplicates were removed, 3273 records remained. All of these studies were screened for eligibility based on title and abstract, which resulted in 3181 records being excluded. Ninety-two full-text studies were retrieved and screened for eligibility, resulting in 73 articles being excluded. The reasons for exclusion included not meeting one or more of the PICo criteria, not clearly reporting qualitative data, not published in English and the study being reported in another article. A list of articles excluded at full-text review, including reasons for exclusion, is available in Appendix II. One study reported findings with illustrations across two journal articles.22,23 Both articles met the inclusion criteria, and there was no duplication of participant data and illustrations between the articles. Within the context of this review, the articles will be discussed separately; however, when the results are combined, they will be referred to as a single study. For example, there were 18 studies (19 articles) critically appraised for methodological quality. Six studies were excluded after assessment of methodological quality, leaving 12 studies included in the review. Figure 1 presents the search results and study and selection and inclusion process.24
All studies that met the inclusion criteria were assessed for methodological quality with the JBI Critical Appraisal Checklist for critical and interpretive research.18 At this assessment stage, studies were required to meet criteria 2, 4 and 8, thus demonstrating congruence between research methodology and research question, research methodology and data analysis, and representation of the participants and their voices. These criteria were previously used by Salmond et al.25 as the quality inclusion criteria. All assessed studies met the criteria for adequate representation of participants and their voices; however, six studies did not have clear congruence between research methodology and the representation and analysis of data.26-31 Of these six studies, four also did not have clear congruence between the research methodology and the research question.26-28,31 These six studies were excluded from further analysis. Details of excluded studies can be found in Appendix III. For the non-exclusionary criteria, only a small number of studies included statements positioning the research culturally or theoretically,32-34 or clearly articulating a philosophical perspective,32-35 as well as discussing the influence of the researcher on the research, and vice versa.32-34,36,37 Further detail on assessment of methodological quality is available in Table 1.
Characteristics of included studies
The 12 included studies were published between 198733 and 2018.36 Four studies were based in the United States of America,32,33,35,37 three in Brazil,36,38,39 three in Canada,34,40,41 one in Ireland22,23 and another in Portugal.1 Five studies drew participants from children's hospitals,1,32,34,37,40 four from neonatal intensive care units,33,36,38,39 as well as pediatric wards,35 oncology units,41 and a pediatric residential respite center.22,23 The studies had between six1,34,39 and 2540 participants, with four studies having nine participants. All studies focused on nurses as participants with the exception of one that focused on pediatric oncologists.41 All studies had a majority of female participants with the exception of one study1 that used purposive sampling to obtain a gender balance. Further details on characteristics of included studies are available in Appendix IV.
Following principles of meta-aggregation, findings were synthesized into categories and synthesized findings. There were 140 findings extracted from 13 articles, and, of these, five findings were not supported by the data according to the ConQual criteria (Appendix V).21 Due to the intent to develop clinical recommendations from the aggregation of findings, the unsupported findings were excluded from further stages of the review. All other findings were assessed as unequivocal or credible, and were aggregated to develop 18 categories, with between two and 18 findings in each category. These categories were then further synthesized to create three synthesized findings, which illustrate the grief experiences of health professionals when pediatric patients die. Full details of findings and illustrations for each synthesized findings can be found in Appendix VI with links to categories and synthesized findings in Appendix VII.
Synthesized finding 1: Physical, behavioral, psychological or spiritual symptoms
While symptoms can vary between individuals and situations, these are widely reported as impacting to a considerable degree in many participants. Health professionals reported responses to patient deaths that had affected them deeply and for a long duration. Symptoms included sadness, crying, exhaustion, sleep disturbance, withdrawal and cumulative effects of grief experiences. Seven categories contributed to this synthesized finding (listed in descending order by number of findings contained within each category):
- Withdrawal: Withdrawing from the grief experience or people and environments (e.g. workplace) to manage response to death, either temporarily or longer term
- Emotional impact: The emotional responses experienced by health professionals resulting from the death of patients
- Physical symptoms: The physical symptoms of grief experienced by health professionals resulting from the death of patients
- Variable responses: The experience of grief can vary from patient to patient as well as over time within a health profession
- Persistent memories: The thoughts and memories of the patient remain, sometimes for a lifetime
- Responses to deal with the death of patients
- Impact on faith or spirituality: Experiencing the death of patients can impact or result in a religious or spiritual response.
Withdrawal encompassed the most findings and highlighted a strong tendency for health professionals to retreat in their grief experiences. Study participants stated:
“I just don’t have that, that same desire to that same zest for life, If you had a bad day at work, or something bad has happened, you don’t want to go home, or me, I just want to go home and have quiet time, and not really take phone calls, or really go out and talk about it.”41(p.138)
“I just remove myself from the situation for a few moments or hours or whatever I can allow myself in that particular situation.”33(p.124)
The emotional impact of the death of a child was widely discussed, such as:
“My first time a patient of mine, my first death, I remember my husband picking me up and just not knowing what to say because I was inconsolable.”35(p.12)
“We basically had 2 kids die in 1 shift, that's a lot when 1 child passes and you move to the next child—their heart stops and you haven’t had time to, to grasp the death of the first child, you have to move on to try and stop the second child from dying. I didn’t have a chance to say good-bye to the parents. I didn’t feel closure with this family.”37(p.352)
Synthesized finding 2: Compounding grief
Health professionals identified factors that contributed toward worsening or compounding the experience of grief. Although some of these factors align with expected grief response, such as depth of relationship and identification with patient and family, other factors unnecessarily compounded the grief experience. These included a lack of organizational support for grieving staff and feeling professional restrictions on expressions of grief. This synthesized finding contained the most findings and categories:
- Personal responsibility: The health professional feels responsible for the patient's health outcome, whether rational or not
- Personal loss: The health professional experiences the death in a similar way as a personal loss
- Not professionally acceptable to express grief: Feelings or professional expectations that grief should not be experienced or expressed by health professionals when patients die
- Relationships with patients and families: Health professionals, especially with long duration of care, often develop a caring bond and relationship with the patient and their family
- Lack of organizational support: A lack of departmental or institutional support for grief response
- Prioritizing good patient care: Health professionals prioritize provision of good patient care and, at times, even above their own self care
- Communication difficulties: Difficulties in communicating with the patient or family about prognosis or death
- Inevitability of death: The patient's health state reaches a point where death is unavoidable; however, sometimes futile care is still provided, which may result in distress for the care providers.
Health professionals often discussed the sense of responsibility, including guilt, that they felt with their patient's death:
“And it was just (pause) I guess it was the guilt - did I miss something. The kid wasn’t supposed to die. And then you think as to yourself in the code situation did you do everything you were supposed to do. And even though you knew you did everything right you still question yourself. This child was not supposed to die, so what did we do wrong?”34(p.50)
This was similarly expressed with the sense of their own loss at the child's death:
“So, for me I still, and maybe that's a kind of like a little bit unprofessional but I see them a little bit of my personal loss. I don’t see just patients as patients, I think given that we’re dealing with children who have a really closer, relationship to them, and you are thinking okay, I, shouldn’t maybe not grieve so much about it because it was not directly my child and it's not the family and things like this.”41(p.137)
In spite of these feelings, some health professionals felt that they were not able to express their grief due to their professional requirements:
“I didn’t feel, as his carer, I was entitled to grieve – that was only for his family.”22(p.586)
Synthesized finding 3: Alleviating grief
Health professionals identified factors that contributed toward improving or alleviating the experience of grief. In spite of the difficult experience, support from friends, family or colleagues; focusing on the positives; and allowing time and experience to assist with coping led to improvements in the experience of grief. The following categories contributed to this synthesized finding:
- Support from people: Support in grief can be provided by various people including colleagues, patient's family, own family members or friends
- Positive outcomes: Despite the negative experiences, there can be positive outcomes within the circumstances of a patient's death
- Importance of time and experience: The passage of time and more experience helps with grief and managing death or patients, but not being able to take time to grieve is challenging
Support from people included support from colleagues within the healthcare team:
“I think we also need to receive care, right? We need opportunities to unburden. On a bad day, someone who's doing better than me could support me. We need moments to verbalize what we feel about these babies, about the staff. We need to feel supported. If you feel protected and cared for, you’re better able to care for others.”36(p.E7)
Health professionals also gained support from family members:
“I try not to take it home, but I do! There are many times I talk to my husband about a horrible case.”37(p.354)
Some participants found good experiences within the deaths including relief that the child's suffering had ended:
“Sometimes it's a relief in that way to know they don’t have to go through all that.”33(p.41)
and gaining a new perspective on everyday life:
“I’ve realized it's potentially started to creep into areas of my life in a way that I handle stress, and in the way that I am thinking more deeply of a [sic] work life choices. Priorities and in terms of spending time with my own family and friends and things like that.”41(p.138)
This review explored the experiences of grief of health professionals when a pediatric patient dies in their care. Twelve studies were included following a thorough search process and assessment of methodological quality for inclusion. Included studies met the established criteria for quality assessment and were conducted in five countries across Europe, North America and South America. The findings of included studies led to three synthesized findings focused on the physical, behavioral, psychological or spiritual symptoms of grief; factors that compounded grief; and factors that alleviated grief.
Previous systematic reviews presented similar findings to this review, however, in different participants or contexts. A systematic review focused on health professionals’ experiences of stillbirth care found that health professionals experienced emotional, knowledge and system factors that impacted their provision of care.11 Further, they wanted improvements in training and workplace support. Another systematic review exploring health professionals’ experiences of perinatal death revealed similar findings of emotional impact, personal responsibility and withdrawal.12 The authors also found that additional training and support was beneficial and could take the form of vocational training, debriefing or counseling and supervision. These findings of the need for further education and debriefing were reiterated in another systematic review that focused on nurses’ experiences of adult patient death.13 It also revealed related findings to the positive impact of prior experiences of patient death on subsequent experiences. Additionally, there were similarities between the impact of patient death on faith and spirituality; there was a supportive effect on dealing with death but also the potential for the death to negatively impact faith. A systematic review that focused on new graduate nurse experiences of adult death found additional themes of the need for further education, the emotional impact of death and the prioritization of patient care.15 These findings strengthen the importance of this review's findings with grief being widely and commonly experienced. The need for additional staff support seems not only relevant to pediatric health professionals but also to the wider health professional cohort.
This review presented new findings of the personal loss felt by health professionals when a patient dies. Study participants described the connection and identification they felt with the patient and the patient's family, and experienced the grief similarly to a loss within their personal lives.33,37,41 Sometimes this was linked to similarities between patients’ characteristics and something or someone in the professionals’ own lives.1 Other times it related to the connection and relationship developed with the patient and the patient's family during care provision.34,39 These findings also related to the empathy experienced by the health professionals.35,36 It is hypothesized that feeling the loss personally in a professional environment contributed to the experiences of grief similar to loss and bereavement in the health professional's own life. Interventions to support staff who have experienced pediatric patient death often focus on education and debriefing.14 There may be benefit to offering staff similar support as to what is given to those who experience personal loss, such as access to bereavement leave. Given the personal nature of the loss, it would be appropriate for organizations to implement policies and practices that support staff who have experienced bereavement and grief, regardless of whether personal or professional.
This review focused only on qualitative research; however, there is also quantitative research in this area. Other studies found high levels of grief42 and psychological distress2 among health professionals who had experienced the death of a pediatric patient. Similarly, this review intentionally focused on the experience of grief rather than the variety of coping strategies that individuals undertake to manage their grief. The alleviating and compounding factors highlighted in the synthesized findings provide insight into the experience but also link to existing research focused on how health professionals cope with grief. Some of the literature surrounding health professionals’ coping with grief focused on professional boundaries, memories of patients and families, disconnecting from emotions and protecting others through euphemistic labeling,43 as well as regulating emotions, solving problems, restructuring thoughts, using distractions, compartmentalizing and withdrawing from patients’ families.44 This link was expanded with study findings that highlighted the use of peers and family, individual coping with compartmentalizing, and spiritual beliefs.45
While the participant inclusion was broad to include many health professionals, the available studies predominantly included nurses. This may be because nurses compose a high proportion of the health workforce and because of the round-the-clock nature of nursing care provision. According to the WHO, nurses and midwives make up over 50% of the health workforce in many countries.46 However, research that is more inclusive of non-nursing professionals would highlight whether these findings are generalizable. Additionally, only studies in English were eligible for inclusion, although the included studies originated from five English- or Portuguese-speaking countries. Greater depth of study may be possible with expanded language inclusion criteria, which would be better able to incorporate cultural differences of grief expression.
This systematic review evaluated and synthesized the qualitative evidence surrounding health professionals grief after pediatric patient death. The synthesized findings highlight the symptoms of grief along with the compounding and alleviating factors in this experience. This aligns with evidence from quantitative studies. The ConQual Summary of Findings shows that the confidence in quality of the 12 included studies and relevant findings produced synthesized findings rated as low or moderate. This was due to methodological and reporting issues contained within the published documents. Publication language and breadth of health professional inclusion in studies limit the generalizability of these findings.
Recommendations for practice
Grades of recommendations are used to classify recommendations for practice.47 Using a binary system, recommendations are rated as Grade A (strong recommendation) or Grade B (conditional recommendation). The presence of many credible (rather than unequivocal) findings impacted the credibility of findings and the strength of the recommendations from this review.
The synthesized findings along with the contained findings highlight the relevance of the grief experiences of health professionals when pediatric patients die. It is recommended that health professionals maintain awareness of their own response to pediatric death as well as the potential response of their colleagues (Grade B). This anticipation may lead to accessing additional support or coping strategies during this time. For healthcare professionals and policy makers, these findings, especially those surrounding compounding grief, provide insight into some ways that professional environments have impacted the grief experiences and, at times, exacerbated them. It is conditionally recommended that employers implement strategies and policies to support staff who are experiencing grief associated with their work environment (Grade B).
Recommendations for research
The synthesized findings for this review were rated as low or moderate, as shown in the ConQual Summary of Findings. This impacted the strength of recommendations. It is recommended that qualitative studies improve the quality of completion and reporting of congruence between research methodology and philosophical perspective, research question and data analysis, along with addressing the researchers’ cultural and theoretical position and the influence between researchers and participants. These recommendations align with the critical appraisal criteria18 that were unclear or not achieved in the studies assessed. Additionally, most studies included only nurses as participants. Broader inclusion of participants in the healthcare team (health professionals and non-health professionals) is recommended for future research. A similar review that includes languages other than English would strengthen the generalizability of findings.
Vikki Langton for her advice in developing the search strategies for this review.
Sophie Tiley for her assistance with critical appraisal of studies.
This review forms a component of the requirements for the completion of a Doctor of Philosophy for SB.
An Australian Government Research Training Program Scholarship provided financial support for SB. The funder had no involvement in or influence on the development or outcomes of this review.
Appendix I: Search strategies
Searched January 2019, records retrieved 1231.
Searched January 2019, records retrieved 961.
Searched January 2019, records retrieved 1640.
Searched January 2019, records retrieved 726.
Searched January 2019, records retrieved 1694.
ProQuest Dissertations and Theses Global
Searched January 2019, records retrieved 173.
Appendix II: Studies ineligible following full-text review
Reason for exclusion: Ineligible phenomena of interest
Banahan SR. An investigation of how child life specialists cope with the death of a patient in the hospital setting [master's thesis]. Oakland, (CA): Mills College; 2015. p. 29.
Bartholdson C, Lützén K, Blomgren K, Pergert P. Timing the breaking point: a difficult ethical problem in childhood cancer care. Pediatr Blood Cancer. 2013;60:168.
Bloomer MJ, Endacott R, Copnell B, O’Connor M. “Something normal in a very, very abnormal environment”-Nursing work to honour the life of dying infants and children in neonatal and paediatric intensive care in Australia. Intensive Crit Care Nurs. 2016;33:5–11.
Bloomer MJ, O’Connor M, Copnell B, Endacott R. Nursing care for the families of the dying child/infant in paediatric and neonatal ICU: nurses’ emotional talk and sources of discomfort. A mixed methods study. Aust Crit Care. 2015;28(2):87–92.
Conte TM. The lived experience of work-related loss and grief among pediatric oncology nurses. J Hosp Palliat Nurs. 2014;16(1):40–6.
Cook KA, Mott S, Lawrence P, Jablonski J, Grady MR, Norton D, et al. Coping while caring for the dying child: nurses’ experiences in an acute care setting. J Pediatr Nurs. 2012;27(4):e11–21.
Downey V, Bengiamin M, Heuer L, Juhl N. Dying babies and associated stress in NICU nurses. Neonatal Netw. 1995;14(1):41–6.
Duncan SE, Arnon R, DiPietrantonio C, Ehrlich K, Knight CS, Chu J, et al. Pediatric liver transplant teams coping with patient death. J Pediatr Gastroenterol Nutr. 2018;67(2):169–72.
Eggly S, Meert KL, Berger J, Zimmerman J, Anand K, Newth CJ, et al. Physicians’ conceptualization of “closure” as a benefit of physician-parent follow-up meetings after a child's death in the pediatric intensive care unit. J Palliat Care. 2013;29(2):69–75.
El Sayed MF, Chan M, McAllister M, Hellmann J. End-of-life care in Toronto neonatal intensive care units: challenges for physician trainees. Arch Dis Child Fetal Neonatal Ed. 2013;98(6):F528–33.
Erikson AE, Davies B. Maintaining integrity: how nurses navigate boundaries in pediatric palliative care. J Pediatr Nurs. 2017;35:42–9.
Erikson AE. Maintaining integrity: how nurses navigate boundaries in pediatric palliative care [dissertation]. San Francisco (CA): University of California, San Francisco; 2008. p. 189.
Farasat H. The invisibility of being a new nurse: the experience of transition from student to registered children's nurse [dissertation]. Southampton (UK): University of Southampton; 2011. p. 199.
Forster E, Hafiz A. Paediatric death and dying: exploring coping strategies of health professionals and perceptions of support provision. Int J Palliat Nurs. 2015;21(6):294–301.
Granek L, Barrera M, Scheinemann K, Bartels U. Pediatric oncologists’ coping strategies for dealing with patient death. J Psychosoc Oncol. 2016;34:39–59.
Granek L, Bartels U, Barrera M, Scheinemann K. Challenges faced by pediatric oncology fellows when patients die during their training. J Oncol Pract. 2015;11(2):e182–9.
Hinds PS, Puckett P, Donohoe M, Milligan M, Payne K, Phipps S, et al. The impact of a grief workshop for pediatric oncology nurses on their grief and perceived stress. J Pediatr Nursi. 1994;9(6):388–97.
Ives-Baine L, Lindsay G, Wel EV, Barker C, Saini J, Cross N. Essential Engagement: NICU nurses’ relationships within end-of-life care. Illn Crisis Loss. 2013;21(4):297–314.
Keenan PM, MacDermott C. Prayer and religion—Irish nurses caring for an intellectually disabled child who has died. Religions (Basel). 2016;7(12).
Kellogg MB, Barker M, McCune N. The lived experience of pediatric burn nurses following patient death. Pediatr Nurs. 2014;40(6):297–301.
Lindsay J, Heliker D. The unexpected death of a child and the experience of emergency service personnel. J Emerg Nurs. 2018;44(1):64–70.
Macpherson CF. Peer supported storytelling for grieving pediatric oncology nurses: a pilot study [dissertation]. Seattle (WA): University of Washington; 2007.
Macpherson CF. Peer-supported storytelling for grieving pediatric oncology nurses. J Pediatr Oncol Nurs. 2008;25(3):148–63.
Mandell F, McClain M, Reece RM. Sudden and unexpected death: the pediatrician's response. Am J Dis Child. 1987;141(7):748–50.
McClain M, Mandell F. Sudden infant death syndrome: the nurse counselor's response to bereavement counseling. J Community Health Nurs.1994;11(3):177–86.
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Meyer RL. Caring for children who die unexpectedly: patterns that emerge out of chaos. J Pediatr Nurs. 2014;29(1):23–8.
Price J, Jordan J, Prior L. A consensus for change: parent and professional perspectives on care for children at the end-of-life. Issues Compr Pediatr Nurs. 2013;36:70–87.
Santos LSB dos, Costa KF de L, Leite AR, Leite IDR, Costa Oliveira G dos S, Sarmento NT. Emotional perceptions and reactions of nursing professionals assisting children with cancer. Rev Enferm UFPE. 2017;11(4):8.
Serwint JR, Rutherford LE, Hutton N, Rowe PC, Barker S, Adamo G. “I learned that no death is routine”: description of a death and bereavement seminar for pediatrics residents. Acad Med. 2002;77(4):278–84.
Vivian L. “We didn”t do anything wrong, we tried our best, but they just died … we tried, we really tried’: Child deaths in the paediatric intensive care unit, Red Cross Children's Hospital, Cape Town, South Africa. Afr Stud. 2012;71(2):287–303.
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Zerbi Schwartz L, Bulgheroni A, Maselli C. When a child dies in the emergency room: institutional and emotional impact. Ital J Pediatr. 2006;32(6):338–44.
Reason for exclusion: Ineligible participants
Bastos RA, Quintana AM, Carnevale F. Psychological distress experienced by nurses who work with patients in death process: a clinical-qualitative study. Trends Psychol. 2018;26(2):807–17.
Kaunonen M, Tarkka M, Hautamaki K, Paunonen M. The staff's experience of the death of a child and of supporting the family. Int Nurs Rev. 2000;47(1):46–52.
Lee K, Dupree CY. Staff experiences with end-of-life care in the pediatric intensive care unit. J Palliat Med. 2008;11(7):986–90.
Masia RT, Basson WJ, Ogunbanjo GA. Emotional reactions of medical doctors and students following the loss of their patients at the Dr George Mukhari Hospital emergency unit, South Africa. S Afr Fam Pract (2004). 2010;52(4):356–63.
Saines JC. Phenomenon of sudden death: part I. Accid Emerg Nurs. 1997;5(3):164–71.
Reason for exclusion: Ineligible phenomena of interest and participants
Bergstraesser E, Inglin S, Abbruzzese R, Marfurt-Russenberger K, Hošek M, Hornung R. The needs of professionals in the palliative care of children and adolescents. Eur J Pediatr. 2013;172(1):111–8.
Rudd R. A phenomenological study of the professional support requirements and grief interventions to parents bereaved by an unexplained death at different time periods in the grief process [dissertation]. Reno (NV): University of Nevada, Reno; 2010. p. 198.
Rudd RA, D’Andrea LM. Professional support requirements and grief interventions for parents bereaved by an unexplained death at different time periods in the grief process. Int J Emerg Ment Health. 2013;15(1):51–68.
Senthil K, Serwint JR, Dawood FS. Patient end-of-life experiences for pediatric trainees: spanning the educational continuum. Clin Pediatr (Phila). 2016;55(9):811–8.
Reason for exclusion: Ineligible context
Pollard LW. Social worker experience of fatal child abuse: an interpretive phenomenological analysis [dissertation]. Sheffield (UK): Sheffield Hallam University; 2014. p. 213.
Reason for exclusion: Did not clearly report qualitative data
Costello J, Trinder-Brook A. Children's nurses’ experiences of caring for dying children in hospital. Paediatr Nurs. 2000;12(6):28–31.
Duncan S, Arnon R, Dipietroantonio C, Knight C, Chu J, Annunziato R. Coping with patient death on pediatric liver transplant teams. Am J Transplant. 2016;16:395.
Ffrench-O’Carroll R, Feeley T, Doherty E, Crowe S. Paediatric deaths and the paediatric intensive care unit registrar: grief reactions, coping strategies and supports utilised. Anaesthesia. 2018;73:12.
Gerhardt CA, Grollman JA, Baughcum AE, Young-Saleme T, Stefanik R, Klopfenstein KJ. Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows. J Palliat Med. 2009;12(4):323–8.
Giessl IB. Reactions of bereaved parents, nonbereaved parents and mental health professionals to the death of children [dissertation]. Cincinnati (OH): University of Cincinnati; 1980. p. 88.
Johnson A, Siden H, Charles G. Exploring resident physicians’ experiences practicing in pediatric palliative care: a hermeneutic method of inquiry. J Pain Symptom Manag. 2018;56(6):e37.
Keene EA, Hutton N, Hall B, Rushton C. Bereavement debriefing sessions: an intervention to support health care professionals in managing their grief after the death of a patient. Pediatr Nurs. 2010;36(4):185–189; quiz 190.
Kesselheim JC, Atlas M, Adams D, Aygun B, Barfield R, Eisenman K, et al. Humanism and professionalism education for pediatric hematology-oncology fellows: a model for pediatric subspecialty training. Pediatr Blood Cancer. 2015;62(2):335–40.
Kline N, Thom B. The lived experience of grief, loss, and coping among pediatric oncology nurses (733). J Pain Symptom Manage. 2011;41(1):292.
Kristjanson L, Cousins K, MacPherson R, Dadd G, Watkins R. Evaluation of a nurse education workshop on children's grief. Contemp Nurse. 2005;20(2):193–200.
Levick J, Fannon J, Bodemann J, Munch S, Ahern K. NICU bereavement care and follow-up support for families and staff. Adv Neonatal Care. 2017;17(6):451–60.
Maiandi S, Vitale L, Castellini G. The experience of death in pediatric critical care nurses: a survey in three hospitals in northern Italy. Intensive Care Med. 2011;37:S424.
O’Mahony S, Gerhart J, Abrams I, Greene M, McFadden R, Tamizuddin S, et al. A multimodal mindfulness training to address mental health symptoms in providers who care for and interact with children in relation to end-of-life care. Am J Hosp Palliat Care. 2017;34(9):838–43.
O'Sullivan D, Stone G, Corry E, Stewart P, Noonan H, Murphy AM. Bereavement counselling for healthcare workers in the aftermath of child death. Ir J Med Sci. 2017;186(6):S220.
Rushton CH, Reder E, Hall B, Comello K, Sellers DE, Hutton N. Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering. J Palliat Med. 2006;9(4):922–33.
Santos IIA, Santos LSB, Costa KFL, Leite AR, Rocha ID, Gomes IC, et al. Emotional reactions of nursing professionals who watch children with cancer. Eur J Surg Oncol. 2015;41:S158.
Setou N, Sakaguchi Y, Kurokawa K, Takada S. Effectiveness of professional training in bereavement care: Survey of Japanese pediatricians supporting families who have lost a child. Pediatr Int. 2015;57(4):699–705.
Thomas J, Kohner N. The death of a baby: training for staff in bereavement care. Care of the Critically Ill. 1994;10(2):73–5.
Vega-Vega P, González-Rodríguez R, Palma-Torres C, Ahumada-Jarufe E, Mandiola-Bonilla J, Oyarzún-Díaz C, et al. Revealing the meaning of the mourning process of pediatric nurses facing the death of cancer patients. Aquichan. 2013;13(1):81–91.
Vivian L, Argent A. “We didn’t do anything wrong, we tried our best, but they just died...we really tried.” End-of-life decisions in the paediatric intensive care unit (PICU), Red Cross Children's Hospital (RCCWMH), Cape Town, South Africa. Pediatr Crit Care Med. 2011;12(3):A157.
Wheeler JH. Pediatric nurses’ attitudes, practices, and barriers regarding the care of infants and children living with life -threatening conditions and their families [dissertation]. Houston (TX): University of Houston; 2005. p. 146.
Zhang W, Lane BS. Promoting neonatal staff nurses’ comfort and involvement in end of life and bereavement care. Nurs Res Pract. 2013;2013:1–5.
Reason for exclusion: Article was not published in English
García S V, Rivas Riveros E. Intensivists pediatric nursing experience in the death of a child meaning, grief, bioethical aspects. Ciencia y Enfermeria. 2013;19(2):111–24.
Monforte VL, Candot C, Pomicino L, Buchini S. La morte in oncoematologia pediatrica: vissuti e strategie di coping del personale infermieristico. Gli Infermieri dei bambini Giornale italiano di scienze infermieristiche pediatriche. 2015;7(2):40–3.
Tirelli D, de Barbieri I, Zaggia C. Experiences of grief by pediatric intensive care nurses in Padua University Hospital: an exploratory study. Gli Infermieri dei bambini Giornale italiano di scienze infermieristiche pediatriche. 2011;3(3):80–6.
Reason for exclusion: Study findings/illustrations reported in another publication
Kaplan LJ. The emotional experiences of treating dying children: nurses speak out [dissertation]. [Newton (MA)]: Massachusetts School of Professional Psychology; 1997. p. 261.
Papadatou D. The grieving healthcare provider: variables affecting the professional response to a child's death. Bereave Care. 2001;20(2):26–9.
Rashotte JM. Pediatric intensive care nurses and their grief experiences [thesis]. Ottawa (Canada): University of Ottawa; 1996. p. 215.
Appendix III: Studies excluded on assessment of methodological quality
Reason for exclusion: Incongruence of research methodology with research question or objective, and incongruence of research methodology with the representation and analysis of data
Kain VJ. An exploration of the grief experiences of neonatal nurses: a focus group study. J Neonatal Nurs. 2013;19(2):80–8.
Kaplan LJ. Toward a model of caregiver grief: nurses’ experiences of treating dying children. Omega (Westport). 2000;41(3):187–206.
Papadatou D, Martinson IM, Chung PM. Caring for dying children: A comparative study of nurses’ experiences in Greece and Hong Kong. Cancer Nursing. 2001;24(5):402–12.
Reid F. Grief and the experiences of nurses providing palliative care to children and young people at home. Nurs Child Young People. 2013;25(9):31–6.
Reason for exclusion: Incongruence of research methodology with the representation and analysis of data
Papadatou D, Bellali T, Papazoglou I, Petraki D. Greek nurse and physician grief as a result of caring for children dying of cancer. Ped Nurs. 2002;28(4):345–53.
Rashotte J, Fothergill-Bourbonnais F, Chamberlain M. Pediatric intensive care nurses and their grief experiences: a phenomenological study. Heart Lung. 1997;26(5):372–86.
Appendix IV: Characteristics of included studies
Appendix V: Findings not supported by the data
Appendix VI: Study findings with illustrations
Appendix VII: Study findings linked to categories and synthesized findings
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