“Understanding why she had to leave me”: The roles of religion and spirituality in narratives of parents grieving the loss of a child to cancer

Abstract

Religion and spirituality often influence how people experience illness, death, and grief. The roles of religion and spirituality for parents who have lost a child to cancer remain underexplored. This study aimed to describe how cancer-bereaved parents talk about religion and spirituality when reflecting on their experiences. Participants whose children died of cancer one to six years prior to participation completed a one-on-one semi-structured interview. Interview transcripts underwent qualitative analysis. Content pertaining to religion and/or spirituality underwent subsequent in-depth analysis to identify themes. Of 30 interviews analyzed, 28 contained religion/spirituality content. Four themes arose: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious and spiritual interactions within the medical community. The absence of supports for religious and spiritual needs represents a gap in bereavement care. Future work should clarify needs and explore potential interventions.

Introduction

The death of a child is a tragic, seminal event in the life of a parent. Religion and spirituality often play integral roles in how families experience illness, death, and bereavement (Park & Halifax, 2021). Religion relates to beliefs, practices, rituals, communities, and conventions that may inform decisions, practices, and attitudes about death and grief (Jonas et al., 2018; Zinnbauer & Pargament, 2005). Spirituality more broadly encompasses how a person seeks meaning, purpose, and connection (to others, to nature, to God, etc.), which becomes especially relevant in the setting of illness and loss (Norris et al., 2019; Zinnbauer & Pargament, 2005). Religion and spirituality can both impact and be impacted by bereavement. For some, religion and spirituality are a source of strength and comfort; for others, religious or spiritual factors contribute to distress and complicated grief (Morris et al., 2019). A child’s death can be especially life-altering and paradigm shifting, in part because it upsets the natural expectation that parents will outlive their children. As parents adjust to a new reality in the wake of profound loss, their religiosity or spirituality may grow, diminish, or evolve (Jonas et al., 2018; Rudaz et al., 2020).

Despite the known interplay between religion, spirituality, and bereavement, few interventions have focused on improving religious and spiritual support for grieving parents (Pohlkamp et al., 2021, Tan et al., 2021). Additionally, health care clinicians are rarely trained to offer spiritual or religious support or anticipatory guidance (O’Brien et al., 2019, Wenham et al., 2021). Understanding how religion and spirituality relate to parents’ experiences is prerequisite to identifying and addressing how medical and psychosocial teams can better support parents at the end of a child’s life and throughout bereavement. Specifically, the role of religion and spirituality in the experience of parents grieving the loss of a child to cancer remains underexplored. In this qualitative study, we aimed to describe how cancer-bereaved parents talk about religion & spirituality when reflecting on their child’s illness experience and the family’s subsequent bereavement.

Methods

This qualitative descriptive study is part of a larger mixed methods investigation of grief and bereavement experiences among parents of children who died of cancer. The bereaved parent study (BPS) aimed to better understand factors influencing parents’ bereavement processes, with the dual goals of assessing the current landscape of bereavement care received by families after the death of a child from cancer and identifying gaps in bereavement support (methods previously described in Robertson Eden et al., 2023). This study was approved by the Institutional Review Board at St. Jude Children’s Research Hospital. Characteristics and qualifications for the research team are compiled in Table 1. The findings reported in this paper were derived by a hybrid approach that integrated content and thematic analyses of qualitative BPS data (Doyle et al., 2020). We present study methods and findings specific to this analysis following the Consolidated Criteria for Reporting Qualitative Research checklist (COREQ, Supplemental Document 1) (Tong et al., 2007).

Table 1. Research team attributes and qualifications.

Initials	Researcher position, qualifications, and demographic characteristics.
A.K.S.	Female white and Native American physician with a MD and experience in qualitative research methodology and clinical training and practice in pediatric hematology-oncology and hospice and palliative medicine.
M.T.	Female Latina medical student with a BS in Biology and Family Science.
Y.Y.	Female Asian medical student, BA in public health and medical humanities.
C.T.	Male Latino clinical psychologist with a PhD and expertise in grief and bereavement and qualitative research methodology.
L.J.B.	Cisgender female physician with MD and Master’s in Public Health degrees, experience and training in qualitative methodologies, and clinical training and practice in pediatric hematology-oncology.
J.N.B.	Male white physician-scientist with a MD, clinical and research expertise related to grief and bereavement in pediatric oncology, and clinical training and practice in pediatric hematology-oncology and hospice and palliative medicine.
H.S.P.	Female white physician with a MD, expertise in integrative medicine and communication training with bereaved parent educators, and clinical training and practice in pediatric hematology-oncology, hospice and palliative medicine, and integrative medicine.
E.C.K.	Female white physician-scientist with a MD, a Master’s in Public Health, graduate-level training in qualitative research methodology with a focus on communication science, experience with grief and bereavement research, and clinical training and practice in pediatric hematology-oncology and hospice and palliative medicine.

^* Of note, the researchers performing interviews were not involved in the clinical care of any of the participants’ children.

Participants

Parents were eligible for inclusion if they were ≥18 years of age, English speaking, had a child who received cancer treatment at the study institution, and their child had died 1–6 years prior to enrollment, with cause of death related to refractory cancer or cancer-related complications. This time window was chosen to include parents from varied timepoints across the early bereavement trajectory; we focused on the first 6 years after loss to minimize recall bias, and the first year of bereavement was excluded to avoid the period of acute grief after loss. Participants would be excluded and immediately referred to psychological support if they were found to have active suicidality during screening.

Recruitment and enrollment

Eligible participants and their contact information (including names, addresses, and phone numbers) were identified through collaboration with health information management services at the study institution. Parents were invited to participate via a letter that described the study and explained that the research team would contact them to assess interest. The invitation also included a postage-paid card that could be returned to opt-out of further contact. The interviewer then reached out to eligible participants by phone to determine the parent’s interest in participation. At that time, the interviewer performed a brief suicide risk assessment to ensure eligibility and assess the wellbeing of the potential participant. Informed consent was obtained from all participants. Verbal consent was documented, and a suitable time was arranged for a phone-based interview. Participants received a $25 gift card following study completion.

Data collection procedures

During the interview, participants were asked to provide demographic information (e.g., race/ethnicity, religion). Trained qualitative researchers (CT, LJB) with extensive interview experience facilitated semi-structured interviews with bereaved parents. The interview guide (Supplementary Document 2) was developed following review of the literature and iterative discussions among a multidisciplinary team of clinicians and researchers with expertise in child and family psychology, psychiatry, pediatric palliative care, and grief and bereavement. Interview prompts and probes asked parents to share about their experiences during their child’s diagnosis, treatment, and end-of-life, as well as their subsequent bereavement. Interviews were designed to last 30–90 minutes.

Interviews were conducted by phone from a private location and were audio-recorded and subsequently transcribed verbatim. Audio files and transcripts were stored securely, and confidentiality of participants was maintained by linking codes. Repeat interviews were not conducted and transcripts were not returned to participants for review. Transcripts were uploaded into MAXQDA, a software program that organizes coding and analysis processes.

Data analysis

To analyze the semi-structured interviews, a hybrid approach was used that combined an inductive approach to content analysis followed by thematic analysis targeting the phenomenon of interest (Proudfoot, 2023). MAXQDA was used to index, organize, code, and memo data across both phases of analysis. First, three researchers (HSP, YY, MT) familiarized themselves with the data, created memos across interviews, and then used memos to inform development of inductive codes to describe the data, semantically and conceptually. Specifically, memoing was used both to describe and summarize content and to document subjective and emotional responses elicited in the researchers; iterative memoing enhanced reflexive interpretation of meanings and patterns within the data, which informed code creation and refinement (Birks et al., 2008). Coding disparities were resolved through consensus building, which led to iterative modification of the codebook. Once the coding researchers agreed on the codebook, the final coding structure was applied to all transcriptions by two independent analysts (YY, MT) (McHugh, 2012).

During coding and codebook development, researchers noted a prevalent theme relating to religion, spirituality, faith, and God. This theme arose spontaneously and was not a focus of the interview questions or analysis a priori. The code “Faith” was applied to any content broadly related to this theme, as agreed upon by coding researchers. Additional researchers (AKS, ECK, HSP) conducted further nuanced in-depth analysis of Faith-coded content. This process involved extracting Faith-coded content, becoming familiar with the content and any relevant surrounding context, and creating memos extensively around this concept. Members of the research team convened regularly to discuss memos, including reflections on our countertransference as parents of young children and as individuals with diverse faith-based and spiritual practices. One researcher (AS) then led a process of thematic analysis involving iterative memoing, review of memos, and team discussion to identify broad themes. Once the researchers agreed on the overarching themes, the content was narratively summarized, synthesized, and augmented with exemplary quotes.

Results

We identified 221 eligible participants, 8 of whom opted out of communication by postcard. Attempts were made to contact all eligible participants, contact was achieved in 55 cases, and 30 parents completed interviews (Figure 1). Interviews ranged in duration between 60 and 90 minutes, with all participants sharing experiences both from their child’s treatment and their family’s bereavement. Demographic characteristics of parents who completed interviews are presented in Table 2. Twenty-seven of 30 (90%) participants self-reported a religion, while 3 participants identified their religion as “none” or “not religious.” Among the participants who self-reported a religion, all identified with a religion or denomination under the broad umbrella of Christianity.

Figure 1. Participant recruitment process.

Table 2. Demographic characteristics of the study population.

Demographics	n (%)
Parent age
Median (Range)	42 years (33–54 years)
Child’s age at death
Median (Range)	9.5 years (1–19 years)
Race/ethnicity	(select multiple and/or free-text)
White	21 (70%)
Black	5 (17%)
Hispanic	3 (10%)
Asian	1 (3%)
Other – “Mixed”	1 (3%)
Parental role
Mother	28 (93%)
Father	2 (7%)
Religion	(self-reported, free-text)
Christian (non-denominational or not specified)	11 (37%)
Catholic	8 (27%)
Baptist	4 (13%)
Episcopalian	1 (3%)
Methodist	1 (3%)
Jehovah’s Witness	1 (3%)
Orthodox	1 (3%)
Not Religious/None	3 (10%)

Twenty-eight of 30 (93%) interview transcripts contained content coded as “faith.” The two parents who did not discuss faith during the interview self-identified with Protestant Christian denominations. Among the 3 interviews with parents who did not self-identify with a religion, all contained “faith”-coded content. On further in-depth analysis of “faith”-coded content, four core themes were identified: (1) life after death, (2) divine control, (3) evolution of faith after loss, and (4) religious & spiritual interactions within the medical community.

Theme 1: Life after death

One of the most ubiquitous themes was that the child’s spirit endures after death. Parents referenced their child going to “heaven,” being “with God” or in “God’s Kingdom,” being with “angels,” being “free of pain,” and/or being “healed” after death. When speaking specifically about the Christian concept of heaven, parents described a present belief that their child is alive and a future expectation that they will see their child again (Table 3A). Most parents also spoke more broadly about feeling an enduring connection with their child through memory, legacy, and a general spiritual closeness, using phrases like, “she lives within me” and “his spirit is sort of everywhere with you” (Table 3B). Parents often wanted their whole family to remain connected with the child, as depicted by one parent who recounted trying to comfort her surviving child during a time of grief by saying, “She’s in your heart. You have the same mom, the same dad, the same blood.” Another parent started reading books about past lives and speaking to mediums, and she spoke positively about the many ways a person’s spirit might endure beyond death, saying, “You just embrace anything positive that you can.” In many cases, beliefs about afterlife allowed parents to reframe their child’s death more positively, while still acknowledging the grief and suffering they feel from the loss.

Table 3. Quotes representing Theme 1: Life after death.

Sub-theme	Exemplary quotes
A) Heaven	Belief in heaven described as a source of hope & comfort “What we know to be true is that [our child] is alive. We will see him again. He is with the Lord right now. He has no more pain. His body is perfect. It’s just the way it was intended to be …we have that hope of seeing him again.” “I definitely believe that there is another world that continues on after this one and I think, as a grieving parent, most people feel that way. I think it’s a way of helping you heal. It feels somewhat at peace at some point with what has happened, knowing that he’s carried on to another world. And I think coming to that understanding, as strange as that may sound to some people, I don’t know, it provides me comfort…It’s just a feeling, I think, more than anything, at least with me. I don’t know. It’s hard to explain” Belief in heaven described as a means of denial “I would say the first 6 months to a year was kind of my denial phase…I really had convinced myself that she was either going to come back, or I was going to die and meet her in heaven, or Jesus was going to come back and I would see her then. I really had convinced myself that it was right around the corner. ‘I’m going to see her soon, guys…Don’t worry, she’s coming back.’”
B) Enduring connections	Feeling connected to child “I just felt complete emptiness after he first passed, but now I feel him with me. I think that gives me a lot of strength and courage to keep going.” “For [my child’s] spirit alone. She would have totally embraced this life on earth forever, for as long as she could, but because her life plan was shorter than ours, I feel I have to embrace life until I’m not here anymore. She’s always with me!” Not feeling connected to child; desiring connection “I can’t find her…I still feel my mom [after her passing], I still dream about her and I kind of feel like she helps me with certain things. [My child] is just gone, and it’s always felt like that. From the moment she died, she was just gone. Like, there was nothing. I have never dreamed of her, nothing. And I tried to talk to her. She’s gone. I don’t know how to find her.” “I don’t feel her like my husband feels her. I don’t know what he does, but he says she’s with him every day.”
C) Signs	“I do look for signs all the time. I feel like I see them all the time and I feel very connected to her. In the outside world, in nature, in sunsets, you know, stars. She was really all into all of that. So, I feel very connected to her that way.” “I still get signs from him. They are funny. Very clever. I can still sense that he hasn’t lost his personality.”
D) Talking to the child about the afterlife	“I would say, ‘Honey, you are going to be leukemia-free in a few months. You’re going to die [and be] in heaven and you’ll be leukemia free and you’ll win, or you will have a miracle of God and you will win. But you will be leukemia-free’.…Just before she died, that’s what I said to her, ‘Remember, no matter what, you win’. That’s what we really believed. So, I think she wanted to win.” “[My son] said, ‘You know, I’m not upset. I know what’s going to happen to me if I die, I’m going to heaven. I don’t have any questions. This is just what God has planned for me’.…And that helped the family.”

Conversely, there was one parent who spoke about her initial preoccupation with the afterlife as being part of a phase of “denial” (Table 3A) and later shared her disappointment that she “can’t find” her child (Table 3B). It was not uncommon for parents to wish that their connection with their child was deeper or different in some way, especially in relation to the connection their partner seemed to feel or in contrast to their connection with the deceased during prior losses. Parents mentioned a few supportive practices to bolster their sense of their child’s enduring presence, including journaling, talking about the child, talking to the child (aloud or silently), visiting the child’s grave or a memorial site, and wearing jewelry containing the child’s ashes.

Parents also described receiving signs from their children after death (Table 3C). One child loved to listen to a song with a verse about rainbows; his grieving parent shared, “There have been eight or ten special events where [he] sends us a rainbow to let us know he’s still there and watching over us.” Parents sometimes acknowledged that they might “sound crazy” talking about signs. One parent who had received signs from her child explained, “I don’t try to reconcile it with my religious beliefs.” A different mother described how she initially felt disconnected from her child and “was not a believer” in signs or an enduring presence, until one day when she had an experience she could not explain. That was the beginning of her child sending “little reminders” that helped the mother feel closer to her child.

Parents not only spoke about afterlife beliefs in the context of bereavement, but also when their child was nearing end-of-life (Table 3D). A few parents shared poignant memories of talking about the afterlife with their children:

One of the things that has been a big part of my healing is that I told [my son] to go play with the angels…He saw the angels and he told us about the angels. That gives me healing, too.

One parent also described how she reassured her daughter by talking about what would happen to her physical body after death:

I said, “I’m going to be cremated…My remains are going to be in this cute little urn…And then when you go, they’re going to cremate you, too, and then put us together and then we’ll be together forever.” After that talk, she was not restless anymore.

In each of these cases, parents describe the child feeling comforted. It was also comforting to the parents to remember that the child was not afraid about what would happen to them after death.

Theme 2: Divine control

Among the parents interviewed, a dichotomy arose regarding beliefs about the degree to which there is a higher power in control. Many parents expressed sentiments that there is a higher power (usually “God”) in control. Parents placed different emphasis on the type and degree of divine control; some emphasized trusting in God’s plans, purposes, and power (Table 4A), while others emphasized trusting in God for support, comfort, clarity, and guidance (Table 4C).

Table 4. Quotes representing Theme 2: Divine control.

Sub-theme	Exemplary quotes
A) God/higher power is in control	“Whatever is happening, [God] ordered these steps a long time ago, and it is our job to walk through it and to let people know that he is still in control and we still have to trust and believe that it was for a purpose and it was for a plan.”
B) Human free-will and autonomy	“I was able to get closure in that way. Because, I’ve always believed that we choose our own challenges that we have in life. I believe [my child] chose that challenge…It takes the burden off of you and it takes it off of God.”
C) God guiding decisions	“There’s no guarantee. Your child may not respond to the medication, …I just prayed about it, I asked God to give the right decision when it came to choosing the medication.”
D) Finding meaning and purpose of child’s life, illness, and death	“What we want is not always what God wants…It took a lot of things, I had to look at and try to understand. I said, ‘Well, Job lost everything he had’. …I tried to go down this avenue to make myself feel better about why. And then I had to understand that she didn’t belong to me…She belonged to God. And sometimes God allows things to happen to make us understand.” “Hindsight is always 20/20 and you think about it and you process it more and you start to see how that web has played how, because I can see that now. That makes it easier. Not easier in the fact that I’ve lost [my child], but easier that I know how to deal with it. I know how to celebrate his life. I know his life had purpose.” “Noah didn’t know it was gonna rain…and there were certainly times when he didn’t want to get up and build this ark. But he got up every day and if it took him 10 years, 20 years, 30 years, who knows? There was purpose behind it. Whatever you’re going through is your ‘ark’ and God has a purpose for it…I don’t understand it, but I’m going to get up every day and I’m gonna do what I can to make life enjoyable. I’m gonna look at my blessings…and some days that works and some days it doesn’t.”
E) Asking ‘Why?’	“The honest-to-God truth is, I’ve been instantaneously healed of some things from God…So, that’s hard, because, like, ‘Well, why didn’t you heal my daughter?’ That’s something I’ve had to work through and I still work through that at times, you know? Because it’s just like you wanted that so bad, and you don’t see why that wouldn’t be a good thing.”

Some parents described specific beliefs that God has a plan and that there was purpose to their child’s life and, in some cases, their illness or death. Many parents described the process of questioning ‘why’ their child had to suffer or die: “The biggest thing for me was understanding why [she] had to leave me.” Some parents identified specific ways they believed God had used their child and the illness experience for good. Examples included beliefs about the child fulfilling their life purpose, the child’s story inspiring others, and the growth or increased faith that resulted from the family’s experience. One mother said, “If you pray enough, God will give you the clarity [on] what the purpose of this challenge is.” Most parents who endorsed belief in a divine plan did not identify a specific purpose to their child’s illness, but rather described a process of learning to trust that God had a purpose, even if they would never know what it was. One mother said it was helpful to remember the story of Job, who lost everything he had, as she came to terms with the belief that her child “didn’t belong” to her (Table 4D). One father cited that a turning point for him was studying the story of Noah’s ark in a bible study, as it showed him how God’s plan might be beyond his understanding (Table 4D). Many parents described wrestling with questions around how or why God could allow their child to die and shared that their “struggle” with these questions comes and goes (Table 4E).

Conversely, other parents placed a stronger emphasis on human autonomy, even if they also believed in the existence of a higher power. Some described having a sense of personal control, distinct from God. One parent explained that she prayed God would “take” her child, and she gave her child permission to “go.” She said,

It was as much on my terms, if you will, as it was on God’s terms, and that is probably the hardest thing I had to do as a Mom. But, in retrospect, I’m very thankful I did it, because it’s provided healing.

A different parent described how her spiritual beliefs in human autonomy and free-will frame how she makes sense of her family’s experience (Table 4B). Multiple parents also emphasized the role of doctors and nurses in their child’s treatment and, if they believed in prayer, they preferred for prayers to be directed toward the work of the medical team rather than miraculous healing:

Don’t tell me it’s part of his plan and don’t let me hear you praying for your team to win the Super Bowl. Let me hear you praying for [the doctor] to use his God-given talent to find a cure for this beast. It’s not going to be cured by a miracle because the right prayer cut through.

Differing views on divine control led to some interpersonal frustrations. Those who did not believe in a divine plan expressed frustration at hearing others talk about God having a plan: “If I hear one more person say, ‘This is God’s plan’, I’m going to scream…Was I not praying often enough? Was I not saying the right thing?” Those who did believe in a divine plan felt that other people sometimes wanted to dismantle their faith or felt like faith in God’s plan gave them a more positive outlook in comparison to those who did not hold that belief:

There were some parents that ridiculed me about it…[One lady] made a comment and said, “Well, I don’t know why you pray to God. He can’t heal your son, only nurses and doctors can.” And I’m like, seriously, lady? I’m going to church anyways.

Theme 3: Evolution of faith after loss

Many families expressed a desire to maintain or rediscover some form of spirituality or faith. Some parents spoke about how their spiritual or religious life (or that of their family members) had changed, been challenged, or grown (Table 5). Several parents cited their faith as a stabilizing force: “I’ve just got left my faith in God.” Parents also acknowledged struggling with faith to varying degrees: “As far as my faith is concerned, that’s kind of been a struggle since she passed…I did have a quick phase where I didn’t think there was a God.” Some parents felt their faith had grown or strengthened because of their experiences; wrestling with difficult questions and acknowledging challenges with faith were often described as part of this growth process (Table 5A). One parent who felt that her faith had strengthened after her child’s death said, “I feel that I have grown stronger, just on account of the fact that I want to get to my son.” She went on to describe how she made several changes to her life, “Because we were living in sin. I’m not getting to my son that way.”

Table 5. Quotes representing Theme 3: Evolution of faith after loss.

Sub-theme	Exemplary quotes
A) Growth/stability	“I know that our faith strengthened enormously. Because, our child died, but we’re still here. We’re still okay. We’re still being successful people…I care way more about people and making sure…that they know I love them.” “[The hospice pastor] would ask me, ‘How did I cope?’ He said, ‘You seem to be so strong…You still seem to be, one, smiling, two, standing, and not breaking…’ And I would always remind him that if we believe the profession of our faith that we stand on, then God is in the ultimate control.” “I could enjoy things more. I feel like I’m spiritual, too. I just feel like, because I felt that deep grief, I can feel tremendous joy.”
B) Challenge/struggle	“Sometimes, when I praise God, it’s more of a struggle than it ever was before. Sometimes, I have to push through things that I didn’t have to before.” “I still have problems with it. I mean, we still go to church and I still believe [my child] is in heaven. It’s definitely not the same. It seems like, for a while there, when [he] was sick, I was in constant dialogue. And now, I don’t think that much about it until the weekend and we’re at church.” “Am I furious at [God] for letting my son die? Sure…So, yes, it has affected my faith. I haven’t given up.”
C) Church	“I am still very angry. I think I stepped back in that church once, for a service for someone else who was very dear to me. I sat all the way in the back and I kept it together for about ten minutes and left.” “We’ve lost that faith and we stopped going to church….It’s hard, knowing that I’ve lost some of that faith, because I want it back, but it’s hard.”
D) Supportive practices	“I would take out Bible verses and scripture and relate them to our lives. Sometimes, I would get kind of down and I would have to put myself back and check, like, ‘No, no no! You wrote about how you would do this, or this helps you’. So that was an accountability for myself, to stick strong to what I believe.”

Parents were sometimes surprised by their initial religious or spiritual reactions to grief. For example, a mother who identified as spiritual but not religious described how her initial response to hearing that her child was dying was to think that God was mad at her or that she was being punished. She said, “For some reason, my head went Christian the second I heard he was going to die…which is odd, because I’ve never been a Christian.” She describes moving on from that way of thinking soon after and instead sought to make sense of her experience using her spiritual, non-Christian worldview about human self-determination.

In general, parents expressed a desire to sustain or rediscover their established faith or belief system. Parents often explained that they had the same beliefs before and after their child’s death, but their feelings or practices had changed. While one parent described “relying on [her] church family,” others were unable to return to the church community they belonged to before their child got sick. One parent who previously held a leadership position in the church said, “I have not been back to church in a year. I know I need to go back, and it’s not that I’m questioning God. I think I have just been in a solemn state.” She later explained that she didn’t know if she wanted to return to that church due to having experienced multiple losses there and being undecided about whether to return to leadership. Another parent described how their church was supportive, but “there wasn’t a person in the crowd who had been on a similar journey.” That parent recommends, “the sooner you can get in a supportive group of people who are in a similar circumstance…the better.” Similarly, a father found it very helpful to join a bible study with other men who had been through difficult experiences. One mother described how her husband found solidarity in his struggle with grief and questions of faith by connecting with a pastor who had written a memoir on his experience losing his child. The process of reading the book and meeting with the pastor helped this bereaved father see that he could acknowledge his anger at God and his questions about why this tragedy happened while still maintaining his faith.

Theme 4: Religious and spiritual interactions within the medical community

Many parents also discussed intersections of faith with their child’s illness or treatment journey, with particular emphasis placed on the people they met and relationships that formed along the way. Parents described feeling supported by hospital chaplains, even when the parent didn’t identify as especially religious. They appreciated talking with chaplains about how their child “had a mission here on earth” and felt that conversations with chaplains provided “peace.” A few parents emphasized how much they appreciated connecting with their child’s physicians over their faith. One parent recalled, “When [our son’s] liver was failing and we were all praying, [our doctor] held our hands and we prayed and he was there with us, he cried with us. It didn’t matter what his beliefs were.” Another mother fondly recalled how their family was “open about faith” with their medical team, which allowed their doctors to support their faith in return. She felt encouraged, saying, “That meant a lot to us, because they were on the same level as we were in the journey.” The same mother described her child’s last day,

We had probably forty people in [his] room the day he died at the hospital. It was a worship service. We were playing music, and I was in the bed with [him]. At one point, I looked over and his own doctor was worshipping, with tears rolling down her face. So that’s the bond in the family that you have.

Parents also discussed their appreciation for connecting with nurses, care coordinators, non-medical clinical staff, volunteers, and other patient families over their faith. One parent alluded to professional boundaries, sharing,

There was a volunteer that became very friendly. We had a really, really good conversation. We were just talking about spirituality stuff, and I guess somebody overheard it and told him that he couldn’t do that and get emotionally attached to families, but we went to the same church. So it was kind of a double-edged sword.

Even when families did not explicitly share or discuss their faith in a healthcare context, many parents explained how they found significant meaning in forming these relationships and being able to serve others, while their own child was receiving treatment:

For us, it was kind of a ministry opportunity in that we’re not the only patient at this place. How can we serve [those] that we come into contact with? That’s my husband’s and my mentality. And that included the doctors and the nurses.

Some parents felt God brought them to a particular hospital in order to meet and serve the people there. For example, one mother shared how she felt God positioned their family to form a relationship with a volunteer whose child was later diagnosed with cancer,

God put me in her life and I was there for her. She was able to get an inside window of the process by knowing me. I think it made it less traumatic for her when it was her turn. And, even though her child ended up [with] a better situation, we were there for each other.

A few parents offered thoughts about how the medical community can support their faith during bereavement. One Christian parent doubted whether the medical community could provide that kind of support, saying, “Do I feel like you guys could provide a place of healing? I don’t know. I would say with my own personal opinion, no, because your hands are bound. You have to kind of cater to all.” Conversely, another parent shared,

I think spirituality is huge, and just the faith that [our children] are around us and energy and love. It’s so strong that it carries you through. And I guess I want clinical teachers to work with families on that versus maybe some of the other stuff they learn in school.

Discussion

The parents in this study were not specifically asked to describe their religion, spirituality, or faith, yet nearly all parents organically brought it up in the course of talking about their experiences, both before and after their child’s death. This finding speaks to the integral role religion and spirituality may play in grief and anticipatory grief for parents of children with cancer. Religion and spirituality are a lens through which many parents make meaning, find purpose, engage with difficult questions, and define connectedness and relationships. The narratives in this study reflect the variety of roles religion and spirituality can play in the end-of-life and bereavement experience for parents.

Presently, health care clinicians receive little to no training in how to communicate with parents about religion and spirituality or support their religious/spiritual needs (Hurst et al., 2023; Puchalski et al., 2020). Our results suggest that many parents who self-affiliate with forms of Christianity want to connect with their clinicians over their faith, regardless of whether their clinicians share their belief system or background. Simple acts like witnessing worship, holding hands during a prayer, and mirroring spiritual language hold immense, enduring value, as evidenced by how these brief moments are remembered and shared by parents years after their child’s death. During serious illness and bereavement, the interdisciplinary medical community can also play a key role in how parents make meaning, find purpose, and feel connection. Even parents who placed more emphasis on the experience, training, and knowledge of clinicians (rather than on the potential for divine or miraculous work) valued having faith and trust in their clinician similar to having faith and trust in God. Further, faith in God and faith in the clinician or in medical technology can co-exist, with parents placing different emphasis at different times. In light of the spiritual significance many parents place on the medical community, separation from the medical community after a child’s death could represent a compound loss (Snaman et al., 2016). Our report not only underscores prior work showing that parents often want ongoing connection with their treatment team, but also suggests that maintaining relationships may be a key component to religious and spiritual support during bereavement.

Many grieving parents face religious and spiritual challenges in isolation from community. Although few recent studies have examined the role of faith-based communities during bereavement, evidence exists to suggest that community supports positive religious coping (Stelzer et al., 2020). Our findings demonstrate that parents may experience difficulty returning to their church communities, leading some to seek out new spiritual mentors or communities where they feel their experience of loss is better understood. Similarly, perinatal bereavement research shows that parents are increasingly seeking religious community online (Baker & Paris, 2018). The parents in our study articulated that they value communities made up of people who (1) have had difficult experiences or losses, and (2) have similar religious or spiritual perspectives. As parents transition from the treatment environment back to their home environment, bereavement support should include assistance with finding new community or reestablishing connections with an existing community, in accordance with the parents’ priorities and values.

Consistent with the vast literature on continuing bonds theory in bereavement (Denhup, 2021), this study found that parents desire an ongoing connection with their deceased child. Continuing bonds theory posits that an ongoing inner relationship between the bereaved and the deceased is normal and supportive (Hewson et al., 2023). Prior work with bereaved parents has established that maintaining connection with the deceased child is among the most important elements of adapting to the lifelong experience of being a bereaved parent (Denhup, 2021). Although spirituality often arises as a theme in qualitative studies on continuing bonds, there is surprisingly limited discussion in the literature about the interplay between religion and continuing bonds. Ismail and Dekel (2023) found that religious beliefs played an important role in continuing bonds for Muslim mothers and our study shows that spiritual and religious beliefs, language, and practices likewise play a significant role for bereaved Christian parents’ continuing bonds. Our results further illustrate that many parents have established religious beliefs about the afterlife that serve as a framework for their sense of their child’s enduring spirit; simultaneously, many parents form new conceptions of ways to spiritually relate to their child, such as seeing signs, exploring new spiritual beliefs, and speaking to their child in a number of different ways, highlighting the multidimensional nature of parents’ enduring connections with their child and how they can hold space for many possibilities at once. Future research into continuing bonds could investigate how religious, spiritual, and cultural differences can be integrated into continuing bonds theory and clinical therapeutic practice.

Beliefs and experiences related to enduring spiritual connection with the child were largely described as supportive and helpful in this study, but a few cases highlight vulnerabilities that may benefit from targeted supportive interventions. Literature on grief support has emphasized the need to create tangible mechanisms to translate research findings into useful clinical practice pathways (Sandler et al., 2005). For example, our findings suggest that grief support clinicians may want to consider language and exercises that normalize the phenomenon in which some bereaved parents compare their grief experience to those around them or to their own prior grief experiences. Additionally, clinicians who engage with bereaved parents should recognize the possibility that focusing on the afterlife immediately after loss helps some parents cope with the intolerable reality that the child is gone. Theological scholarship has described loss and grief as a path toward new spiritual insights and catharsis as a step toward healing (Daniel, 2017). Our data affirm this phenomenon, showing that preoccupation with the afterlife may represent a genuine belief, a source of hope, and/or a means of “denial” (as one parent termed it). Future research should explore how to identify when strong emphasis on the afterlife immediately after loss is supportive versus avoidant, what additional factors may put these parents at risk for complicated grief, and what type of support these parents need.

While attention to afterlife beliefs and enduring connections is often focused on bereavement, parent narratives also suggest that support for a parents’ sense of their child’s enduring spirit can begin prior to the child’s death. Ferrell et al. (2016) reported that children with cancer have a desire to talk about the afterlife as a way of understanding what is happening to them and what they might imagine experiencing beyond death. Oncology and palliative care clinicians should be prepared to support parents who want to speak to their child about afterlife. Considering the complexities and diversity of beliefs, imagery, language, and child development, more exploration of communication strategies and clinician training is warranted. While clinicians should not force or pressure parents to find meaning in death for their child, they can be aware that many parents do find meaning and purpose in death, guided by their spiritual and religious worldview related to the afterlife. Clinicians who identify those parents who seek meaning or purpose in their child’s imminent death (e.g., the relief of suffering) may be able to better align with parents by mirroring their language and supporting the family’s hopes and goals (e.g., for comfort or release from suffering).

This study reflects a diversity of positions on divine control, human autonomy, and release of control. In communicating with families at any stage of the illness or bereavement course, clinicians should assess (1) where a parent is placing the locus of control, and (2) what type of control feels most supportive to them personally. Additionally, clinicians should recognize that families are likely hearing a variety of opinions on this matter from other patient families, community members, or relatives within their own family. Some parents may feel frustrated or distressed by hearing statements about “God’s plan,” while other parents may feel that their faith in God’s control is dismissed by those who see it as an escape or a trite sentiment. We can support all parents by affirming their individual belief system as meaningful to them and equipping them with the skills to either respond to or avoid dissenting voices, at their discretion. Chaplains and pastoral care providers can offer additional specialized support and counseling that is specific to a parent’s religious tradition or theology.

This study has several limitations. Most notably, the study population is largely white, female, and Christian, reporting perspectives from this specific cohort which are not inherently generalizable across other populations. Future studies should consider purposive sampling to recruit and enroll participants with diverse representation across multiple domains, including religion. Sampling bias may also have affected results, as parents may have been more likely to participate in this study if they had certain personality types or particularly strong or memorable experiences, either positive or negative. This study asked parents to share memories from across the illness and bereavement trajectory, harnessing the time and longitudinal perspective bereaved parents have had to reflect on their experience. However, this cross-sectional study design relies on retrospective accounts, which intrinsically introduces recall bias. Longitudinal studies are needed to assess religious and spiritual supports and challenges across the illness and bereavement trajectory.

Conclusion

Religion and spirituality impact parents’ experiences throughout the illness and bereavement trajectory, including parent-clinician relationships, continuing bonds, and bereavement communities. Religious and spiritual interactions in the health care setting hold particular significance to parents and continue to be meaningful to parents throughout bereavement. Our study highlights several opportunities for future research and clinical applications, especially related to enhanced communication training for health care providers. Because spiritual needs during bereavement are highly diverse and personal, there will not be a one-size-fits-all intervention. Nevertheless, understanding religious and spiritual themes within bereavement narratives can inform clinical practice, frame development of supportive interventions, and inspire future research to explore parents’ and caregivers’ needs.

Acknowledgments

The authors are deeply grateful to all the parents who participated in this study by sharing their time, memories, and insights.

Disclosure statement

The authors report there are no competing interests to declare.

Additional information

Funding

This work is supported in part by ALSAC. Additionally, Dr. Kaye receives salary support from the National Cancer Institute (K08CA266935)