Department of Pediatrics, Wake Forest School of Medicine, Winston-Salem, NC, USA.
Department of Social Sciences and Health Policy, Wake Forest School of Medicine, Winston-Salem, NC, USA.
J Health Care Chaplain. 2022 Jan-Mar;28(1):95-107. doi: 10.1080/08854726.2020.1755812. Epub 2020 Apr 22.
Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years. Four themes emerged: (1) Caregivers believed R&S to be powerful for their children's healing, and helped them cope with their children's illnesses; (2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; (3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; (4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making.
患有复杂疾病的儿童（CMC）接受维持生命的治疗，例如气管切开术。本文的目的是探讨有复杂疾病的儿童（CMC）的照顾者的宗教和精神信仰（R＆S）在他们为孩子选择气管切开术时所扮演的角色。我们对 41 名在过去 5 年内接受过气管切开术的 CMC 照顾者进行了深入访谈。出现了四个主题：（1）照顾者认为 R＆S 对孩子的康复非常有效，并帮助他们应对孩子的疾病；（2）精神信仰是照顾者决定为孩子进行气管切开术的重要因素；（3）出于各种原因，许多照顾者并未与临床医生讨论他们的精神信仰；（4）总体而言，神职人员和医院牧师发挥了主要的支持作用；但是，他们在决策过程中并没有发挥重要作用。我们的研究表明了 R＆S 的重要性，以及神职人员和牧师在儿科气管切开术决策中的作用。
