Families who’ve experienced the death of a child from cancer provide insight into the subject of hope.

A CHILD’S CANCER DIAGNOSIS brings extreme stress. Bereaved parental perspectives on hope during their child’s cancer journey can prove complex and subjective. Hope, which can alleviate distress, is difficult to define. In the face of good outcomes or a favorable prognosis, families direct hope toward a cure or remission. However, when confronted with poor outcomes, hope remains essential, but defining it becomes more challenging. Nurses may struggle to understand how to incorporate hope into care, regardless of patient outcomes.

In spring 2023, we conducted a comprehensive literature search for the following question: “What does hope mean to bereaved parents during the child’s cancer journey?” In our search of bereavement, parental hope, and cancer research, we found few articles retrospectively surveying parents’ perceptions of hope after the death of a child to cancer. This research prompted us to develop a survey with open-ended questions for parents related to hope during their child’s cancer journey. The survey allowed participants to share in their own words their perceptions of hope, how hope evolved during their child’s illness, and external factors that played a role in shaping their hope.

The project

We used a qualitative exploratory design to understand bereaved parents’ experience with hope during their child’s cancer journey. This project received university Institutional Review Board approval in May 2023. After obtaining written consent from participants, we used an online Qualtrics survey to collect demographic information about the parents and qualitative data regarding the characteristics of the children who died.

In the open-ended questions, we elicited bereaved parents’ perspectives on hope to gain insight into their perceptions. We invited participants to answer questions in their own words to the depth they felt comfortable.

Participants and setting

Eligible participants included parents who had lost a child to cancer. Exclusion criteria included those who had children still living with a cancer diagnosis and parents who had lost a child to causes other than cancer. We defined “parent” as mother, father, stepmother, or stepfather. Our definition of “children” had no age restriction and included pediatric or adult children.

We recruited participants via several organizations related to pediatric cancer, bereavement, and child loss in addition to various social media groups related to parental loss from cancer. Ultimately, 60 parents from around the world answered the survey. (See Limitations.)

Findings

Participant responses came from 26 U.S. states, Australia, Canada, Iceland, the Philippines, and the United Kingdom. The participant’s relationship to the child who died from cancer (n=60) was primarily mother (95%); the remaining included father (3%) and stepmother (2%). Most of the participants fell between ages 37 to 66 (85%), had graduated from high school or college (78%), and identified as white (92%).

Characteristics of the children who passed away from cancer included a slightly larger male population (53%) with varying types of cancer. The age at the time of death from cancer ranged from 1 year to 43 years. The time since death ranged from less than 6 months to more than 15 years. (See Demographics)

Our analysis of the open-ended questions found four common themes: faith and examining the greater good for the child, hope for survival and a normal life, hope for improved quality of life, and giving up on hope.

Faith and examining the greater good.

Many parents spoke of the importance of spirituality (from their perspective and their child’s) and its relationship to hope during the cancer journey. Parents found faith a positive distraction and/or a lifeline for a miracle. Some parents spoke of their child’s faith as central to keeping hope alive, which required parents to stay strong. Participants also described faith as integral to their internal strength. Faith for some included a religious component, for others it meant trust in the unknown and a search for peace.

Responses including faith and a focus on the greater good emerged as parents reflected on their children’s cancer journeys. Descriptions of the power of faith (“It meant that I have a GOD who is greater than the adversity we were facing at that time.” and “Our only hope was in Jesus.”) illustrated how faith can provide hope and optimism amidst a cancer journey. Comments such as “Hoping for healing from God” further emphasize the role of faith in maintaining hope through their children’s journeys.

Hope for survival and a normal life.

Parents indicated that hope meant a fervent desire for their child’s survival and ability to live a normal life. Parents heard stories of other children who survived cancer, and hoped their child also would beat the odds. However, normal activities like going to school and being with friends, once typical childhood activities, weren’t guaranteed because of treatments, doctor visits, and the child’s physical inability to participate.

One parent hoped “That she would feel better and live a full life,” while another articulated the aspiration for “Complete healing. A full life for my child.” One participant voiced their “Hope that my child would be a survivor,” and another succinctly captured the collective sentiment, saying, “That she would be cured.” These comments, including “Hope meant she was able to attend school and be as normal a kid as possible,” support parents’ unwavering optimism and determination to seek the best possible outcomes for their children’s health and future, at least early in the cancer journey.

Hope for a good quality of life.

Quality of life becomes an important indicator of hope, and participants defined it on a spectrum depending on the child and progression of disease. Parents described their child at the beginning of the cancer journey as having a high quality of life. As treatment progressed and prognosis worsened, quality of life concepts changed.

Medical treatments, doctor appointments, and side effects take a toll on a child with cancer. Parents hope for symptom management and comfort became a priority. One parent said, “Hope for me at the time was to make her as comfortable as possible.” Another simply stated, “No pain.” Another parent focused on the ability to communicate: “…. I hoped she would not lose all ability to communicate and would be able to do something herself.” Echoing several other parents regarding quality of life, one parent said, “My greatest hope was that she could have quality of life for as long as possible.”

Giving up on hope.

The final theme uncovered a reality that hope for some parents disappeared as cancer progressed. Confusion, anger, and “why my child” thoughts emerged. Hope transitioned to action (creating a bucket list or meeting milestones) or simply giving up. One parent said, “Hope didn’t really have a meaning anymore.”

Acceptance regarding the severity of disease and the imminence of death became apparent. One parent said, “I found it difficult to be hopeful due to the type of cancer he had.” Several participants echoed this loss of hope. For example, one said, “I had no hope, I knew he would die.”
Based on participants’ responses, their views on hope changed as the child’s cancer progressed. Initially, hope meant a cure, but as the prognosis worsened, the meaning of hope changed to quality of life, comfort, and small joys like meeting milestones (early celebrations of birthdays or holidays).

Discussion

Parents provide great insight into defining hope during their children’s cancer journeys; healthcare professionals should rely on them for expertise on this sensitive topic. The perception of hope, as defined by those who’ve experienced the loss of a child, provides awareness of the process of hope during unimaginable circumstances.

Similar to Barton’s study, some parents found meaningful qualities of hope, while others described hope for something other than a cure as giving up. To avoid framing the absence of a cure as giving up, nurses should refer to withdrawing care as “redirecting care.” In other words, a parent can experience hope beyond that focused on a cure.

Healthcare professionals also should consider the diversity of perspectives on hope as it relates to culture, language, and other personal factors. These factors can significantly shape a person’s experience and understanding of hope, making it essential to approach each family’s views with sensitivity and an appreciation for their unique context.

Nursing implications and key takeaways

We found that examining hope from multiple lenses during a child’s cancer journey based on parental perspective can improve care and serve as a communication guide for nurses. When caring for families facing a child’s cancer diagnosis, nurses play a pivotal role in fostering hope through sensitive and effective communication. By addressing parents’ perceptions of hope and anticipating changes within the family unit, nurses can help guide families through this challenging time with compassion and support.

Initiate hopeful communication

Nurses can engage in thoughtful communication that balances realism with maintaining hope when caring for families facing a child’s cancer diagnosis. In situations that involve a terminal diagnosis, encourage families and children to explore other sources of the meaning of hope beyond the possibility of a miracle. For example, ask the family what hope means to them and what they hope for their child. Acknowledge the difficult role of being a caregiver. Provide support to parents away from the child so they have an opportunity to ask questions and vent.

Tailor discussions

Nurses can include discussions about hope in the care plan, with the understanding that each family’s perception of hope is unique. Set small, short-term goals and celebrate wins, such as when a child participates in meal selection three times in the week or expresses interest in play once a day. Reinforce and support parental caregiving by encouraging participation in care.

Keep in mind that hope can mean anything from a cure, symptom management and patient comfort, to helping a family adjust to the new reality. Faith may play a vital role, but not for all families. Depending on the situation, nurses should wait for the family to initiate discussions of faith or religion.

Avoid false reassurance

Nurses should avoid making false reassurances, which can hinder meaningful conversation. Instead, focus on understanding what hope means to each family and formulating short- and long-term goals even in the presence of a poor prognosis.

Avoid any message, such as “There’s nothing more we can do,” that indicates abandonment of all hope by the healthcare team. Focus on realistic goals, such as symptom management, spiritual needs, and family requests (for example, pet visits). Never offer false assurance; stay away from phrases such as “Everything will be okay.”

In addition, don’t exclude the child from age-appropriate conversations. Sadler and colleagues recommend waiting for the child to ask questions and to avoid offering information the child doesn’t ask about.

Try not to create uncertainty or new worries. For example, rather than saying, “This treatment works most of the time,” say “They’re receiving excellent care and every child reacts differently. We are closely monitoring their reactions to the treatment and will keep in close communication with you. Please feel free to ask questions at any time.”

Support hope

Supporting a parent’s perception of hope, especially when facing the death of a child, requires effective communication. Nurses play a key role in helping families explore hope and what it means to them. Conduct discussions on hope at the comfort level of the parent.

Tailor early and transparent communication to each family, intentionally creating space for hope. For example, begin with, “I can only imagine how challenging this must be for you,” or “Would you like to talk about what gives you strength and hope right now?”

Always pair honesty about the prognosis with emotional support. Offer your support with “We will be here with you every step of the way” or ask, “What matters most to you and your child right now?”

Anticipate family changes

Discuss with parents that their family unit may experience significant changes, shifts in priorities (being away from home, focus on ill child), and altered family routines. Include options for family support in discussions, such as housing options like the Ronald McDonald House; community resources that may provide food or transportation; local, state, and national organizations like the Pinky Swear Foundation; and spiritual support such as the hospital chaplain or local religious leaders.

Implement support programs early

Advocate for the initiation of formal standardized cancer discharge and support programs upon diagnosis. Some organizations have pediatric palliative care teams and make early referrals to promote quality of life with a challenging diagnosis. Sadler notes that these teams can help with symptom management and community resources. Social service or managed care referrals also can help increase awareness of resources, local support groups, or organizations.

Highlight hope

The findings of this project highlight hope and its resulting impact on parents during their child’s cancer journey, with clear takeaways for nursing. The findings speak to the importance of empathetic nursing communication with intentional integration of hope discussions, realizing the individuality of hope, and understanding the subjective and complex experience for parents as they navigate the journey of a child diagnosed with cancer.

The authors work at Minnesota State University Mankato. Ellen Johnson is an assistant professor. Sally Clemenson is an associate professor, and Shantelle Smith and Allyson Hopperstad are assistant professors.

American Nurse Journal. 2026; 21(2). Doi: 10.51256/ANJ022628

References

Barton K, Taylor M, Kingsley J, Bogetz J, Trowbridge A, Rosenberg A. “Is this the end or a bend?”: Navigating hope at end of life in pediatric oncology. J Pain Symptom Manage. 2020;60(1):250.

Braun V, Clarke V, Boulton E, Davey L, McEvoy C. The online survey as a qualitative research tool. Int J Soc Res Methodol. 2021;24(6):641-54. doi:10.1080/13645579.2020.1805550

Granek L, Barrera M, Shaheed J, et al. Trajectory of parental hope when a child has difficult-to-treat cancer: A prospective qualitative study. Psychooncology. 2013;22(11):2436-44.

Hockenberry M, Haugen M, Slaven A, et al. Pediatric education discharge support strategies for newly diagnosed children with cancer. Cancer Nurs. 2021;44(6):E520-30. doi:10.1097/NCC.0000000000000947

Koyu HO, Algül G, Altay N, Kilicarslan E. The effect of psychological resilience and spiritual well-being on the experience of hope in parents of children with cancer. J Pediatr Nurs. 2024;76:e34-41. doi:10.1016/j.pedn.2024.01.016

Nielsen CL, Clemensen J, Holm KG, Jensen CS, Callesen MT. Identifying parental needs when caring for a child or adolescent with cancer: Participatory design study. Iproc. 2022;8(1):e41469. doi:10.2196/41469

Sadler K, Khan S, AlGhamdi K, Alyami HH, Nancarrow L. Addressing 10 myths about pediatric palliative care. Am J Hosp Palliat Care. 2023;41(2):193-202. doi:10.1177/10499091231174202

Sisk BA, Friedrich A, Blazin LJ, Baker JN, Mack JW, DuBois J. Communication in pediatric oncology: A qualitative study. Pediatrics. 2020;146(3):e20201193. doi:10.1542/peds.2020-1193

Superdock AK, Cravo E, Christianson C, Farner H, Mehler S, Kaye EC. Communication about prognosis across advancing childhood cancer: Preferences and recommendations from bereaved parents. J Palliat Med. 2025;28(10):1325-31. doi:10.1089/jpm.2025.0136

Van Schoors M, De Mol J, Morren H, Verhofstadt LL, Goubert L, Van Parys H. Parents’ perspectives of changes within the family functioning after a pediatric cancer diagnosis: A multi family member interview analysis. Qual Health Res. 2018;28(8):1229-41. doi:10.1177/1049732317753587

Williams AH, Rivas S, Fuentes L, et al. Understanding hope at diagnosis: A study among Guatemalan parents of children with cancer. Cancer Med. 2023;12(8):9966-75. doi:10.1002/cam4.5725

Key words: hope, bereavement, grieving parents