Chris Feudtner1, Jeff Haney, Martha A Dimmers. 1. Division of General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania 19104, USA. feudtner@email.chop.edu
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 conducted 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' parents, 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. Respondents agreed on 3 barriers to providing spiritual care: inadequate staffing of the pastoral care office, inadequate 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 barriers cited as limiting the quality of spiritual care, considerable improvement may be possible.
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 conducted 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' parents, 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. Respondents agreed on 3 barriers to providing spiritual care: inadequate staffing of the pastoral care office, inadequate 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 barriers cited as limiting the quality of spiritual care, considerable improvement may be possible.
Authors: Anita N Shah; Katherine A Auger; Heidi J Sucharew; Colleen Mangeot; Kelsey Childress; Julianne Haney; Samir S Shah; Jeffrey M Simmons; Andrew F Beck Journal: J Hosp Med Date: 2020-11 Impact factor: 2.960
Authors: Jessica Livingston; Yao I Cheng; Jichuan Wang; Matthew Tweddle; Sarah Friebert; Justin N Baker; Jessica Thompkins; Maureen E Lyon Journal: Pediatr Blood Cancer Date: 2020-09-12 Impact factor: 3.167
Authors: J Gregory Dolan; Douglas L Hill; Jennifer A Faerber; Laura E Palmer; Lamia P Barakat; Chris Feudtner Journal: Pediatr Blood Cancer Date: 2021-04-12 Impact factor: 3.838