Wool Charlotte, Dudek Martha
York College of Pennsylvania, 441 Country Club Drive, York, PA 17403, USA.
J Genet Couns. 2013 Aug;22(4):533-43. doi: 10.1007/s10897-013-9581-7. Epub 2013 Apr 18.
Perinatal palliative care is a collaborative model of providing care to fetuses diagnosed with life-limiting conditions along with supportive care to parents. The study explored perceptions and current practice trends of genetic counselors related to this care. An ethics framework was used to structure the study. This cross-sectional, mixed method study was conducted to illuminate perceptions, practice barriers, familiarity with perinatal palliative care, clinician comfort, and referral comfort. The Perinatal Palliative Care Perceptions and Barriers Scale was self-administered online to 212 genetic counselors. Hierarchical multiple regression, used to test the hypothesis that perceptions, barriers to PPC, years of experience, personal comfort and prior familiarity with PPC explain variation in comfort of referral to PPC, yielded a significant overall R (2) of .51. These findings are the first data describing genetic counselors' perspectives and some of the factors contributing to referral comfort. Genetic counselors broadly endorsed the importance of palliative care concepts. They varied in their comfort with referral practices in ways that may be mitigated by increasing their familiarity with this evolving model of care.
围产期姑息治疗是一种为被诊断患有危及生命疾病的胎儿提供护理并为其父母提供支持性护理的协作模式。该研究探讨了遗传咨询师对这种护理的看法和当前的实践趋势。采用了一个伦理框架来构建该研究。这项横断面混合方法研究旨在阐明看法、实践障碍、对围产期姑息治疗的熟悉程度、临床医生的舒适度以及转诊的舒适度。围产期姑息治疗认知与障碍量表通过在线方式由212名遗传咨询师自行填写。分层多元回归用于检验以下假设：对围产期姑息治疗的看法、障碍、经验年限、个人舒适度以及先前对围产期姑息治疗的熟悉程度可解释转诊至围产期姑息治疗时舒适度的差异，得出的总体R（2）为0.51，具有显著性。这些发现是描述遗传咨询师观点以及一些影响转诊舒适度因素的首批数据。遗传咨询师广泛认可姑息治疗概念的重要性。他们在转诊实践中的舒适度存在差异，而增加对这种不断发展的护理模式的熟悉程度可能会缓解这种差异。
