Johnson, Dennis (2013) Pediatric Palliative Care in Brasov, Romania: Factors Enabling Their Success. PhD thesis, Lancaster University.
11003802.pdf - Published Version
Available under License Creative Commons Attribution-NoDerivs.
Download (7MB)
Abstract
Background/Aims: Prioritization in healthcare systems may result in few resources being available for the care of children with life-threatening and life-limiting diseases particularly in resource-poor countries. The aim of this thesis is to understand the purported success of pediatric palliative care (PPC) in Brasov, Romania, as it is portrayed as a beacon of palliative care in Central and Southern Europe despite the paucity of healthcare resources. Methods: This qualitative study takes an iterative, reflexive approach to gathering and analyzing the data. Semi-structured interviews with a wide range of participants were used. Ethnographic observations were recorded in the inpatient unit, in the Children's Day Care Center and their wheelchair trips into the city, and during homecare visits. The observations and transcribed interviews were methodically and reflexively reviewed; categories which might yield factors contributing to success emerged. Excerpts were taken from the triangulated data and submitted to a process of filtering and sorting that facilitated identification of similar phrases, themes and patterns. Higher level themes emerged from the alignment of the categorized data and were then interrogated by further data collection and analysis to the point of theoretical saturation. Results: The factors that enable the success of PPC in Brasov are a unique paradigm of PPC, an undying image, compassion, solidarity, and power equity. Foucault's power framework was used to shape an explanatory theory for their success. Power imbalances were redressed by avowing transnational citizenship in addition to nationality, targeting the effects of power rather than the power authority, contesting what is thought to be known, engaging the immediate problem at hand, opposing efforts to isolate individuals from the society that nurtures them, and resisting attempts to control "who we are". Conclusions: Brasov PPC provides a medical home for children with life-limiting illnesses. This new, integrated standard of care offers seamless, continuous, and equitable healthcare at a reasonable cost and has the potential to transform the care of children with life-limiting and life-threatening diseases elsewhere. The findings of this study suggest that a culture of competent and compassionate care is created by embracing these transformative changes in healthcare delivery and complementary changes in the education of healthcare professionals.