Abstract
Background:
Children who lose a sibling often receive inadequate attention, leading to lasting psychological and emotional challenges. Health care providers recognize the importance of comprehensive bereavement support but may lack knowledge for effective delivery.
Aim:
This study sought to analyze and synthesize primary research on children bereaved by a sibling to gain insight into their actual grieving experiences.
Methods:
A systematic review of qualitative studies was conducted following the Joanna Briggs Institute (JBI) methodology. The review protocol was registered on PROSPERO (CRD42022289604). Electronic databases including MEDLINE, CINAHL, PsycInfo, Scopus, and Igaku Chuo Zasshi were searched from inception to April 15, 2024. Critical appraisal was performed using the JBI Critical Appraisal Checklist for Qualitative Research.
Results:
Twenty-three articles met inclusion criteria, synthesizing experiences of 466 children. Four synthesized findings were generated: Children recognized internal and external changes in themselves after losing their siblings; children found it hard to believe their sibling had died, experienced feelings of loss and fear of death, and sometimes hid their emotions; various types of grief work allowed children to find their place after the loss, but ineffective grief work led to prolonged grief; and children’s relationships with others were either strengthened or weakened depending on others’ understanding and reactions to the loss.
Conclusions:
This review highlights the complex nature of sibling grief in children. It emphasizes the importance of recognizing children’s unique grief experiences, facilitating effective grief work, and providing appropriate support from family, friends, and health care professionals. The findings suggest a need for tailored grief support programs for children who have lost siblings, considering their cultural backgrounds. However, the low ConQual score of the synthesized findings indicates that recommendations should be considered with caution.
Introduction
Opportunities to support bereaved families have emerged in pediatric palliative care. However, after the death of a child, families report feelings of abandonment primarily by health care organizations. In particular, bereaved siblings who are often referred to as “forgotten mourners” are often overlooked because of their grieving parents.1–2
Surviving siblings are often overlooked and report increased anxiety, guilt, sadness, loneliness, anger, depression,3–5 and difficulties with peer and family relationships.4,6 Additionally, it has been reported that the grief experienced by surviving siblings can persist or recur throughout their lives.7–8 Studies have indicated that many surviving siblings are at higher risk of medical, psychiatric, and behavioral problems.9–11 In particular, it has been suggested that siblings are more likely to experience prolonged and persistent grief reactions if they lose a sibling during adolescence.9,12 Therefore, the passing of a sibling exerts a deep and enduring impact on the psychological and emotional well-being of surviving siblings. 13
Children often feel overlooked after the loss of a sibling, with limited opportunities to talk about their deceased siblings. Therefore, they often feel alone in their grief.13–14 The grief of surviving siblings has been compounded by the failure of those around them to acknowledge that the children themselves are also experiencing a significant loss. 15 Some parents, in particular, may be so preoccupied with their own grief after the death of their child that they do not realize that their surviving child is grieving as well. Parents’ responses to the loss of a child and their grieving patterns play a crucial role in influencing the grieving process of surviving siblings.13,16,17 Surviving siblings often feel guilty about unresolved issues between deceased siblings and their parents. 16 They then experience secondary losses from the loss of attention from grieving parents and the loss of normalcy. 18 Although sibling grief is a significant issue, health care providers, such as psychologists, counselors, or social workers, may not know where to start, what is working, or what is most impactful for the family, despite understanding the importance of comprehensive bereavement support. 19 Children who have lost siblings have been subject to integrative reviews. However, limitations in terms of methods and subjects20–21 and contextual differences 22 have been observed. These reviews have primarily focused on certain aspects of the impact of sibling loss and interventions for sibling loss.23–24 Grievers’ voices play an important role in supporting siblings who have experienced their loss. Furthermore, the results of the study that qualitatively analyzed the real voices of the parties involved will be useful in building specific support measures.
Therefore, this review aimed to synthesize and appraise the primary research literature on children to determine the grief experiences of children who have lost their siblings. The findings will provide insight into the grieving experience of children who have lost siblings and will help promote pediatric palliative care.
Methodology
This review was conducted according to the Joanna Briggs Institute (JBI) methodology for conducting systematic reviews of qualitative evidence, 25 which adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. The JBI Critical Appraisal Checklist for Qualitative Research is widely recognized as a standard tool for systematically evaluating the methodological quality of qualitative research. This standardized instrument consists of 10 essential criteria, which assess various methodological elements including the appropriateness of data collection methods and the rigor of analytical procedures. 25 In this review, we strove to ensure methodological rigor based on these evaluation criteria. The review protocol was registered with PROSPERO (CRD42022289604) in November 2021. In April 2024, a modification to the registration was made regarding the search.
Search strategy
An electronic database search was performed on April 15, 2024. The search strategy was developed in collaboration with an information specialist and included Medical Subject Headings and text terms related to the experiences of children and adolescents coping with the loss of a sibling. This search approach encompassed academic databases to identify published studies and gray literature sources (materials not published through traditional commercial channels) to uncover unpublished research. The language was required to be in English or Japanese, without restrictions on the publication date. The following electronic bibliographic databases were searched for published studies: MEDLINE (Ovid), CINAHL (EBSCOhost), PsycInfo (EBSCOhost), Scopus, and Igaku Chuo Zasshi. The gray literature was searched using MedNar and Data Archiving and Networked Services. This strategy used the following terms identified by a librarian (S.T.) to conduct the search: “adolescent,” “child,” “infant,” “puberty,” “teen,” “teenage,” “kinder,” “young,” “youth,” “siblings,” “sister,” “brother,” “bereavement,” “death,” “grief,” “end of life,” and “lost” (Supplementary Appendix SA1).
The screening process involved two authors (A.F. and H.M.) who independently reviewed the titles and abstracts of the identified articles. For articles that met the initial screening criteria, their full texts were assessed against the inclusion criteria, with reviews conducted by either A.F. and H.M., or A.F. and S.U. The final selection of studies to be included was determined through thorough discussion and consensus among the authors (A.F., H.M., and S.U.).
Inclusion criteria
This qualitative study included case studies. Additional research presenting qualitative evidence (excluding mixed-method studies) on the topic of interest was used, including interviews, focus groups, ethnographic studies, observations, and open-ended survey questions. Furthermore, research methodologies, such as phenomenology, grounded theory, ethnography, action research, and discourse analysis, were included.
The included studies may have been written in English or Japanese language. Studies that recorded the grief experiences of children under the age of 19 years who had lost a sibling due to illness or unforeseen accidents were included. The exclusion criteria were as follows: studies presenting quantitative data, such as those with a mixed-method design; nonempirical writings (e.g., reviews, opinion papers, and commentaries); and studies in which the cause of death of a sibling was stillbirth or suicide. Furthermore, studies in which the child’s death occurred after the 19th birthday of their sibling were excluded. In instances where research participants included individuals aged 19 years or older, the data pertaining to those aged 19 years or older were excluded from the analysis. Only the data from participants within the specified age range were considered for the analysis.
This review focused on describing the grief experiences of children who have been bereaved by a sibling because of medical illness or unforeseen circumstances. This review evaluated studies that report on the broad emotional, psychological, relational, and social effects of bereavement; the lived experience of bereavement (phenomenological features); and how these experiences are perceived and understood. We accepted any contexts in this study, such as neonatal intensive care units, pediatric intensive care units, palliative and hospice care, pediatric oncology units, and any children’s hospital or medical department that cares for children at the end of life or at home.
Methodological quality assessment
Eligible studies were critically appraised using the JBI Critical Appraisal Checklist for Qualitative Research. 25 The following items on the critical assessment checklist were deemed crucial for ensuring methodological quality: Q2 (congruity between research methodology and research questions/objectives), Q4 (congruity between research methodology and data representation/analysis), and Q8 (representation of participants and their voices). These questions are considered important to ensure methodological quality, particularly to guarantee logical consistency among the research questions, methodology, and analysis.
Studies that were rated “No” for any of these questions were excluded. For each study, two reviewers independently performed the critical appraisal and then confirmed the assessment of the methodological quality in pairs (A.F. and H.M., or A.F. and S.U.). Discussions between the reviewers were used to settle any disputes regarding the methodological quality.
Data extraction, synthesis, and analysis
Data were extracted from the included studies using a standardized JBI data extraction tool for qualitative evidence. 25 For each study, two independent reviewers (A.F. and H.M., or A.F. and S.U.) performed data extraction. The extracted data included specific details about the study populations, context, methods, and phenomena of interest relevant to the review question and objectives. To ensure consistency in the extraction process, two reviewers met to compare the data extracted from each of the included studies in Microsoft Excel. Disagreements that arose between the reviewers were resolved through discussion. No study required further information from the corresponding authors.
A finding was defined as a verbatim extract of the authors’ analytic interpretation. For consistency, findings were extracted at the same level (e.g., themes and categories) across a study. Each finding was accompanied by an illustration, which included quotations in participants’ voices to represent the meaning. Each finding was appraised in credibility as “unequivocal (U),” “credible (C),” or “unsupported,” according to the criteria in the JBI Manual for Evidence Synthesis. 25 Unequivocal findings were accompanied by an illustration that was beyond reasonable doubt and therefore not open to challenge. Credible findings were accompanied by an illustration that lacked a clear association with the findings and was therefore open to challenge. Unsupported findings were not supported by an illustration and were excluded from the synthesis.
Qualitative research findings from all studies included in this review, with accompanying illustrations, were extracted and pooled. The findings and illustrations were identified through repeated readings of the text. Only unequivocal and credible findings were included in the synthesis. The findings were then categorized based on similarity in meaning. The categories and their associated findings with illustrations were confirmed by re-examining the context of primary studies and organized in Microsoft Excel and NVivo. These categories then underwent meta-aggregation, which generated a comprehensive set of synthesized findings that could be used as a basis for evidence-based practice. These were drafted by the first reviewer (A.F.) and then discussed with the other four reviewers (S.U., H.M., Y.H., and M.S.) and revised to reach consensus.
The final synthesized findings were graded according to the ConQual 26 approach for establishing confidence in the output of qualitative research synthesis and are presented in a Summary of Findings (Supplementary Appendix SA2). The level of confidence for each synthesized finding was scored as high, moderate, low, or very low. Qualitative studies were ranked as high quality at the starting point, and each synthesized finding was then downgraded based on dependability and credibility. The confidence rating in the synthesized findings was based on the ConQual score.
Results
Characteristics of the included studies
A PRISMA flowchart is shown in Figure 1. The search of the electronic databases identified 6183 citations. After the removal of duplicates and screening of titles and abstracts, 147 publications were subjected to a full-text review, and 45 were critically appraised. The primary reason for exclusion was that the studies did not clearly describe the data collection or analysis methods. In the Critical Appraisal Results of Qualitative Research, Q7 had the lowest percentage of “Yes” at 17.8%, followed by Q1 and Q6, which were approximately 30%. Q9 and Q10 were in the 40% range. The remaining items had a percentage of Yes of >50%, with Q2 having the highest percentage at 77.8% (Supplementary Appendix SA3). Twenty-three publications3,27–48 met the inclusion criteria and were included in the review.

Preferred Reporting Items for Systematic Reviews and Meta-Analyses.
The participants in the majority of the 23 studies were adolescents aged 8 years or older. Of the 466 participants, approximately two-thirds were women, and most were White. The context of all studies was in a community setting. Data collection methods were semistructured interviews or narrative interviews, except for one study in which open-ended questions were used. Content analysis was the most frequently used analysis method (seven studies), followed by narrative analysis (five studies). Other methods used were qualitative analysis, thematic analysis, interpretive phenomenological analysis, and grounded theory. Most studies were conducted in the United States. The details of the included studies are shown in Table 1.
Summary of the Studies Reviewed According to the Year of Publication (n = 23)
AIDS, Acquired Immune Deficiency Syndrome; NICU; Neonatal Intensive Care Unit; PICU, Pediatric Intensive Care Unit; SD, standard deviation.
Synthesis
A total of 136 findings were collected from the included studies. Four synthesized findings and 21 categories were generated to assess the grieving experiences of children who have lost a sibling. The illustrations of each finding are shown in Supplementary Appendix SA4. The four synthesized findings were as follows: Children recognized internal and external changes in themselves after the loss of their siblings; after the loss of a sibling, the child finds it hard to believe that their sibling has died and simultaneously has feelings of loss and fear of death. Sometimes, they may hide from expressing their feelings. Various types of grief work allow children to find their place after the loss of a sibling; however, if this work does not work, the grief will be prolonged. After the loss of a sibling, a child’s relationship with others may be strengthened or weakened, depending on the depth of understanding and differences among those around them.
Children recognized internal and external changes in themselves after the loss of their siblings (Table 2).
Children Recognized Internal and External Changes in Themselves After the Loss of Their Siblings
U, unequivocal; C, credible.
The children experienced “changes in themselves” cognitively and behaviorally, such as becoming unable to cope with sudden changes and becoming angry. Furthermore, they felt changes in their school life, such as dropping out of school, and the impact of this loss on their schoolwork.
After the loss of a sibling, the children had felt emotionally separated from their parents and other family members and experienced behavior changes within the family. We named this phenomenon as “changes in my family’s behavior.”
After the loss of a sibling, the child experienced an “identity change,” such as a change in the view of self and the world.
Some children experienced “changes in economic conditions,” indicating that the family’s financial situation is worsening.
After the loss of a sibling, the child finds it hard to believe that their sibling has died and simultaneously has feelings of loss and fear of death. Sometimes, they may hide from expressing their feelings (Table 3).
After the Loss of a Sibling, the Child Finds it Hard to Believe that Their Sibling Has Died and Simultaneously Has Feelings of Loss and Fear of Death: Sometimes, They May Hide From Expressing Their Feelings
After the loss of a sibling, the child had feelings of disbelief in the death of a sibling (disbelief in the death of a sibling) and a feeling of not believing that the death of a sibling was real (cannot believe my sibling died). Simultaneously, they experienced feelings of loss and fear of death over time. Occasionally, the children reacted by hiding their sad feelings and emotions from their parents and others.
Various types of grief work allow children to find their place after the loss of a sibling; however, if this work does not work, the grief will be prolonged (Table 4).
Various Types of Grief Work Allow Children to Find Their Place After the Loss of a Sibling; However, If this Work Does Not Work, the Grief Will Be Prolonged
After the loss of a sibling, the child experienced getting through funeral services and burial events. Furthermore, they attempted to protect or maintain their lives, continue their ongoing schoolwork, and behave calmly. Through grief work, the children found a place of refuge or safety. Moreover, they remembered their deceased siblings and made sense of their deaths. Specifically, they faced their grief, communicated with their parents, siblings, and friends about the loss of a deceased sibling, continued their relationship with the deceased sibling, and imitated the deceased sibling or took over what the deceased sibling was doing.
Reviewing the way things are, seeing the positives of the loss, and talking to others about the deceased sibling helped facilitate the grieving process for the children. For some children, religious or cultural support facilitated the grieving process. In contrast, for some children, the inability or unwillingness to express their grief resulted in poor grief work and prolonged grief (transitional grief work).
After the loss of a sibling, the child’s relationship with others may be strengthened or weakened, depending on the depth of understanding and differences among those around them (Table 5).
After the Loss of a Sibling, the Child’s Relationship with Others May Be Strengthened or Weakened, Depending on the Depth of Understanding and Differences Among Those Around Them
The children felt a sense of loneliness from the experience that others could not understand; this phenomenon was referred to as “Others cannot understand my experience.”
Regarding relationships, children may be brought closer to their friends by spending time together; however, the relationship may be weakened by a friend’s interest in the cause of a sibling’s death or by a misguided understanding of the sibling’s death.
Some experiences showed positive changes, such as children having closer relationships with their families and supporting each other after the loss of a sibling, whereas other experiences showed that relationships were diluted or worsened due to family concerns and grief differences. Furthermore, some experiences changed from negative to positive and vice versa during the grief process (relationships with parents or other family members).
Discussion
This qualitative systematic review explored the grieving experiences of children who have lost a sibling. Four synthesized findings were developed to understand the grieving experience in this group. The synthesized findings should be worded to emphasize a line of action that provides the basis for developing recommendations. 49 Therefore, we named the synthesized findings by sentence(s) that accurately conveyed the meanings to generate a set of statements.
“Children recognized internal and external changes in themselves after the loss of their siblings.” In this synthesized finding, because of the distinct and powerful nature of sibling relationships, children may be uniquely affected by the death of a sibling.50–52 Thus, children experienced cognitive and behavioral, life, and identity changes after the loss of a sibling. Furthermore, children also experienced changes in their family’s economic situation due to the death of their siblings. Some children stopped going to school after the loss of a sibling, which is said to have socioeconomic consequences, including income, social assistance, and teenage pregnancy rates. 53 This emphasizes that the death of a sibling changes the economic situation in the family. After the death of a sibling, parents also experience grief and experience symptoms associated with grief. 54 Parental reactions to the death of a child and parental grieving patterns have been reported to significantly affect siblings who are experiencing the grieving process of a sibling’s death. Rubin and Malkinson 17 and Horsley and Patterson 13 highlight this impact, which our findings corroborate by showing notable changes in parental behavior after sibling loss. For example, one participant described their mother’s profound emotional withdrawal: “she just completely fell apart, like she didn’t eat, she wouldn’t even get out of bed,” while another noted increased protectiveness: “Mom more overprotective, like when I come from school, she told me to walk home, keep the phone in my pocket.” These contrasting parental responses demonstrate how family circumstances influence children’s grief experiences.
“After the loss of a sibling, the child finds it hard to believe that their sibling has died and simultaneously has feelings of loss and fear of death. Sometimes, they may hide from expressing their feelings” described the grief reaction of a child who has lost a sibling. We believe that this is due to the situation on the part of parents, who, like the dying children themselves, often refrain from talking about their grief to protect their siblings from further suffering. 55 This study also supported the findings of Crehan et al. 56 that children may begin to fear death after the death of a sibling and may perceive each physical symptom they experience as an indicator that they are going to die. Children sometimes hide from expressing their feelings, which contributes to the risk of complicated grief and symptoms of posttraumatic stress disorder. 57 Children often cope with grief alone because they do not want to upset their grieving parents, 57 a characteristic response of children highlighted in this study.
According to Søfting et al., 58 various types of grief work allow children to find their place after the loss of a sibling; however, if this work does not work, the grief will be prolonged and emphasized that children better understand that loss is real by participating in rituals and that it is crucial for them to be recognized as grievers by adults. Participating in rituals of the child’s own making can be seen as facilitating the child’s grief work. The loss of a sibling causes the child to experience various internal and external changes. The child then believes that psychological, physical, emotional, and spiritual safety can lead to a healthy adjustment to the loss. 59 Emotional detachment from the deceased was considered essential for successful adjustment to bereavement according to Freud and other medical models. 60 Recently, however, the importance of an ongoing connection with the deceased and accepting the loss and living with it has been emphasized.61–62 Davies et al. 50 studied the long-term effects of childhood sibling bereavement. They found that surviving siblings maintained connections with their deceased siblings through various actions, such as displaying pictures, having ongoing conversations, and praying for protection and guidance in difficult times. Their findings emphasized the importance of these continued bonds, as children processed their sibling’s death and made sense of their loss in their own way.
“After the loss of a sibling, the child’s relationship with others may be strengthened or weakened, depending on the depth of understanding and differences among those around them.” Parents and children have their own grief after the loss of a sibling, which differs among individuals. Open communication with family members helps build a foundation for mutual relationships; however, if they do not or cannot share their feelings with each other, we believe that the child will feel alone. Children’s experiences in friendships, depending on their interactions with each other and the attitudes of the other, can be positive or negative. Peer relationships have been shown to help children cope after the death of a sibling. 63 Flexible friendships that allow the child to freely discuss the deceased and recall stories related to the loss are helpful to the child, 63 whereas the opposite can be stated as weakening the relationship. Therefore, developing comprehensive support programs would be necessary. These should focus on enhancing health care professionals’ understanding of sibling grief and the significance of sibling support, while also implementing interventions such as peer support groups, family-centered counseling, and creative expression workshops to help bereaved children process their grief and maintain healthy relationships.
Implications for Practice
Understanding grief among children who have lost a sibling is important for many health care providers to support children who have experienced bereavement so that they do not become isolated and their grief does not become more complicated. In this review, we found that children might feel loneliness by not being understood by others. Furthermore, parents who are close to the child are also experiencing grief, making it difficult for them to recognize the child’s grief. Thus, it is important for health care providers to provide correct information to the child from the time the sibling is hospitalized and receiving treatment, to understand what is worrisome for the child, to communicate openly, and to be there for the child to facilitate their grief work.
Strengths and Limitations
This is the first review to exclusively focus on the direct experiences of children facing the death of a sibling, allowing the voices of this vulnerable population to be represented. The integrative review methodology allowed us to include children’s voices from high-quality qualitative research findings. However, the children’s voices recorded were primarily those of children and adolescents from the United States; therefore, most participants were from White backgrounds. Thus, the findings are not necessarily applicable to the experiences of children from all cultures and ethnic groups. Furthermore, this review is limited to the English or Japanese literature.
Based on the ConQual score, all four synthesized findings were rated low. The reason was the existence of some “credible” illustrations, although their proportion was small in the overall analysis. Additionally, most studies did not adequately address the potential influence between the researcher and the research process (Critical Appraisal Checklist Q7). Therefore, the recommendations from this review should be interpreted with caution.
Conclusions
This review showed the experiences of children who have lost a sibling. The children experienced various changes after the death of their siblings and expressed their own grief reactions. Furthermore, the children spent time doing grief work and finding their own place in the world while continuing to bond with their deceased siblings. However, grief reactions and coping strategies may be complex, depending on the depth and differences in the understanding of those around them. The experts used the evidence from the review to reinforce their messages for the practice and expansion of grief support for children who have lost a sibling in their respective settings.
In the future, it will be imperative to establish a program tailored for health care professionals to provide support to children who have lost siblings, considering their cultural backgrounds.
Authors’ Contributions
A.F. conducted the conceptualization of the study, developed and implemented the search strategy, organized the work, screened citations and full-text articles, abstracted data, critically reviewed the quality of the included studies, performed data analysis, interpreted the results, created tables and figures, and authored the article. S.U. contributed to developing and implementing the search strategy, screened citations and full-text articles, abstracted data, critically assessed the quality of the studies, conducted data analysis, authored the article, critically revised the article for important intellectual content, and approved the final submitted article. H.M. also played a role in developing and implementing the search strategy, screening citations and full-text articles, abstracting data, critically assessing study quality, performing data analysis, critically revising the article for important intellectual content, and approving the final submitted article. Y.H. and M.S. were involved in interpreting the results, critically revising the article for important intellectual content, and approving the final submitted article. All authors have provided their consent for publication.
Footnotes
Acknowledgments
We thank Sayuka Takuma, our research librarian, for her expert assistance in developing the systematic search strategy. We also thank Ai Izumi and Takahiro Iwasaki for their help in reviewing keywords and integrating output data.
Author Disclosure Statement
The authors declare that there is no conflict of interest.
Funding Information
This work was supported by JSPS KAKENHI Grant Number JP 21K10913.
Ethical Approval and Consent to Participation
This systematic review relied on research previously conducted by other scientists and did not directly engage with human participants, human samples, or human data.
Data Access Statement
The data analyzed in this study were obtained from both publicly accessible databases and subscription-based databases. Links to freely accessible resources are provided in the reference list, and information regarding subscription access is also available for the remaining resources.
