Shu-Mei Liu1, Hung-Ru Lin2, Frank L Lu3, Tzu-Ying Lee4. 1. Department of Nursing, National Taiwan University Hospital, Taipei, Taiwan. 2. School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan. 3. Division of Pediatric Pulmonology and Critical Care Medicine, Department of Pediatrics, National Taiwan University Hospital and National Taiwan University Medical College, Taipei, Taiwan. 4. School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan. Electronic address: tzuying@ntunhs.edu.tw.
Abstract
PURPOSE: The purpose of this project was to explore the parental experience of making a "do not resuscitate" (DNR) decision for their child who is or was cared for in a pediatric intensive care unit in Taiwan. METHODS: A descriptive qualitative study was conducted following parental signing of a standard hospital DNR form on behalf of their critically ill child. Sixteen Taiwanese parents of 11 children aged 1 month to 18 years were interviewed. Interviews were recorded, transcribed, analyzed and sorted into themes by the sole interviewer plus other researchers. RESULTS: Three major themes were identified: (a) "convincing points to sign", (b) "feelings immediately after signing", and (c) "post-signing relief or regret". Feelings following signing the DNR form were mixed and included "frustration", "guilt", and "conflicting hope". Parents adjusted their attitudes to thoughts such as "I have done my best," and "the child's life is beyond my control." Some parents whose child had died before the time of the interview expressed among other things "regret not having enough time to be with and talk to my child". CONCLUSION: Open family visiting hours plus staff sensitivity and communication skills training are needed. To help parents with this difficult signing process, nurses and other professionals in the pediatric intensive care unit need education on initiating the conversation, guiding the parents in expressing their fears, and providing continuing support to parents and children throughout the child's end of life process.
PURPOSE: The purpose of this project was to explore the parental experience of making a "do not resuscitate" (DNR) decision for their child who is or was cared for in a pediatric intensive care unit in Taiwan. METHODS: A descriptive qualitative study was conducted following parental signing of a standard hospital DNR form on behalf of their critically ill child. Sixteen Taiwanese parents of 11 children aged 1 month to 18 years were interviewed. Interviews were recorded, transcribed, analyzed and sorted into themes by the sole interviewer plus other researchers. RESULTS: Three major themes were identified: (a) "convincing points to sign", (b) "feelings immediately after signing", and (c) "post-signing relief or regret". Feelings following signing the DNR form were mixed and included "frustration", "guilt", and "conflicting hope". Parents adjusted their attitudes to thoughts such as "I have done my best," and "the child's life is beyond my control." Some parents whose child had died before the time of the interview expressed among other things "regret not having enough time to be with and talk to my child". CONCLUSION: Open family visiting hours plus staff sensitivity and communication skills training are needed. To help parents with this difficult signing process, nurses and other professionals in the pediatric intensive care unit need education on initiating the conversation, guiding the parents in expressing their fears, and providing continuing support to parents and children throughout the child's end of life process.
Authors: Daniel B Horton; Jomaira Salas; Aleksandra Wec; Melanie Kohlheim; Pooja Kapadia; Timothy Beukelman; Alexis Boneparth; Ky Haverkamp; Melissa L Mannion; L Nandini Moorthy; Sarah Ringold; Marsha Rosenthal Journal: Arthritis Care Res (Hoboken) Date: 2021-03 Impact factor: 4.794