PalCare and Center for Good Mourning, Arkansas Children's Hospital, Little Rock, Arkansas, USA.
J Palliat Med. 2013 Jun;16(6):609-15. doi: 10.1089/jpm.2012.0475.
With the continuing growth of pediatric palliative care, there is an increasing need to develop effective training for health care professionals. Bereaved parents have participated in the training of health care professionals utilizing curriculum from the Initiative for Pediatric Palliative Care (IPPC), but the experience of bereaved parents as educators has not been studied.
This qualitative research examined the experience of bereaved parents involved in pediatric palliative care education of health care professionals and the challenges and possible benefits for the health care professionals.
Nine bereaved parents and eleven health care professionals were interviewed about their experiences in a pediatric palliative care education program utilizing the IPPC curriculum. The interviews were recorded, transcribed, coded and analyzed for themes and subthemes.
Major themes found were a sense of purpose for the parents and benefits and challenges for both parents and professionals. The experience for parents contributed to their meaning-making for both their children's lives and deaths. Parents and professionals identified mutual learning and increased mutual understanding. Some professionals noted that the presence of parents may have limited the openness of discussion of the professionals and parents acknowledged challenges of emotional management in their participation in the educational program. Both parents and professionals recognized and described challenges involved in working sensitively with patients and families without being overwhelmed by the intensity of situations where children die.
More benefits than burdens were experienced by both parents and health care professionals from the participation of bereaved parents in the palliative care trainings.
随着儿科姑息治疗的持续发展，对医疗保健专业人员进行有效培训的需求日益增加。已经有丧亲父母参与了利用儿科姑息治疗倡议（IPPC）课程对医疗保健专业人员的培训，但丧亲父母作为教育者的经验尚未得到研究。
本定性研究考察了参与儿科姑息治疗教育的丧亲父母的经验，以及对医疗保健专业人员的挑战和可能的益处。
9 名丧亲父母和 11 名医疗保健专业人员接受了关于他们利用 IPPC 课程参与儿科姑息治疗教育计划的经验的访谈。对访谈进行了记录、转录、编码和分析，以确定主题和子主题。
主要发现的主题是父母的目的感，以及父母和专业人员的益处和挑战。父母的体验有助于他们对孩子的生活和死亡的意义的理解。父母和专业人员都认为彼此学习并增进了相互理解。一些专业人员指出，父母的存在可能限制了专业人员讨论的开放性，而父母也承认在参与教育计划时在情绪管理方面的挑战。父母和专业人员都认识到并描述了在不被儿童死亡等紧张情况所淹没的情况下，与患者和家庭进行敏感合作所涉及的挑战。丧亲父母参与姑息治疗培训，父母和医疗保健专业人员都体验到的好处多于负担。
