The Role of Religion and Spirituality in Caregiver Decision-Making about Tracheostomy for Children with Medical Complexity

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 five 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