Qualitative analysis of palliative care for pediatric patients with cancer at Bugando Medical Center: An evaluation of barriers to providing end-of-life care in a resource-limited setting

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2018-03-01

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Abstract

Purpose Palliative care remains an urgent, neglected need in the developing world. Global disparities in end-of-life care for children, such as those with advanced cancers, result from barriers that are complex and largely unstudied. This study describes these barriers at Bugando Medical Center, one of three consultant hospitals in Tanzania, to identify areas for palliative care development suitable to this context. Methods In-depth interviews were conducted with 20 caregivers of pediatric patients with cancer and 14 hospital staff involved in pediatric end-of-life care. This was combined with 1 month of participant observation through direct clinical care of terminally ill pediatric patients. Results Data from interviews as well as participant observation revealed several barriers to palliative care: financial, infrastructure, knowledge and cultural (including perceptions of pediatric pain), and communication challenges. Although this study focused on barriers, what also emerged were the unique advantages of end-of-life care in this setting, including community cohesiveness and strong faith background. Conclusion This study provides a unique but focused description of barriers to palliative care common in a low-resource setting, extending beyond resource needs. This multidisciplinary qualitative approach combined interviews with participant observation, providing a deeper understanding of the logistical and cultural challenges in this setting. This new understanding will inform the design of more effective—and more appropriate—palliative care policies for young patients with cancer in the developing world.

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10.1200/JGO.17.00047

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Esmaili, BE, K Stewart, N Masalu and K Schroeder (2018). Qualitative analysis of palliative care for pediatric patients with cancer at Bugando Medical Center: An evaluation of barriers to providing end-of-life care in a resource-limited setting. Journal of Global Oncology, 4(1). 10.1200/JGO.17.00047 Retrieved from https://hdl.handle.net/10161/16143.

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Scholars@Duke

Stewart

Kearsley A Stewart

Professor of the Practice of Global Health
Schroeder

Kristin M. Schroeder

Associate Professor of Pediatrics

I have a strong belief that all children diagnosed with cancer should have the same chance of cure regardless of where they live. Since 2014, i have spent six or more months per year in Mwanza, Tanzania, at the Bugando Medical Centre as part of the Duke Global Cancer Program. In addition to developing capacity for pediatric cancer care, my research focuses on creating interventions to improve outcomes and reducing treatment abandonment in low resource settings. 

As a trained pediatric neuro-oncologist, I am also involved in neuro-oncology capacity development in Sub-Saharan Africa, and am collaborating with a multidisciplinary team in Tanzania to establish diagnostic and treatment opportunities for patients. 


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