Pathways to perseverance : volunteer experiences in China's nascent pediatric hospice care

Abstract

Pediatric hospice care is holistic care for children with terminal illnesses and their families. Respecting life and viewing death as a natural event, this care intends to neither hasten nor postpone death. Instead, it aims to enable dying children to have comfort and dignity while passing away peacefully and support the involved families to go through the dying process smoothly. Pediatric hospice care is often provided by an interdisciplinary team of caregivers, responding to children’s and their families’ physical, social, psychological, and spiritual needs. This medical anthropology thesis studies volunteers’ service experiences in China’s nascent pediatric hospice care system. As neither relatives bound to children by familial responsibility nor medical practitioners bound to patients by professional responsibility, volunteers play a unique role in this emerging field. The core question is how these volunteers can persevere in providing this care. The primary research methodology included collecting data from self-administered questionnaires and semi-structured interviews with volunteers, medical practitioners, and nonprofit organization employees from Beijing, Shanghai, and Guangzhou from 2020 to 2022. Qualitative content analysis was also performed on evidence from volunteer service records and other related materials. The thesis uses caring as relating as the analytical framework. It identifies the following challenges for volunteers’ perseverance and finds corresponding answers to how volunteers overcome them. Firstly, there is the unpredictability of pediatric terminal illnesses exacerbated by uncertainties associated with symptom diagnoses and caregiving practices’ potential conflicts with hospice care principles. Imagination facilitated volunteers to overcome experiential gaps with their care-receivers, relate to the latter sufficiently, and achieve non-judgmental care. Secondly, volunteers face capacity limitations and insufficient external support, which result in unavoidable inefficacious services. Because of their devotedness to pediatric hospice care, the impelling power of suffering that motivate them to care, and care’s rewarding effect, volunteers relate their past and present experiences and future goal, gain self-acceptance, and grow to care better by trying to care more. Thirdly, the COVID-19 pandemic distanced volunteers and ill children and worsened the communication difficulties between the two. Via online services, volunteers invited ill children to express their lived experiences, affirm the experienced and expressed, and accept those children as legitimate social members despite serious or terminal illnesses. Volunteers and the children they care for relate to each other through this expressing and affirming process and enjoy ontological security. This thesis deepens conceptual understanding of care and perseverance. Firstly, volunteers participate in synchronic care-sharing with seriously or terminally ill children and their families. Secondly, their perseverance is a diachronic process of integrating past experiences and current situations, whereby they create care and become better caregivers.