“Ask us anything”: A framework for understanding bereaved children’s questions about illness,dying,and grief

Prior research

To the authors’ knowledge, two prior studies offer foundational analyses of children’s anonymous questions about death. The first study, by Thompson and Payne, ¹² categorized 123 questions by bereaved children for a doctor, asked in the context of a grief support camp in the UK. The aims of these questions were grouped into themes, such as cause of death, dead body, and grieving. They proposed a communication model, based on their doctors’ experiences answering these questions, to guide responses to children’s questions with phases of validation, reflection, and description. The second related work, by Joy et al., ² analyzed 213 questions submitted by 5–12-year-olds about death and grief in the context of an Australian day-camp. These authors identified five thematic categories: causes and processes of death, human intervention, managing grief, the meaning of life and death, and after death. The current study expands on this early body of work both in depth (i.e., by exploring any questions grieving children may want to ask), and in breadth (i.e., by examining 15 years of data, across 710 questions, from campers aged 6-17 years old). This study also brings a unique lens, grounded in strengthening grief and death literacy for people supporting young grievers. Further, giving young people the opportunity to ask anything may showcase various elements of curiosity as experiencing the death of someone important can raise questions about many aspects of a young person’s life.

Study lens

This study aligns itself with a growing body of literature advocating for death and grief literate responses in relation to children’s grief and bereavement. ⁹ Whereas death literacy refers to the “knowledge and skills that make it possible to gain access to, understand, and act upon end-of-life and death care options”, ¹³ grief literacy represents a movement seeking to increase knowledge about grief in order to grow capacity of the public and professionals to acknowledge and respond to this experience. ¹⁴ In the context of childhood, death literacy can involve exploring young people’s understandings of death, causes and processes, and ideas about what happens to a person and their body when they are dying, and after death. When considered together, death literacy and grief literacy in childhood aims to equip people with knowledge and skills about death and grief, as well as growing their capacity to acknowledge and respond to such experiences. Through this lens, everybody has a role to play in building a supportive community around grieving children. Some ways this can be mobilized include: learning words and concepts to help children understand serious illnesses and injuries, dying, death and related processes and customs, as well as to make sense of and express their own grief experiences; creating a listening environment that promotes connection and honesty; and promoting better community support. ⁹

One widely used approach to engaging with grieving young people’s questions is the concept of the ‘Cs,’ which refer to commonly expressed questions and concerns by children who are grieving the serious illness, dying, or death of someone important to them. ¹⁵ The concept of the Cs was originally published fifteen years ago as a practice-based approach to engaging with young grievers about matters that affect them. This concept was informed by the collective clinical experiences of the children’s grief counsellors and therapists who initially led the children’s grief camp examined in this study, alongside individual, family, and peer support programming, in a community-based organization. ¹⁵ The initial Cs included three main questions, centered around: catch (e.g., “Is this contagious?”); cause (e.g., “Is it my fault?”); and care (e.g., “who will take care of me?”). Over time and informed by colleagues practicing in various grief-focused settings, the Cs have expanded to include: condition (e.g., “what’s this disease called and how does it work?”), cure (e.g., “why couldn’t anyone save them?”), and connection (e.g., “is he still my dad?”). The Cs continue to be widely used as an approach to guide health and psychosocial care providers in conversations with grieving young people, including Ask Us Anything sessions, and as the foundation for many resources for parents, teachers, and other in the grieving child’s circle of care.^16,17

Design

This qualitative study involved the secondary analysis of data generated by children and youth who experienced the death of someone important to them (herein referred to as ‘bereaved children’), in the form of anonymous questions posed to a team of health and psychosocial clinicians. Thematic analysis was selected because of its suitability with various forms of qualitative data (e.g., children’s written questions) and employability within a range of epistemological positions. ¹⁸ Collectively, the research team brings a range of perspectives and substantial experience with navigating grieving children’s questions, both in bereavement camp settings and otherwise. The team’s professional backgrounds in child life, palliative care, pediatric medicine, and nursing were greatly enhanced by the engagement of two university students, one of whom attended camp as a volunteer in the course of this study, while the other had attended as a young camper and returned as a leader-in-training and a volunteer. It is the position of all authors that these identities contribute to a proximity and familiarity that afford them important perspectives on grief and supporting grievers. Coming from constructivist and pragmatic epistemologies, the authors were sensitized by intimate familiarity with camp and campers’ questions and practiced reflexivity throughout collaborative analysis sessions to avoid making assumptions about the underlying meanings of individual questions where multiple possibilities existed (see Analytic Approach).

Written informed consent for the collection of campers’ art, written work, and photographs for the program promotion or evaluation research, was included in the consenting process for camp. All questions submitted and analyzed in this study were obtained anonymously. In consultation with the local Community Research Ethics Board it was determined that their review was not required based on the Tri-Council Policy Statement (TCPS 2), which states that “REB review is not required for research that relies exclusively on secondary use of anonymous information […] so long as the process of data linkage or recording or dissemination of results does not generate identifiable information”. ¹⁶ Campers submitted their questions on individual slips of paper that did not include their name, age, or any information besides their questions, and as such there was no possibility of linking this secondary, anonymous data to individuals, or generating identifiable information based on the submitted questions. Therefore, the local Community Research Ethics Board determined that formal ethics review of this study was not warranted. ¹⁹ Photographs of questions included in this article were obtained from a cohort where all campers consented to media.

Setting and participants

The bereavement camp where this study’s questions were obtained is an annual, free, weekend-long program facilitated by clinicians and trained volunteers, for children aged 5–17 who have experienced the death of a close family member (i.e., any familial relationship or cause of death). Approximately 110 campers typically attend per year, garnering the camp over 1,500 participants since 2009. No restrictions to attendance at camp currently exist regarding time since the death or cause of death.

Every year, each cabin is equipped with an accessible envelope for campers to submit their anonymous Ask Us Anything questions. On the final day of camp, campers are divided into groups to meet with health and psychosocial clinicians who have collected the questions in advance and collaborated to prepare responses. All campers attend these sessions, however, submitting a question is optional.

Although extensive demographic data is collected by camp organizers, none of those details are associated with the specific questions that are submitted for Ask Us Anything since the activity is anonymous. Therefore, question-level demographic information is unknown in this study.

Analytic approach

In order to unpack campers’ questions and highlight what it is they might want to know, elements of both deductive and inductive thematic analysis were employed.^20,21 This approach involved deductive coding based on an a priori framework (the concept of the Cs), as well as inductively assigning codes to segments of data that reflect a ‘new’ theme. ²¹ This approach helped answer this study’s research questions by allowing practice-based concepts (the Cs) to inform deductive thematic analysis, while also allowing for themes to emerge directly through the data using inductive coding. This type of analysis brings value by generating new knowledge, which not only consists in the ‘discovery’ of the previously unknown, but also the reconceptualization of (whether that be affirming or reconfiguring) what is presently understood. ²² In other words, the Cs, a practice-based approach to bereaved children’s questions, might reflect core elements of children’s questions; and their questions might also go beyond the Cs.

After becoming familiar with the data through repeated readings and discussing patterns and recurring themes, the research team began a collaborative, deductive process by exploring the alignment of children’s questions with the Cs.^21,22 Each question in the spreadsheet was discussed and assigned a label for any of the Cs (condition, cause, catch, cure, care, connection) that were reflected.

Labelling some questions was straightforward given the similarity between the wording of the question and one of the Cs, e.g., “What causes a brain to bleed?” —> cause. Other questions whose underlying concerns were less clear required a greater depth of discussion, considering multiple possible interpretations. For example, the question, “If someone in your family or parent has cancer can you also have it?” may have reflected a camper’s worry about cancer being contagious, or a genetic component heightening their risk, or that another family member may coincidentally also have cancer. In these instances, questions were assigned each of the potential codes that were identified, e.g. “contagious,” “assessing risk,” “vulnerability,” listing them in multiple columns in the study-specific spreadsheet to capture varied possibilities.^23,24 A constant comparative approach was used to identify themes and patterns of meaning, defining and redefining codes, and revising the codebook.^19,23

In an effort to discern the subgroups of questions across the Cs, our team engaged in further inductive coding using an additional column in the spreadsheet to code each question according to its explicit focus. Tables and mind maps were also created to organize and visualize relationships between codes and themes as part of this iterative analytic process.

Ultimately, this process led to the creation of six overarching themes that were used to organize the data based on the focus of campers’ questions: human bodies (i.e., the purpose, function, and processes of different body parts), conditions (i.e., mental and physical conditions), dying and death (i.e., the process of dying and what happens after death), grief (i.e., their own and others’ experiences), existential (i.e., spirituality, meaning, moral, or ethical questions), and personal/relational (i.e., questions about themselves, relationships, or the person responding). These were considered to be ‘semantic’ level themes as they relate to the explicit focus of the written questions, rather than interpreting or theorizing their meaning. ¹⁷

By contrast, the Cs were conceptualized as ‘latent’ level themes as each C reflects an underlying idea, or function of the question. The Cs describe an interpretative layer (what the child is seeking through the question), or a “central organizing concept,” expressed in different ways in each of the campers’ questions.^15,17 For the C that is labelled 'condition,' we reviewed the data and distinguished between questions about different conditions (which were thus assigned the semantic level code, 'condition') versus questions that sought to understand how something works (which applied to body parts, various medical or mental health conditions, as well as aspects of death and grief). Therefore, six latent themes were generated, reflecting the C’s: how it works; can I catch it; what caused it; can it be cured; care for self/others; and connecting with others.

Recognizing bereaved children’s questions

Grieving children have a broad range of thoughtful and emotionally salient questions about human bodies, illness, treatment, dying, death, and grief. Although this study did not collect demographic information associated with individual questions, various writing styles and language proficiency levels suggest that many children (perhaps regardless of age) wonder about a range of topics. This observation contrasts with dominant views of children as incapable of grappling with abstract and existential topics.^9,23 Child developmental theories have been used to suggest that young children may lack a mature understanding of death’s finality and universality and continue to be used in clinical and social spaces as rationale for what adults imagine children can/cannot or should not know.^9,24,25 However, such developmental assumptions can obscure the diverse ways children make sense of loss. From the authors’ experience of participating in Ask Us Anything sessions, even young children can think and ask about death and grief in ways beyond what developmental models presume. Grief can affect the way that a person makes sense of things; it is not always a question of understanding (i.e., a child being ‘incapable’ of grasping certain information) but a question about how grief demands grappling with a world that looks different than was known before. Abstract concepts like finality, causality, irreversibility, and universality are hard (and sometimes impossible) at any age. The questions evidenced in this study suggest that bereaved children wonder about a myriad of significant things as they navigate grief. While children’s understandings of death and grief have largely been approached as functions of cognitive and emotional development, we propose that grieving children’s questions should instead be seen as morally meaningful expressions of their aspirations and concerns as they navigate a world that feels different than it did before.^26,27

During the collaborative coding process, the research team came to recognize that children would frequently submit questions of seemingly varying intensity together (see Figure 2, Figure 3, and Figure 4). In clinical practice, this has been described as “puddle jumping” wherein children might show deep sorrow in one moment and laugh or play in the next.^26,27 This variety in expression also came through in questions submitted. For instance, one camper submitted five questions, appearing quite different from one another, on the same slip of paper (seen below in Figure 4): “(1) How can I understand grif? ² Why do I need to use cream for my face? ³ How do I now if I am grifing ⁴ What cream can I use on my face? ⁵ How do people get cancer??” For the research team, this excerpt (along with similar-natured excerpts shown under Figure 2 and Figure 3) suggests that grieving children have the capacity to grieve while simultaneously experiencing other moments reflective of everyday childhood. The back and forth in intensity of questions seen in these excerpts suggests alignment with the concept of puddle jumping and similar observations elaborated in adult grief theories,^28,29 suggesting, at their most fundamental level, that people (including young people) might oscillate between ways of attending to, and expressing their grief.OPEN IN VIEWER

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Figure 3.

Example of camper questions submitted: on choice of profession and cancer.

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Figure 4.

Example of camper questions submitted: on grief, cancer, and face cream.

Caution is required when exploring these anonymous questions, because only the child may know the root of their concern. The examination of anonymous questions does not allow deeper probing. It is possible that the child from Figure 4 had a person who mattered to them die from skin cancer, and that is their reason for asking about face cream. Alternatively, it is possible that the child was talking about face cream with their fellow campers and had this topic on their mind. Without knowing this, no matter the apparent levity of a question, every question should be treated as a legitimate wonder that merits acknowledgment and exploration.

Responding to bereaved children’s questions

All bereaved children’s questions deserve to be taken seriously. Insights about what bereaved children want to know about illness, death, and grief, can be drawn from the questions they ask about these topics. Throughout the coding process, the research team reflected on the range of possible understandings, worries, emotions, and beliefs that could underlie and be expressed in each of these anonymous questions. Sensitized by collective personal and clinical experiences with childhood grief, the team recognized that questions contained informational, emotional, and existential components; since it is not possible to know for certain which the child may be seeking, each component should be meaningfully addressed in response. Returning to related studies on bereaved children’s questions,^10,12 the proposed framework builds on prior work by highlighting a range of concerns about anything grieving young people find meaningful to ask. Further, this study examines not only what children ask about (focus) but what they may be seeking through their questions (function). In doing so, this framework offers a practical interpretive tool to support caring adults to recognize children’s underlying concerns. In the work by Thompson and Payne, ¹² the authors also identified three key pieces doctors in their camp mobilized in their responses to questions: validation, reflection, and description. While the present study did not examine responses to children’s questions, the conceptual framework developed as a result of this study suggests that these elements of responding matter.

Questions could invite a variety of responses: informational aspects of questions may invite more ‘concrete’ responses, whereas responses to emotional and existential elements could feel less like definitive answers. In the experiences of the research team, responses to emotional and existential questions offer support and validation for difficult emotions, encouragement to wonder together, and offer a sense of community and compassion in the face of uncertainty and unanswerable questions. This expands on Thomson and Payne’s ¹² description phase which focused on informational needs by providing explanations about the body, illness, and death. Extending their proposed “staging” or stepwise approach, the proposed framework can be used to guide an additional phase of exploration, including acknowledgment and validation of the emotional and existential aspects of children’s questions, as well as wondering together, after providing concrete information that may be relevant to the description phase.

For instance, “Why do people have to die?” could invite responding to two or more elements: an informational element about why human bodies cannot live forever, that every living being is made up of cells and systems that eventually deteriorate; as well as an emotional element, acknowledging that understanding how bodies work and that they cannot physically live forever does not ease the grief and longing for the person who died. The latter may not feel like an adequate ‘answer’ to significant feelings and existential questions like, “but why?” however such a response can still address the child’s question because it validates the feelings that may come with the question (e.g., sadness, fear, helplessness, confusion) and affirms that it is natural to grieve endings and to grapple with significant questions like this.

Figure 5 and Figure 6 provide visual illustrations of how the framework can be used to help situate a child’s question, consider its focus and function, identify the informational and potential existential or emotional needs, and inform a supportive response. Figure 5 depicts a relatively existential question and a response that progresses from concrete information sharing at the intersection of the themes, how it works and dying and death, before shifting from left to right towards abstract, existential ideas. In contrast, the question illustrated in Figure 6 is more informational, at the intersection of how it works and condition. Beginning with a response to the semantic and then latent aspects of the question as posed, arrows suggest a possible progression of responses and exploratory questions from the top down, to inviting subsequent, related questions that children may wonder about.OPEN IN VIEWER

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Figure 6.

Example of camper question, “How does ALS affect you?” and possible responses informed by the framework.

Caregivers and providers should recognize children’s questions as opportunities for connection, making sense of the world, and examining what feels significant to the person. More than offering ‘answers,’ the process of inviting and exploring grieving children’s questions demonstrates the importance of listening and responding. Sometimes there is no definite answer to be given, and the best thing one can do is to simply respond by bearing witness and acknowledging the magnitude of what this child is holding. Inviting bereaved children’s questions and responding to their concerns is meaningful even if it feels like there is no ‘right’ answer.

Practical implications

Caregivers and providers can use this framework to prepare for grief-related conversations with children, recognize possible questions, and explore possible underlying emotional or informational needs. This matrix enables providers to consider and explore deeper concerns behind children’s questions. The following implications have arisen from this study:

• Caregivers and providers caring for dying people and their families need to be aware that bereaved children of all ages have various questions, and all their questions merit to be taken seriously.

Limitations

This study provides, to the authors’ knowledge, the most comprehensive accounting of grieving children’s questions (710 questions) alongside a robust and reflexive analytic exploration by a group of health and psychosocial care providers and young adults with camp experience. Nonetheless, this study might be considered limited by the absence of demographic data linked with individual questions, which prevents exploring variations or trends in the questions asked by children depending on their age, cultural, ethnic, or spiritual contexts, cause of death time since death, or relationship to the person who died. Further, children who attended this bereavement camp are not representative of all bereaved children, particularly those who face sociopolitical, geographic, demographic, and other barriers to accessing supports, including stigma that may preclude families from sending a child to a bereavement camp. ³¹ Additionally, follow-up questions asked during sessions were not recorded.

Future studies should invest focused efforts in connecting with bereaved children and young people who may not have access to camp or similar grief supports. As well, further study is needed to understand how children’s questions may be influenced by variables related to demographics and social locations, as well as the deaths they have experienced. The aim of the present study is not to draw conclusions or generalize about children’s grief experiences, but rather to inform and guide adults’ exploratory dialogues with grieving children, in order for them to invite and respond to children’s unique questions, concerns, perceptions and priorities with care and compassion. Future research should explore grieving children and young people’s perceptions and experiences of communication about these questions, including discussion of the informational, emotional, existential, and relational elements.