Pictured left to right: The Nafasi Kati Research Team – Callie Daniels-Howell, Gladys Chepkorir, Elizabeth Kabuthi.
A recent study examining how families experience childhood cancer and death in Kenya has provided important insights for improving palliative end-of-life care for children. These were recently shared at ICPCN’s monthly webinar on Children’s Palliative Care. The research was conducted as part of Callie Daniels-Howell’s PhD research at University College London, working in close collaboration with Elizabeth Kabuthi and Gladys Chepkorir at Moi Teaching and Referral Hospital, along with other key partners including TEARS Foundation Kenya.
The study, conducted at Moi Teaching and Referral Hospital in Eldoret, Kenya, sought to understand how the space between illness and death of a child from cancer is experienced from the perspective of families, and what they desire for care during this time. The research found that families navigate not only their child’s medical condition but also significant structural constraints including financial barriers, healthcare system limitations, and complex institutional processes, suggesting important challenge and opportunity for developing end-of-life care in diverse contexts.
Hearing Families’ Stories
Over 18 months in 2022 to 2023, we spent eight months working as part of the social work team in the paediatric oncology ward, followed by ten months of storytelling and group meetings with nine families whose children had died while on the ward. This approach allowed us to witness firsthand the challenges families faced while their children were alive and then continue walking alongside them through their first year of grief.
The story of nine-year-old Brian and his mother illustrates the complex realities many families encounter. Brian lived with his single mother in an urban slum, where she earned about $3 per day as a street vendor. When Brian developed persistent eye problems, his mother took him to various local hospitals and clinics but was repeatedly told nothing was wrong and sent home.
As Brian’s condition worsened and he became paralyzed from the waist down, his mother tried everything she could think of—prayers, traditional healers, different hospitals. Each step of the way, she encountered barriers: hospitals demanding payments she couldn’t afford, referrals that required hundreds of dollars for transport, and a confusing system where critical information was withheld or unclear.
At one hospital, Brian’s mother was told she needed to pay $175 for an ambulance to the Moi Teaching and Referral Hospital. Unable to afford this, she returned home and continued seeking other treatments. When she finally reached another hospital, they again referred Brian to Moi Hospital but would not let Brian leave for two months under policies that prevent patients from leaving until their bills are paid.
It was only after Brian died that his mother discovered the first hospital had actually diagnosed him with cancer months earlier—the information was written on discharge papers using medical abbreviations she couldn’t understand, and no one had explained to her what it meant or why urgent treatment was needed. This added layers to her grief over Brian’s death as she questioned what might have been.
The Immense Knowledge of Families
One of the most important findings challenges common assumptions about what families want to know about their child’s condition. While many parents described wanting more information from doctors, the reality is far more nuanced. Families are constantly collecting and interpreting signs to understand their child’s status. Families often know much more than healthcare providers realize, even when they haven’t been explicitly told their child is dying.
Brian’s mother began recognizing signs that her son was approaching death by observing other children on the ward and noting changes in how medical staff spoke to her. She knew Brian was going to die but was never given guidance on how to care for him during his final days. This left her feeling isolated and disturbed.
She later reflected that while she had wanted more information earlier in Brian’s illness, knowing that death was imminent while having no way to prevent it was incredibly painful and she would have rather not known in advance that he was going to die. This suggests that families need information that helps them care for their children, rather than simply being told their child will die.
Beyond Cultural Sensitivity: The Need for Structural Awareness
While cultural sensitivity is often emphasized in healthcare, this research reveals the critical importance of “structural sensitivity”—understanding how poverty, healthcare policies, and system limitations profoundly shape families’ experiences.
Brian’s mother tried everything possible to save her son, but was repeatedly blocked by financial barriers, language differences, policy restrictions, and a healthcare system that provided information in ways she couldn’t access or understand. The hospital’s detainment policy meant that even after Brian died, his body was held in the mortuary for over a month while his mother struggled to raise money for the bills. This complicated and extended her grief as it prevented cultural burial rituals and community mourning.
Accompaniment: Walking Alongside Families
The most powerful theme emerging from this research is families’ desire for “accompaniment”—having people walk alongside them through their journey rather than directing or managing their experience. This doesn’t require special training or resources; it means making space for families to tell us what’s most important to them and following their lead.
Accompaniment might look like taking extra time during ward rounds to ask if families have questions, ensuring medical information is translated and explained clearly, having someone help families navigate billing processes, or making follow-up visits after a child dies. In the study, researchers partnered with TEARS Foundation Kenya to provide peer-led grief support groups and repeatedly visited families throughout their first year of bereavement.
One mother reflected: “In this story, the most important thing is that I have healed. After sharing my whole story, I came to find that those I was with also have a journey like mine.”
Practical Implications for Care
This research suggests that paediatric palliative care in diverse settings must address both immediate medical needs and the broader context shaping families’ experiences. This could include:
- Recognizing that families often understand more about their child’s condition than they’re given credit for and supporting them with information they can use to care for their children
- Advocating for policy changes that reduce structural barriers to care and offering practical support navigating healthcare systems, billing, and bureaucratic processes
- Continuing support through bereavement, including opportunities for families to share their stories and connect with other families
The goal is not to impose external ideas about how families should experience their child’s illness and death, but to create space for families to care for their children in ways that make sense within their own cultural and economic contexts.
Through Brian’s story and those of the eight other children, we learn that truly caring end-of-life care requires not just medical expertise, but deep attention to the complex realities families navigate and a commitment to walking alongside them.
This research was conducted with immense gratitude to the families who shared their stories, and in collaboration with colleagues at Moi Teaching and Referral Hospital and TEARS Foundation Kenya.
Written by Callie Daniels-Howell PhD, Research Manager, ICPCN.
Image description: Peer-led grief counselling circle for the nine families participating in the study, led in partnership with TEARS Foundation Kenya.