Spiritual Care Needs of Hospitalized Children and Their Families: A National Survey of Pastoral Care Providers’ Perceptions Chris Feudtner, MD, PhD, MPH*‡; Jeff Haney, BS§; and Martha A. Dimmers, MDiv, MSW ABSTRACT. Objective. Although spirituality is viewed as a vital aspect of the illness experience by most Americans, little is known about this domain of pediatric health care. The objective of this study was to profile pastoral care providers’ perceptions of the spiritual care needs of hospitalized children and their parents, barriers to better pastoral care, and quality of spiritual care in children’s hospitals. Methods. A cross-sectional mail survey was con- ducted of pastoral care providers at children’s hospitals throughout the United States, with a 67% response rate from 115 institutions. Results. Respondents estimated that, among patients they visited, 34% were chronically ill and 21% were clearly dying. Half or more of patients were thought to have spiritual care needs regarding feeling fearful or anxious, coping with pain or other physical symptoms, and regarding their relationship to their parents or the relationship between their parents. Among patients’ par- ents, 60% to 80% were estimated to have felt fearful or anxious, had difficulty coping with their child’s pain or other symptoms, sought more medical information about their child’s illness, questioned why they and their child were going through this experience, asked about the meaning or purpose of suffering, and felt guilty. Respon- dents agreed on 3 barriers to providing spiritual care: inadequate staffing of the pastoral care office, inade- quate training of health care providers to detect patients’ spiritual needs, and being called to visit with patients and families too late to provide all the care that could have been provided. Overall, respondents judged that their hospitals were providing 60% of what they deemed as ideal spiritual care. Conclusions. Pastoral care providers believe that the spiritual care needs of hospitalized children and their parents are diverse and extensive. With system-level bar- riers cited as limiting the quality of spiritual care, con- siderable improvement may be possible. Pediatrics 2003;111:e67–e72. URL: http://www.pediatrics.org/cgi/ content/full/111/1/e67; spiritual care, pastoral care, spiri- tuality, religion, children’s hospitals, chaplaincy. M ost Americans consider themselves either religious or spiritual, with 9 of 10 believing in God or a higher power. 1 Among adult patients in the United States, many view spirituality as a vital aspect of the illness experience. 2–5 These widely held beliefs lately have joined accumulating empirical evidence of health benefits associated with religious or spiritual activities. 6 Although skepticism is still warranted, 7,8 the medical community has shown during the past decade mounting interest in the role of spirituality and religion in health care. 9,10 In this context, the spiritual care needs of hospital- ized children and their families and the nature of the pastoral care that they receive are revealed as impor- tant yet neglected topics. The literature on the spiri- tual care of sick children consists mostly of case studies, reviews of theories regarding spiritual de- velopment, suggested methods, and editorial opin- ion. 11–18 More empirically based reports are starting to appear, including the assessment by an expert panel of hospital chaplains of whether a model spir- itual well-being index accurately measures how chil- dren manifest spiritual distress 19 ; a survey of health care providers in a single neonatal intensive care unit, which found a “strong undercurrent” of spiri- tual and religious beliefs and practices regarding patient care work 20 ; and a qualitative study that de- scribed a variety of spiritual and religious beliefs or coping mechanisms among children with cystic fi- brosis. 21 To provide additional useful information about the spiritual care needs of sick children, we surveyed pastoral care providers who work at major children’s hospitals throughout the United States. Using the pastoral care providers as key informants, we sought to profile 1) their perceptions regarding the spiritual care needs of hospitalized children and their parents, 2) their opinions regarding barriers to better care, and 3) their overall assessment of the current quality of spiritual care in children’s hospitals. For the purposes of this investigation—although consensus has yet to emerge regarding standard def- initions of spirituality or religion 22–24 —we devel- oped a broad model of spiritual care needs (Fig 1). Our model was based on a dynamic and ecumenical interpretation of spirituality as those beliefs, activi- ties, and relationships that mediate, influence, or modify the relationship between several domains of human experience and transcendent issues or con- cerns. In this view, spirituality is perceived as a mode of living—a process, an inquiry, a conversa- From the *Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania; ‡Department of Pediatrics, University of Pennsylvania, Philadelphia, Penn- sylvania; §School of Medicine, University of Washington, Seattle, Washing- ton; and Department of Pastoral Care, Children’s Hospital and Regional Medical Center, Seattle, Washington. Received for publication Mar 28, 2002; accepted Aug 30, 2002. The authors alone are responsible for the contents of this article. Reprint requests to (C.F.) Division of General Pediatrics, Children’s Hospi- tal of Philadelphia, 34th and Civic Center Blvd, Philadelphia, PA 19104. E-mail: feudtner@email.chop.edu PEDIATRICS (ISSN 0031 4005). Copyright © 2003 by the American Acad- emy of Pediatrics. http://www.pediatrics.org/cgi/content/full/111/1/e67 PEDIATRICS Vol. 111 No. 1 January 2003 e67 by guest on May 28, 2020 www.aappublications.org/news Downloaded from