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Ethical Issues in Bereavement Research with Minors: A Scoping Review

Associated data.

Data from this study are Available online the researchers upon reasonable request.

There are various ethical issues in bereavement research. Most of the literature focuses on ethical issues involving adult participants. However, it is conceivable that research with minors poses particular ethical challenges, and little is known of the ethical issues involved in bereavement research with minors. A scoping review adhering to the PRISMA-ScR guidelines was conducted to address this gap and to contribute to better research practices. Searches in Embase, Emcare, EBM Reviews, Medline, PsycINFO (all accessed via Ovid), CINAHL, Scopus, SSCI, and the journals Death Studies and OMEGA identified 40 relevant peer-reviewed articles, while 25 relevant theses/dissertations were identified through ProQuest Global. The main ethical concerns identified include informed consent, risk to participants, and privacy and confidentiality. Findings of this review may inform bereavement researchers when designing their studies and to ensure the safety of their participants. The findings can also be used in clarifying the decisions made to a research ethics board, thus contributing to the quality of the research in this field. Future reviews may examine how the ethical issues reported in this review are similar or different to those reported in research with minors in other fields and expand to include more experimental research.

1. Introduction

There exists an established body of literature on the topic of ethical issues that arise in bereavement research [ 1 , 2 , 3 ]. This is unsurprising, as bereavement is characterized as an emotionally fraught period of time for study participants, since they lost someone they shared a relationship with. As such, the nature of bereavement makes it even more crucial that bereavement research treats participants’ well-being with utmost concern. Cook [ 1 ] provided an overview of general research guidelines that pertain to human subjects and how they might apply to bereavement studies, on the basis that bereavement research “has unique aspects that should be acknowledged” [ 1 ]. This overview raised several questions and observations, including: the subject of inadvertent coercion due to recruitment through care organizations, whether the recently bereaved are mentally fit to give consent, and the balance between providing all the information available so that individuals can make an informed decision versus making the information comprehensible without losing its original meaning (e.g., the connotations between “not living” and “death”) [ 2 ]. Overall, Cook [ 1 ] argued that ethical issues in bereavement research go beyond ethics guidelines and gaining approval from an ethical review board, which are not adequate substitutes for the researcher’s own sensitivities. It is argued that ethical issues should be addressed with the same diligence as the other parts of research design, considering how intertwined scientific issues and ethical concerns are. Moreover, Cook [ 1 ] posits that bereavement researchers should be less reactionary in addressing ethical issues, but rather take the initiative by generating discussion within the field. This is meant to simultaneously acknowledge the generosity of participants in sharing their experiences, as well as ensuring efforts to best safeguard their well-being is continuously ongoing.

Parkes [ 3 ] examined the ethical issues of conducting bereavement research. The observations fell into three broad categories: “gaining access to bereaved people,” “obtaining informed consent,” and “preventing possible harm to respondents”. Parkes developed a guideline based on the ethical issues he observed, which also addresses many of the questions posed and observations made in the overview by Cook [ 1 ]. The guideline for bereavement research included: gaining approval from the appropriate ethical approval board; matching communication with the participants to their cognitive level, with provisions made if the participant is cognitively impaired; avoiding coercion of potential recruits; ensuring safeguards are in place to minimize harm to the participants; remaining an impartial figure as a researcher; clearly outlining the bounds of confidentiality; and the research having merit and a design appropriate to answering the question(s) posed. Parkes’ guidelines are broad and provide general advice. However, there is little consideration given towards bereavement research involving vulnerable populations, including children and adolescents. Further, having been published in 1995, the guideline naturally did not contemplate more contemporary research settings such as the use of technology in the context of bereavement research [ 4 ].

Since Cook [ 1 ] noted that ethical issues in bereavement research were a little-explored topic, there have been strides in the area with researchers exploring the influence of scientific issues on ethical concerns. Stroebe and colleagues [ 5 ] considered the design and methodological aspects of bereavement research and addressed the associated ethical issues to include when and how best to approach potential participants after the bereavement. The question of “how soon?” is one without a definitive answer, as evidenced by how time since bereavement varies widely between studies. As well, a range of research has been conducted with various participant groups. Rosenblatt [ 6 ] focused on issues inherent in qualitative interviews with bereaved families, Hyson and colleagues [ 7 ] on bereaved parents, Omerov and colleagues [ 8 ] on those bereaved by traumatic deaths (specifically, suicide), and Feigelman and colleagues [ 9 ] on parents bereaved by suicide, to name a few studies.

There is also research regarding the experiences/perspectives of bereavement research participants, and whether participating causes undue harm or distress. It is noted that ethics research boards were found to reject research proposals more often on topics deemed as being sensitive [ 10 ]. As such, researchers have experienced a pushback against research proposals regarding death and related topics [ 1 , 11 , 12 ]. Gatekeepers, such as caretakers (e.g., parents, legal guardians), professionals (e.g., social workers, counsellors/therapists, medical staff), educational staff, and research ethics review boards, can also be reluctant to allow access to study participants due to the research topic [ 2 , 13 ]. However, for all the worries by these third parties, the bereaved themselves, both adults and minors, see the merits of bereavement research [ 10 , 14 ]. Overall, they reported that any distress that arose during participation was outweighed by the benefit of discussing their experiences, expressing their emotions, and having something positive come from their loss, i.e., being able to help others [ 15 , 16 ]. These attitudes persisted even in the face of traumatic loss, such as through suicide [ 17 ].

Thus, while there is an established body of literature examining ethical issues in bereavement research, the caveat is that it tends to be focused on adults. However, adults normally do not undergo developmental changes as children do when entering adolescence. During puberty, youth experience many changes ranging from physical to cognitive [ 18 ]. These changes can be compounded with other factors, such as the relationship between the deceased and the bereaved person [ 18 ]. For example, parental death is considered a severe if not incomparable loss for minors and can impact their development and threaten how the family functions. Alternatively, a sibling death can lead to the disenfranchised grief of the surviving minor—that is, their mourning is overlooked and unsupported, as it is not conventionally recognized such as that of parental grief [ 19 , 20 ]. Overall, experiencing the death of a close person is one of the most devastating events in the lives of children and adolescents with both potential short-term and long-term impacts on their mental health and social functioning, including increased risks for depression, anxiety, and substance abuse [ 20 ]. Due to the unique circumstances of children and adolescents, compared to adults, ethical issues that arise when conducting bereavement research with minors should be treated as distinct problems. Therefore, bereavement researchers should not solely rely on general ethics guidelines for human research.

The scoping review was undertaken to find what ethical issues have been identified when conducting bereavement research with minors over the last two decades (since the year 2000). By exploring this topic, this review can enhance our understanding of the ethical issues involved in this research, inform future bereavement research practices, and provide direction for further research studies on the topic.

2. Materials and Methods

A scoping review following the framework developed by Arksey and O’Malley [ 21 ] and adhering to the “Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews” (PRISMA-ScR) guidelines ( http://prisma-statement.org/Extensions/ScopingReviews , last accessed on 4 August 2022) was conducted [ 22 ]. It was decided to conduct a scoping review of peer-reviewed articles and dissertations because such reviews can be more general in terms of topic breadth and the research question posed and include various study designs [ 21 ].

2.1. Peer Reviewed Articles

2.1.1. eligibility criteria.

To be included in the review, studies had to: (i) be about bereavement, defined as being the death of a person the participant shared a relationship with; (ii) include minors, defined as individuals who are under the age of majority (which in most OECD countries, is set at 18 years old [ 23 ]; (iii) address ethical issues, as defined by the Australian National Statement on Ethical Conduct in Human Research 2007 (updated 2018), henceforth referred to as the “National Statement” [ 24 ]; (iv) be qualitative, quantitative, mixed methods, or a case study; (v) have been published between 2000 and 2022 inclusive; and (vi) be available as a complete text.

Studies were excluded if: (i) they were not on human bereavement; (ii) did not include minors in the sample; (iii) only mentioned general ethical concerns and procedures without providing insight into the reasoning behind the decisions made; (iv) focused on the development of new manuals or measurement instruments; (v) were review studies of non-peer-reviewed publications (e.g., books, editorials, reports, news articles, web pages); (vi) the full text was unavailable or was not in English.

2.1.2. Information Sources and Search Strategy

Researcher A.E.S.P. conducted a search in Embase, Emcare, EBM Reviews, Medline, PsycINFO (all accessed via Ovid), CINAHL, Scopus, and Social Sciences Citation Index in April–May 2021, and the search was updated in July 2022. The following search string with a combination of MeSH and text words was used in Medline: (children.mp. OR Child/OR adolescents.mp. OR Adolescent/OR youth.mp. OR Minors/OR minors.mp.) AND (Bereavement/OR bereave*.mp. OR Grief/OR grief.mp. OR mourn*.mp. OR suicide loss.mp.) AND (Ethics/OR ethics.mp. OR ethics research.mp. OR Ethics, Research/OR ethics committee research.mp. OR Ethics Committees, Research/). The same search string was utilized for the other databases. No filters were used in conjunction with the search string.

Researcher A.E.S.P. also conducted a handsearch, that is, a manual search, through the online versions of Death Studies ( https://www.tandfonline.com/loi/udst20 , accessed on 14 August 2022) and OMEGA-Journal of Death and Dying ( https://journals.sagepub.com/loi/omea , accessed on 14 August 2022) in August 2021, and updated the search in July 2022. The journals were chosen due to their unique focus on death and bereavement. It was decided that a handsearch was prudent because while the journals are included in the searched databases, only select publication years are covered, and relevant literature may have been missed during the database search due to the keywords they are tagged with. Since the review focuses on contemporary ethical issues, the volumes of Death Studies and OMEGA spanning from 2000–2022 (as of July 2022) were searched.

A handsearch of the reference lists of the peer-reviewed articles included in the review was conducted, as well as a forward citation search using Google Scholar in July 2022.

Following the searches, researcher A.E.S.P. deleted the doubles and screened title and abstracts of the leads. Next, researchers A.E.S.P. and K.A. screened the full texts against the eligibility criteria. Disagreements between the two researchers were resolved through an iterative process and discussion with the third researcher K.K. Figure 1 summarizes the search and selection process.

PRISMA flow diagram for peer-reviewed literature.

2.1.3. Data Extraction

Researcher A.E.S.P. extracted the following information from the selected studies: authorship and publication characteristics (i.e., author(s), publication year), study characteristics (i.e., study purpose, design, location, setting), sample characteristics (i.e., sample size, age of the participants, sex distribution, the deceased’s relation to the participant, time since bereavement), and the ethical issues addressed in the research.

2.1.4. Synthesis of Results

Data analysis consisted of a descriptive and thematic analysis. The descriptive analysis involved synthesis of information about authorship and publication characteristics, study characteristics, and sample characteristics. The thematic analysis adopted a deductive approach and utilized the framework of the National Statement [ 24 ], as outlined in Table A1 , to determine the main themes.

The analysis occurred through an iterative process described by Braun and Clarke [ 25 ] and consisted of reading and rereading the articles to produce initial codes. Next, initial codes were grouped in potential themes, which we reviewed against the framework of the National Guidelines before deciding about the main themes.

Research ethics guidelines from other English-speaking countries were considered. Specifically, those from the United States (Belmont Report, 1979; the Federal Policy for the Protection of Human Subjects, aka the “Common Rule”; 2018) [ 26 , 27 ], Canada (Tri-Council Policy Statement, 2018) [ 28 ], the United Kingdom (UK Policy Framework for Health and Social Care Research, 2017) [ 29 ], and New Zealand (HRC Research Ethics Guidelines, 2021) [ 30 ]. However, there were no substantive differences between the guidelines in terms of what was considered to be ethically sensitive. Further, some aspects of these rejected guidelines made them less suitable for the purposes of the scoping review. The review is restricted to the years 2000–2022 inclusive; thus, it would be illogical to use the 1979 Belmont Report. The application of the Common Rule [ 27 ] is complex in that human research with federal stakeholders is subject to that of federal body’s regulations, and their head has the discretion in deciding whether the activity being carried out even falls under the Common Rule [ 27 ]. The UK Policy Framework for Health and Social Care Research [ 29 ] had portions that were of little consequence for the review, since it is organized by stakeholder responsibilities (e.g., there are sections for chief investigators, funders, organizations, etc.). As well, the legal remit of the document in regard to research involving children differs between the various countries making up the UK. The Canadian Tri-Council Policy Statement [ 28 ] was discounted, as it did not include a section focusing on research involving children, but rather mentioned it throughout the document. The New Zealand HRC Research Ethics Guidelines [ 30 ] include a section on child participants, but the discussion is less detailed than that found in Australia’s National Statement [ 24 ].

The National Statement [ 24 ] was chosen due to a number of reasons, including its use of guiding principles that are more abstract concepts (e.g., justice, see Appendix A for the principles and their definitions) to complement more concrete issues such as gaining informed consent; inclusion of sections specific to different participant groups, including children and young people; and its acknowledgement that “these ethical guidelines are not simply a set of rules. Their application should not be mechanical. It always requires, from each individual, deliberation on the values and principles, exercise of judgment, and an appreciation of context” [ 24 ].

2.2. Dissertations

2.2.1. eligibility criteria, information sources and search strategy.

A preliminary search through relevant handbooks/chapters revealed that they tended to offer little beyond a general overview of ethics. As such, it was decided to limit the search to dissertations. We applied the same inclusion and exclusion criteria as for the peer-reviewed articles. A search was conducted using ProQuest Dissertations and Theses Global, as it was identified as hosting the most extensive collection of full-text theses worldwide ( https://www.proquest.com/index , accessed on 14 August 2022). The search was conducted in September 2021 and updated in July 2022, with the following search string imputed into the “advanced search” function: ab(bereave*) AND ab(children OR adolescent* OR minors OR youth) AND ethic*. No filters were used in conjunction with the search string.

Researcher A.E.S.P. conducted the searches and screened the leads based on title and abstract. Researchers A.E.S.P. and K.A. screened the full text of the selected leads. Undetermined cases were resolved through discussion with the third researcher K.K. Figure 2 summarizes the search and selection process.

PRISMA flow diagram for dissertations.

2.2.2. Data Extraction

Researcher A.E.S.P. extracted the following information from the selected dissertations: authorship and submission characteristics (e.g., author(s), submission year, country of origin), study characteristics (e.g., study purpose, design, location, setting), sample characteristics (e.g., sample size, age of the participants, sex distribution, the deceased’s relation to the participant, time since bereavement), and the ethical issues addressed in the research.

2.2.3. Synthesis of Results

The method of data analysis for the dissertations was the same as that used for peer-reviewed literature.

3.1. Peer Reviewed Articles

3.1.1. study characteristics.

A total of 40 articles were included in the review ( Table A2 ). Four studies were from Australia [ 14 , 31 , 32 , 33 ], eleven from the US [ 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 ], seven from Sweden [ 45 , 46 , 47 , 48 , 49 , 50 , 51 ], four from Norway [ 52 , 53 , 54 , 55 ], four from Denmark [ 56 , 57 , 58 , 59 ] four from the UK [ 60 , 61 , 62 , 63 ], and one from Canada [ 64 ]. There were five studies of non-western origins: two from South Africa [ 65 , 66 ] one from China [ 67 ], one from Iran [ 68 ], and one from the Philippines [ 69 ]. Four studies were published in the 2000s [ 41 , 42 , 52 , 53 ], 22 in the 2010s [ 31 , 35 , 36 , 37 , 38 , 39 , 40 , 43 , 47 , 48 , 49 , 54 , 55 , 57 , 58 , 60 , 61 , 62 , 63 , 64 , 65 , 66 ], and 14 from the 2020s [ 14 , 32 , 33 , 34 , 44 , 45 , 46 , 50 , 51 , 56 , 59 , 67 , 68 , 69 ]. Most studies were qualitative in design; there were also five quantitative [ 42 , 43 , 46 , 50 , 67 ], and five mixed-methods studies [ 14 , 45 , 51 , 52 , 62 ].

Overall, the age ranges of the young participants varied widely, with the youngest participants aged 4 years [ 64 ], and there were 10 studies that included participants over the age of 18 but categorized them in the child/youth groups [ 14 , 31 , 32 , 33 , 37 , 44 , 46 , 52 , 56 , 62 ]. Parents and other adult figures were commonly included in the studies as participants [ 14 , 31 , 33 , 37 , 39 , 41 , 42 , 44 , 45 , 49 , 50 , 51 , 52 , 53 , 55 , 59 , 60 , 63 ].

3.1.2. Ethical Values and Principles

Most studies identified multiple ethical issues, with the most common concerns regarding consent [ 31 , 32 , 33 , 37 , 40 , 46 , 56 , 57 , 63 , 64 , 67 , 68 , 69 ], potential risks and mitigation strategies [ 14 , 34 , 35 , 36 , 37 , 45 , 53 , 56 , 58 , 59 , 60 , 65 , 66 , 68 , 69 ], and privacy and confidentiality [ 34 , 38 , 41 , 45 , 46 , 52 , 56 , 59 , 60 , 63 , 65 , 68 ]. Table A2 in Appendix B details the study characteristics and the ethical issues found in the peer-reviewed studies.

3.2. Dissertations

3.2.1. study characteristics.

A total of 25 records were included in the review ( Table A3 ). Eighteen studies were from the US [ 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 ], one from the UK [ 88 ], two from Canada [ 89 , 90 ], one from Sweden [ 91 ] and three from South Africa [ 92 , 93 , 94 ]. Thirteen studies were conducted in the 2000s [ 70 , 73 , 75 , 76 , 77 , 78 , 81 , 82 , 84 , 87 , 89 , 90 ] and fifteen in the 2010s [ 71 , 72 , 74 , 79 , 80 , 83 , 85 , 86 , 88 , 91 , 92 , 93 , 94 ]. Most studies were qualitative studies. Five studies were quantitative [ 71 , 74 , 75 , 77 , 81 ], and five other studies used mixed methods [ 76 , 78 , 84 , 85 , 91 ].

The age ranges of the participants varied, with the youngest participants aged 3 years [ 83 ], and five studies including participants over the age of 18 in the youth groups [ 82 , 88 , 91 ]. Some studies included adult respondents as well [ 70 , 73 , 78 , 79 , 80 , 81 , 84 , 85 , 87 , 90 , 91 , 93 ].

3.2.2. Ethical Values and Principles

Most studies identified multiple ethical issues. The most common principles were privacy and confidentiality [ 71 , 72 , 73 , 74 , 76 , 78 , 79 , 82 , 83 , 84 , 86 , 87 , 88 , 89 , 90 , 91 , 92 ], informed consent [ 70 , 72 , 73 , 78 , 80 , 83 , 84 , 85 , 86 , 88 , 89 , 91 , 92 , 93 ], and potential risks and mitigation strategies [ 72 , 73 , 75 , 76 , 77 , 80 , 84 , 86 , 88 , 89 , 91 , 92 , 93 , 94 ]. Table A3 in Appendix B presents the study characteristics and the ethical values and principles identified in the dissertations.

3.3. Overall Results Regarding the Handling of Ethical Issues

The ethical issues found in the 40 peer-reviewed articles and 25 dissertations can be categorized into overarching themes: privacy and confidentiality, informed consent, and potential risks and associated mitigation strategies.

3.3.1. Privacy and Confidentiality

Some researchers used intermediaries, such as support services or school counsellors, to recruit participants [ 46 , 67 , 68 , 71 , 73 , 74 , 78 , 86 , 88 ]. There were instances when permission from third parties such as government bodies was needed in order to access data [ 52 ]. In other instances, the law deemed information public [ 43 , 44 ]. Disclosure and maintaining the confidentiality of data shared by minors unless there were extenuating circumstances such as report of abuse/neglect was an important issue [ 45 , 59 , 63 , 94 ]. Keeping confidentiality was not always the default however, and permission from the minor’s guardian to do so had to be sought [ 73 ]. Family studies also posed issues of confidentiality between family members if group interviews were held [ 41 , 73 ]. Researchers commonly assigned pseudonyms or identification numbers, and withheld personal identifiers [ 38 , 47 , 48 , 49 , 59 , 69 , 71 , 72 , 76 , 78 , 79 , 80 , 83 , 84 , 86 , 87 , 90 , 91 , 92 , 94 , 95 ]. Some participants forewent the use of pseudonyms however [ 86 , 92 ].

A less common was the issue of the ownership of the generated information/artefacts [ 65 , 94 ]. For example, in cases of interventions involving memory work with orphans, the information being gathered is private, as it is family history. As such, the ownership of the information ultimately resides with the participants, who have control over the “product”, and its presentation and access [ 65 ]. Regarding more tangible products such as artwork produced by the participants, it could be seen as the researcher temporarily borrowing them for their studies. In which case, there are issues related to the storage and preservation of the artefacts to ensure that they are not altered/damaged, and how analysis is carried out (e.g., unable to mark the artefacts), which in turn can lengthen the analysis process [ 94 ].

3.3.2. Informed Consent

The issue of obtaining informed consent focuses on the fact that the participants are minors, and there are both legal and developmental factors to be considered. There were various approaches in how researchers gained consent for minors. They obtained consent from the participant’s guardian [ 54 , 87 ]; sought both guardian consent and participant assent [ 35 , 37 , 38 , 40 , 42 , 43 , 44 , 47 , 52 , 53 , 55 , 56 , 57 , 64 , 65 , 72 , 74 , 76 , 79 , 83 , 84 , 85 , 86 , 90 , 91 , 92 , 95 ]; or they judged on a case-by-case basis if the participant was cognitively mature enough to provide consent, given that they first reach a certain age threshold, such as age 16 [ 31 , 32 , 33 ], and between 7 and 17 [ 64 ].

Adherence to the law was also a factor in obtaining consent from minors [ 45 , 46 , 51 ]. There are times consent is assumed, since the data are judged to be in the public sphere, such as chat threads on open forums [ 46 , 47 , 48 ]. The power dynamics between minors and adults (i.e., researchers, parents, etc.) and how it could influence their decision to participate was of concern [ 72 , 80 ].

3.3.3. Potential Risks and Mitigation Strategies

Researchers were focused on mitigating risks to participants rather than the potential benefits to justify participation. Participants would be screened, for example, based on factors such as time since bereavement [ 54 , 58 , 88 , 95 ], assessment by others such as the partner organization or professionals who referred the participant [ 87 , 89 ], self-assessment [ 34 , 80 ], or whether the bereavement was due to traumatic reasons [ 59 ]. Collaboration between researchers and other parties such as interventionists and healthcare professionals allowed for better monitoring of participants’ well-being [ 45 , 53 , 60 , 62 ]. Participants’ mental/emotional states were assessed after taking part in the study, and in some studies, there would be further follow-up [ 35 , 68 , 92 ]. Participants could also approach researchers, or they were offered references to professional support services should they experience distress during or after the research [ 36 , 37 , 62 , 66 , 69 , 72 , 73 , 75 , 78 , 86 , 92 ].

There were few studies that also factored in the well-being of the researchers and other involved third parties such as program facilitators. Vaswani [ 63 ] suggested that since bereavement researchers employ skills similar to therapists, they also should adopt methods that therapists employ to maintain their well-being. Researchers relied on support from others such as peers, one’s academic supervisor, or agencies [ 86 , 88 ]. In regard to other involved parties such as program facilitators, it was the responsibility of the individuals themselves as well as their organizations to ensure their well-being through means such as training; the researchers had no part in this aspect [ 65 ].

4. Discussion

This scoping review was conducted to answer the question of what ethical issues have been identified when conducting bereavement research with minors, using the Australian National Statement [ 24 ] as a background. An extensive search through peer-reviewed literature and dissertations found 68 relevant studies (40 peer-reviewed, 25 dissertations). The studies differed in terms of purpose, participant demographics, time since bereavement, and research setting. There were some commonalities of note between the studies, however, specifically in publication origin (location). This review focused on studies published over the last two decades (2000–2022). It appeared that discussion of ethical issues has become more commonplace in recent years, which may indicate an increasing awareness for ethical issues in this field.

Modern research ethics was established, as a response to the human experimentation conducted during World War II, in the form of the Nuremberg Code (1946). The Nuremberg Code served as a foundation for the Declaration of Helsinki (1964). Unfortunately, these guidelines were not strictly regulated, nor was there any incentive to abide by them. However, to use the US as an example, knowledge of research ethics violations on home soil spurred change due to public outcry. Details of the Tuskegee Syphilis Study would become public in the 1970s. This would lead to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research, whose recommendations would take the form of the Belmont Report. The Belmont Report was used for federal regulations and was continually revised until 2001 [ 95 ]. The Belmont Report informed the Federal Policy for the Protection of Human Subjects, colloquially known as the “Common Rule”, [ 27 ], currently in use in the US. Research funded by any of the signatory agencies must abide by it. Even if funding is not involved, some states may have laws that incorporate the Common Rule. Most educational institutions in the US utilize the Common Rule as a matter of institutional policy. Compliance can be reinforced via employment contracts that refer to these policies, making it a matter of employment law [ 96 ]. The US is not the only country to tie funding and legislation with adherence to research ethics guidelines. The previously mentioned guidelines of Canada [ 28 ], Australia [ 24 ] New Zealand [ 30 ], and the UK [ 29 ] do so as well to varying degrees.

Most studies and dissertations originated from western countries. There may be various factors for this seeming disinterest from non-western countries in ethical issues in bereavement research. One factor may be attributed to developing countries’ lack of capacity for ethics review committees [ 97 ]. Another factor can be differences in cultural values and beliefs. These differences can lead to unique interpretations of research ethics that were founded on Western principles [ 98 , 99 ]. There may also be a difference in research priorities.

In general, the ethical issues are addressed straightforwardly in published articles, with authors listing the steps they have taken in the design/process to make the research comply with ethical guidelines. It was uncommon for any in-depth reporting on concerns or analysis on why certain measures were taken. In the dissertations, on average, the discussion of ethical issues was more detailed than in peer-reviewed articles, seeing as most of the dissertations had sections solely devoted to ethical considerations. The difference may largely be a matter of practicality. With journals that have word/page limits in place, authors may prioritize reporting data analysis and results rather than discussing ethical quandaries if they are not the focus of the research.

Comparing the results of this scoping review to the ethical issues discussed in the literature regarding bereaved adults [ 1 , 3 ], it is evident that privacy and confidentiality, informed consent, and risks and benefits are common concerns regardless of the age of the participants. Looking at research involving minors from other fields (e.g., social research) for comparison, informed consent and confidentiality are topics of particular interest as well [ 100 , 101 ]. The specifics and importance of these concerns may differ between minor and adult participants. These differences can be attributed to how adults perceive minors, which in turn affects the research. Adult perception of minors is influenced by childhood being marginalized such that adult–child power dynamics are unequal; pre-conceived notions and attitudes towards children; and differences that may be attributed to developmental factors [ 102 ]. There are also larger forces at work beyond the attitudes of individual adults. Ironically enough, ethical issues can arise from the use of research ethics guidelines. This can be attributed to the fact that, commonly, they were not based on a child-centric perspective. There can also be a mismatch because the framework for the guideline might not be suitable for bereavement research [ 103 ]. Overall, the ethical issues of bereavement research with minors are treated as a common hurdle for researchers to resolve. However, future studies should also consider these larger, institutional factors to better inform research practice.

This review demonstrates there are many considerations when conducting ethical bereavement research involving minors. However, the extent to which the issues identified are specific to bereavement research, or are merely common concerns found in any research involving minors deemed to be sensitive, is debatable. In a Delphi study on identifying ethical issues in mental health research involving adolescents [ 104 ], some of the most common issues were related to consent and confidentiality, which is in line with what was found in this review. However, the issues discussed in that Delphi study [ 104 ] are more nuanced. For example, in certain bereavement studies, it was permissible for participants who were 16 years of age or older to give consent without the additional consent of their guardian necessary, provided the researchers deemed them competent to do so [ 31 , 32 ]. However, this was the only circumstance found in which guardian consent was circumvented.

This is in contrast with the Delphi study [ 104 ], which provides further extenuating circumstances in which adult consent may be waived, including: if there may be significant benefits for the minor in participating; there is minimal risk associated with the study and other details of the study (e.g., the research topic is of sensitive nature, such as that of familial relationships); the status of the guardian and/or the minor (e.g., the adult themselves are unfit to give informed consent/the minor is evaluated as being cognitively capable); and extenuating circumstances (e.g., participation is a matter of life and death) [ 104 ]. This difference is relevant, as it raises the question why such nuances were not found in the bereavement studies, considering that many involved the experiences of the bereaved youth, and ties in with their mental health (e.g., [ 31 , 43 , 50 , 74 ]).

In general, the overall sense is that the underlying issue with bereavement research involving minors involves a struggle of safeguarding participant well-being while not being paternalistic. Children and adolescents are viewed as those in need of protection, and as such, extra measures are taken to ensure that they are not put at risk. Further, death, while not a taboo in Western countries, is still deemed a sensitive topic. Death is ever present in the media. However, human research ethics committees and gatekeepers alike persist in being reluctant for the subject to be broached with minors, even in the face of evidence of the potential benefits. The overly cautious approach taken may, ironically enough, send the signal that death is something to hide when the intent of research is the opposite [ 90 ].

Limitations

There are limitations to the review. In terms of the evidence found, the perspectives presented in the literature are relatively homogenous in nature, since the majority of the studies originated from western countries. In addition, most studies were qualitative in design, which raises the question of why quantitative and mixed methods studies do not report ethical issues as frequently. Finally, certain information (e.g., sample size, age, sex distribution, and time since bereavement) was not regularly reported in the peer-reviewed literature, which makes it harder to spot data trends.

The scoping review did not include an appraisal of the quality of the included studies due to the focus of the review question being exploratory in nature. As such, the methodological quality and risk of bias in the included studies are unknown [ 105 ]. There is also room for debate regarding how the ethical issues are categorized, as only the guiding principles of the National Statement on Ethical Conduct in Human Research 2007 (updated 2018) [ 24 ] and the issues they outline were utilized for the scoping review. Future reviews may also examine how the ethical issues reported in this review are similar or different to those reported in research with minors in other fields.

5. Conclusions

This scoping review identified the common ethical issues in bereavement research involving minors. These issues tend to fall under the principles of informed consent, risks and potential benefits, and protection of privacy and confidentiality. The review also identified the methods used by researchers in addressing these issues. Going forward, the scoping review could be used by bereavement researchers when designing their studies and to address ethical issues as they arise. The review can also be used to support the decisions researchers make to a human research ethics board, thus contributing to the literature on this subfield.

Summary of the principles and themes of the Australian National Statement on Ethical Conduct in Human Research 2007 (Updated 2018) [ 23 ].

Summary of peer-reviewed literature.

Summary of grey literature.

Funding Statement

K.A. was supported by a National Health and Medical Research Council Early Career Fellowship (GNT1157796). The funder had no role in the design of the study, in the collection, analyses, or interpretation of data, in the writing of the manuscript, or in the decision to publish the results.

Author Contributions

Conceptualization, A.E.S.P., K.K. and K.A.; methodology, A.E.S.P., K.K. and K.A.; software, A.E.S.P.; validation, K.K. and K.A.; formal analysis, A.E.S.P. and K.A.; investigation, A.E.S.P.; data curation, A.E.S.P. and K.A.; writing—original draft preparation, A.E.S.P.; writing—review and editing, A.E.S.P., K.K. and K.A.; supervision, K.K. and K.A.; project administration, K.A. All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement

Not applicable.

Informed Consent Statement

Data availability statement, conflicts of interest.

The authors declare no conflict of interest.

Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Dissertations / Theses on the topic 'Bereavement Death Grief therapy'

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Wise, Joan Catherine. "Bereavement interventions a meta-analysis /." Online full text .pdf document, available to Fuller patrons only, 2003. http://www.tren.com.

Weed, Latricia Deane. "The meaning of the death of an adult child to an elder a phenomenological investigation /." Full text available online (restricted access), 2004. http://images.lib.monash.edu.au/ts/theses/Weed.pdf.

Wieruszowski, Leanne Clare. "The experiences of adolescents dealing with parental loss through death." Diss., Pretoria : [s.n.], 2008. http://upetd.up.ac.za/thesis/available/etd-01092009-165934.

Brown, Emily Margaret. "The Application of Emotionally Focused Therapy in Treating Couples who have Experienced the Death of a Child: A Grounded Study for the EFT Therapist." Thesis, Virginia Tech, 2016. http://hdl.handle.net/10919/80906.

Niestrath, Sean. "As those who have hope a Christian constructive approach to grieving death losses among members of the East Main Church of Christ, Kalamazoo, Michigan /." Abilene, TX : Abilene Christian University, 2007. http://dx.doi.org/10.2986/tren.050-0154.

Lowson, Shona. "Sacred memories : creative art therapy for children in grief : a research paper submitted to the Victoria University of Wellington in partial fulfilment of the requirements for the degree of Master of Arts (Applied) in Nursing /." ResearchArchive@Victoria e-Thesis, 2004. http://hdl.handle.net/10063/67.

Finocan, Gillian M. "Grieving the death of a loved one a performative writing approach for understanding the power of dreams /." Oxford, Ohio : Miami University, 2009. http://rave.ohiolink.edu/etdc/view?acc%5Fnum=miami1249521118.

Elliot, Julie L. "Adults' recollections of bereavement in childhood." Thesis, Cardiff University, 1993. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.245236.

Cheung, Man-ling. "The role of religious attributions in coping with bereavement." Hong Kong : University of Hong Kong, 1995. http://sunzi.lib.hku.hk/hkuto/record.jsp?B19470551.

Tsang, Wai-hung Wallace. "Attitudes towards 'life' and 'death and dying' in Chinese bereaved widows : implications for bereavement work in Hong Kong /." Hong Kong : University of Hong Kong, 1996. http://sunzi.lib.hku.hk/hkuto/record.jsp?B19470198.

Cutcliffe, John R. "The inspiration of hope in bereavement counselling." Thesis, University of Sheffield, 2000. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.484254.

Ertmann, Jacqueline. "Death, grief, bereavement, and transformation: A curriculum for the art room." Thesis, The University of Arizona, 2003. http://hdl.handle.net/10150/278812.

Foster, Ryan D. "Effects of a Near-Death Experience Learning Module on Grief." Thesis, University of North Texas, 2010. https://digital.library.unt.edu/ark:/67531/metadc30455/.

Clark, Deborah. "The experience of losing a child through death." Online full text .pdf document, available to Fuller patrons only, 2003. http://www.tren.com.

Christensen, Marsha A. "Women losing women narratives of grief over same-sex partner death /." Laramie, Wyo. : University of Wyoming, 2008. http://proquest.umi.com/pqdweb?did=1597613711&sid=1&Fmt=2&clientId=18949&RQT=309&VName=PQD.

Hunt, Sonya. "Bereaved parents : central issues of bereavement." Thesis, Link to the online version, 2007. http://hdl.handle.net/10019/640.

Sundfor-Terry, Annette E. "A semi-structured therapeutic interview and rating scales for the assessment of bereavement with recommendations and interventions." Theological Research Exchange Network (TREN), 2006. http://www.tren.com/search.cfm?p088-0177.

Lohan, Janet. "Parents' perceptions of family functioning and sibling grief in families who have experienced the violent death of an adolescent or young adult child /." Thesis, Connect to this title online; UW restricted, 1998. http://hdl.handle.net/1773/7229.

Sennett, Margot Jane. "A phenomenological explication of the experience of having one's bereavement denied by others." Thesis, Rhodes University, 1988. http://hdl.handle.net/10962/d1004527.

Callison, Eugenia Jarosz. "Harbor of hope." Theological Research Exchange Network (TREN) Theological Research Exchange Network (TREN) Access this title online, 2006. http://www.tren.com.

Strange, Julie-Marie. "This mortal coil : death and bereavement in working-class culture, c.1880-1914." Thesis, University of Liverpool, 2000. http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.343933.

Barr, Peter. "Guilt, shame, and grief: an empirical study of perinatal bereavement." University of Sydney. Centre for Behavioural Sciences, 2003. http://hdl.handle.net/2123/602.

Árnason, Arnar. "'Feel the pain' : death, grief and bereavement counselling in the North East of England." Thesis, Durham University, 1998. http://etheses.dur.ac.uk/1110/.

Spiegelberg, Mandi. "Coping with loss supporting school-aged children who are dealing with bereavement /." Menomonie, WI : University of Wisconsin--Stout, 2006. http://www.uwstout.edu/lib/thesis/2006/2006spiegelbergm.pdf.

Nyanjaya, Ananias Kumbuyo. "A pastoral approach to suppression of the grief process among males leading to death a reflection on an African perspective in Zimbabwe /." Pretoria : [s.n.], 2006. http://upetd.up.ac.za/thesis/available/etd-10302007-153911/.

McRitchie, Robyn. "How do adults with mild learning disabilities experience bereavement and grief? : a qualitative exploration." Thesis, University of Edinburgh, 2012. http://hdl.handle.net/1842/6297.

Stone, Joseph B. "Traditional and Contemporary Lakota Death, Dying, Grief, and Bereavement Beliefs and Practices: A Qualitative Study." DigitalCommons@USU, 1998. https://digitalcommons.usu.edu/etd/4055.

Hillis, Juliana. "Digitalizing Death: A Study of the Influence of Social Media on the Grieving Process." Thesis, Boston College, 2018. http://hdl.handle.net/2345/bc-ir:108016.

Kohut, Mary K. "Assessment of Expressive Therapies in Summer Bereavement Camps." Ursuline College / OhioLINK, 2008. http://rave.ohiolink.edu/etdc/view?acc_num=urs1210946513.

Burks, Ronald Leslie. "Equipping a grief ministry team in the local church a multidimensional approach /." Theological Research Exchange Network (TREN), 1996. http://www.tren.com.

Gilvin, Michael David. "A Qualitative Look at how Sibling Bereavement From Unnatural Causes of Death Affects Surviving Siblings." ScholarWorks, 2018. https://scholarworks.waldenu.edu/dissertations/4517.

Wiggins, Madison G. "Bereavement Support for Children in Schools." Digital Commons @ East Tennessee State University, 2020. https://dc.etsu.edu/secfr-conf/2020/schedule/17.

Elderkin, Anita. "Resilience or Recovery: A Phenomenological Investigation Into Parental Bereavement." ScholarWorks, 2017. https://scholarworks.waldenu.edu/dissertations/3603.

Cholette, Meghan Elizabeth. "Exploring the Meaning of the Paternal Experience of Perinatal Loss: A Phenomenological Study." Diss., The University of Arizona, 2012. http://hdl.handle.net/10150/265363.

Sirrine, Erica Hill. "Continuing Attachment Bonds to the Deceased: A Study of Bereaved Youth and Their Caregivers." Scholar Commons, 2013. http://scholarcommons.usf.edu/etd/4844.

Höglund, Alexandra, and Tina Bronzwinge. "Sorgereaktioner efter dödsfall med fokus på sjuksköterskans stöd : En litteraturstudie." Thesis, Linnéuniversitetet, Institutionen för hälso- och vårdvetenskap (HV), 2021. http://urn.kb.se/resolve?urn=urn:nbn:se:lnu:diva-104311.

Carmean, Seana Ann. "Suicide postvention how can we improve existing models? : a project based upon an independent investigation /." Click here for text online. Smith College School for Social Work website, 2007. http://hdl.handle.net/10090/971.

Smith, Loni A. "Children and parental death effects and school-based interventions /." Online version, 2009. http://www.uwstout.edu/lib/thesis/2009/2009smithl.pdf.

Fulbrook, Thomas Brian. "Bereavement and Parents Who Have Experienced the Sudden Death of a Child." ScholarWorks, 2015. https://scholarworks.waldenu.edu/dissertations/1847.

Warren-Marlatt, Rebeccah. "The long-term effects of childhood bereavement: A contextual analysis." CSUSB ScholarWorks, 1993. https://scholarworks.lib.csusb.edu/etd-project/490.

Turnbull, Frances L. "Childhood bereavement and its long-term sequelae: a phenomenological investigation of adjustment to early parent death." Thesis, Boston University, 1991. https://hdl.handle.net/2144/37172.

Scheepers, Lucas Johannes. ""Giving voice" to the bereaved : family grief and resilience after a child has died." Thesis, Nelson Mandela Metropolitan University, 2013. http://hdl.handle.net/10948/d1021096.

Kraus, Robert W. "Developing a grief recovery program at Victory Hills Baptist Church of Kansas City, Kansas." Online full text .pdf document, available to Fuller patrons only, 2003. http://www.tren.com.

McCall, Marsha Joan. "Perceived causal attributions and their relationship to grief intensity in early miscarriage." Thesis, University of British Columbia, 1987. http://hdl.handle.net/2429/27720.

Hartzler, Rachel Nafziger. "Loss as an invitation to transformation living well following the death of a spouse /." Theological Research Exchange Network (TREN) Access this title online, 2004. http://www.tren.com.

Walker, Karen Ann. "The experiences of therapists and bereaved clients of using an acceptance and commitment therapy approach to grief." Thesis, University of Wolverhampton, 2013. http://hdl.handle.net/2436/297423.

Cook, Jennifer S. "The assessment of a relational curriculum for the spiritual formation of grieving mothers." Ashland, OH : Ashland Theological Seminary, 2008. http://dx.doi.org/10.2986/tren.028-0284.

Webb-Ferebee, Kelly. "Expressive Arts Therapy with Bereaved Families." Thesis, University of North Texas, 2001. https://digital.library.unt.edu/ark:/67531/metadc2861/.

McKessar, Anna Meredith. "Five hours with Raja ethics and the documentary interview : an exegesis submitted to Auckland University of Technology in partial fulfilment of the requirements for the degree of Master of Communication Studies (MCS), 2009 /." Click here to access this resource online, 2009. http://hdl.handle.net/10292/685.

Sanders, Sharon Lee. "Does Postformal Thinking Facilitate Recovery From Grief and Promote Well-Being During Bereavement In Widows?" CSUSB ScholarWorks, 2001. https://scholarworks.lib.csusb.edu/etd-project/2295.

‘The Greatest Hits’ Review: Music Makes the Heart Go Round in Clunky Remix of Better Rom-Coms

Lucy Boynton plays a woman launched back into a past relationship every time she hears a familiar song in Ned Benson's shallow tribute to the power of music to define key moments in our lives.

By Peter Debruge

Peter Debruge

Chief Film Critic

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Music has an almost magical way of transporting us back to the moment in our lives when we heard it: the pop song that underscored your first kiss, the one that played at your graduation and so on. In mopey, dopey YA weepie “ The Greatest Hits ,” writer-director Ned Benson takes that idea as literally as possible, treating specific tunes as triggers that launch Harriet (Lucy Boynton) back into her past, blowing her — like that seated guy in the classic Maxell campaign — into the tragic former relationship with hunky Max (square-jawed future Superman David Corenswet), who died in a car crash.

It all seems like a lot of effort just to make this high-concept premise work, with certain details — like, how Harriet can hear conversations when her hearing is muffled — left maddeningly unexplained. You’d also think she’d be a bit more careful behind the wheel after surviving a deadly car accident. This is a love story; it’s not meant to be logical. Still, such a premise lives or dies by its execution, and apart from the pretty pixie flares that swarm the screen each time Harriet is about to sonic-zoom, “The Greatest Hits” feels like the remainder-bin version of better love stories.

Though we’ve waited more than a decade to see what “The Disappearance of Eleanor Rigby” director Benson would do next, everything about that big-swing debut (a love story split into “his” and “hers” perspectives, then braided back together) suggested he was capable of something far less conventional than this. It feels like a cynical play from such a romantic-minded director, though it does have a point: Harriet’s trepidatious approach to music-filled spaces is consistent with how emotionally damaged individuals cautiously reemerge into social environments, where everything — smells, textures, certain foods — can bring intense feelings flooding back.

Because certain songs send her back to the moments when she first heard them, Harriet hopes that she can find the one missing musical cue that will allow her to change the past and save Max’s life. The guy looks like movie-star material, but makes for a rather banal boyfriend, judging by the generic-looking memories sampled (flirting at a concert, splashing together at the beach). She appears to be living in an allergy-medicine commercial, which means that audiences clue in long before Harriet does that the movie wants her to move on.

Enter David (Justin H. Min), a goofy-cute potential suitor who turns up at one of her grief support meetings. David’s parents recently died, and he’s dealing with his own feelings, but for some reason (which Boynton’s performance doesn’t convey), it seems like a good idea to hit on the girl with the headphones. While she tries to block out unwanted oldies, Benson orchestrates ways for Harriet and David to bond in relation to new music: at the record store, attending a dance party DJed by her gay best friend (Austin Crute), etc.

So much about these scenes feels forced, as if Benson is presenting a thesis on how contemporary humans relate to music. And yet, most people don’t remember the time and place of every song they’ve ever heard. When they find a favorite, that tune gets played lots of times. The selections in “The Greatest Hits” run the gamut from indie rock to instrumentals (with random choices, like “Pump Up the Jam,” inexplicably thrown in). Obviously, these songs mean something to Harriet — and maybe Benson as well — but they don’t hold any significance to us, which makes for an incoherently eclectic soundtrack.

After premiering at the SXSW film festival, “The Greatest Hits” will receive a limited theatrical release on April 5, 2024, then stream on Hulu beginning April 12.

Reviewed at SXSW (Narrative Spotlight), March 14, 2024. MPA Rating: PG-13. Running time: 94 MIN.

• Production: A Hulu release of a Searchlight Pictures Presentation of a Groundswell, Flying Point production. Producers: Michael London, Shannon Gaulding, Stephanie Davis, Cassandra Kulukundis, Ned Benson. Executive producers: Hilton Smith, Stone Douglass.
• Crew: Director, writer: Ned Benson. Camera: Chung-Hoon Chung. Editor: Saira Haider. Music: Ryan Lott.
• With: Lucy Boynton, Justin H. Min, David Corenswet, Austin Crute.

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