Dr. Spandana Rayala – Two Worlds Cancer Collaboration, Canada, Bayt Abdullah Children’s Hospice, Kuwait
Spandana Rayala is a pediatric palliative specialist practicing at Bayt Abdullah Children’s Hospice, Kuwait. She is the Associate director of Sunflower Children’s Network, Two Worlds Cancer Collaboration working towards improving access to pediatric palliative care globally. She also volunteers as telemedicine specialist for Médecins Sans Frontières.
Feature Article
Mendoza Martínez, M. G., Guadarrama Orozco, J., & Peláez Ballestas, I. (2024). Pilgrimage in pediatric palliative care: The journey of caregivers. Social Science & Medicine (1982), 343, 116508.
Commentary
Children with Serious Illness & Caregiving in the Global South
The profound impact of caring for a seriously ill child echoes through families and communities across the Global South. In the field of pediatric palliative care across low and middle-income countries, this burden rests on the shoulders of family caregivers – mostly mothers, sisters, aunts, and grandmothers – who learn to navigate a terrain initially unfamiliar. Culturally, the feature article and other chosen articles describe living and caring for ill children in India, Iran, Mexico and Lebanon.
In Kerala, India, Abdulla et al.(2024) collected data from the primary caregivers tending to chronically ill children. The stories of financial devastation, mental health issues including depression and suicidal thoughts, chronic sleep deprivation, and fatigue along with systemic challenges of poor access to drugs and support systems to care for their children resonate beyond the corridors of hospitals.
The Iranian context, explored by Pouy et al. (2023), reveals how inadequate healthcare infrastructure intersects with cultural expectations of caregiving. While the article focuses on describing formal caregiver (healthcare professional) inputs, families have requests that include better access to welfare services, sibling involvement, and support and respite to the caregivers.
Cruz-González et al. (2023) were brave enough to illuminate that women already bearing the crushing weight of caring for a seriously ill child often face abuse at home (almost one-third), their vulnerability compounded by society’s assumption that caregiving is part of ‘domestic work’.
In Lebanon, where Rassam et al. (2024) conducted their research, the extent of the involvement of ‘parents providing palliative care for children with cancer’ with no medical training to pursue their child’s comfort, and procure medications and equipment. Their actions are born of ‘intuition’ rather than knowledge or choice. The study also notes that for these caregivers, living with an extended family might afford ‘extra’ time for the care of a child.
The metaphor of pilgrimage in healthcare, explored by Mendoza Martínez et al. (2024) in the feature article here on their study of Mexican caregivers, discusses the search for a health system that is increasingly specialized to provide a definitive diagnosis, offer a cure, help them deal with the outcomes including disability or death. Unlike traditional pilgrimages with a clear destination, these journeys often have no certain endpoint, sometimes with no end in sight requiring ‘continuous adaptation’.
These five studies from different corners of the global South weave shared experiences that transcend geographical boundaries. The gendered nature of caregiving, the catastrophic financial toxicity, the parent to quasi-medical professional transformation, and the search for support systems are the common threads.
The implications are clear for the practice and advocacy of healthcare policy. We must recognize caregivers as indispensable stakeholders who need to be empowered to be experts in their child’s care. Support systems must care for the well-being of caregivers – including mental health support, respite care, and protection from domestic violence. Mechanisms to prevent the financial toxicity that often accompanies long-term caregiving must be developed and strengthened.
As we keep building evidence to what we all as health care professionals already know that the family bears a huge burden of the failings of our healthcare system as well as the social support structures, these articles can guide us to no longer be the silent standby witnesses. It makes me see these ‘informal’ caregivers not just as users or consumers, rather as partners and collaborators.
References
- Abdulla, S., Pillai, H. P. G., & Ramachandran, R. (2024). Concerns of Primary Caregivers of Children with Complex Chronic Conditions in Kerala: A Qualitative Analysis. Indian Journal of Palliative Care, 30(1), 47–55.
- Pouy, S., Ezbarami, Z. T., Rassouli, M., Darbandi, B., & Javadi-Pashaki, N. (2023). Unmet Needs of Palliative Care Among Iranian Children with Cancer and Their Families: A Qualitative Study. International Journal of Cancer Management, 16(1), Article 1.
- Cruz-González, C. I., Guadarrama-Orozco, J. H., Peláez-Ballestas, I., El Din-Ismail-Paz, E. F., Castilla-Peón, M. F., Romero-Mendoza, M., & Romero-Guadarrama, J. (2023). Vulnerability in women primary caregivers of children in palliative care due to intimate partner violence in a pediatric hospital in Mexico. Boletin Medico Del Hospital Infantil De Mexico, 80(6), 339–344.
- Rassam, R. S., Huijer, H. A.-S., Noureddine, S., Smith, E. M. L., Wolfe, J., Fares, S., & Abboud, M. R. (2024). Parents providing palliative care for children with cancer. Ecancermedicalscience, 18, 1724.
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