Caicedo Carmen, Brooten Dorothy, Youngblut JoAnne M, Dankanich Julia
Carmen Caicedo, PhD, is assistant professor, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami. Dorothy Brooten, PhD, FAAN, is professor, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami. JoAnne M. Youngblut, PhD, FAAN, is Dr. Herbert & Nicole Wertheim professor, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami. Julia Dankanich, BSN, BS, is research assistant, Nicole Wertheim College of Nursing & Health Sciences, Florida International University, Miami.
J Hosp Palliat Nurs. 2019 Aug;21(4):333-343. doi: 10.1097/NJH.0000000000000559.
This qualitative study asked 70 mothers and 26 fathers 3 open-ended questions on what they wish they had and had not done and on coping 2, 4, 6, and 13 months after their infant's/child's neonatal intensive care unit/pediatric intensive care unit/emergency department death. Mothers wished they spent more time with the child, chosen different treatments, advocated for care changes, and allowed the child his or her wishes. Fathers wished they had spent more time with the child and gotten care earlier. Mothers wished they had not agreed to child's surgery/treatment, taken her own actions (self-blame), and left the hospital before the death. Fathers wished they had not been so hard on the child, agreed with doctors/treatment, and taken own actions (self-blame). Religious activities, caring for herself, and talking about/with the deceased child were the most frequent mothers' coping strategies; those of the fathers were caring for self and religious activities. Both mothers and fathers wished they had spent more time with their child and had not agreed to surgery/treatments. The most frequent coping was caring for themselves, likely to care for the family and retain employment. Nurses must be sensitive to parents' need for time with their infant/child before and after death and to receive information on child's treatments at levels and in languages they understand.
这项定性研究向70位母亲和26位父亲提出了3个开放式问题，内容涉及他们希望自己做了而未做的事情，以及在其婴儿/儿童在新生儿重症监护病房/儿科重症监护病房/急诊科死亡后2个月、4个月、6个月和13个月时的应对方式。母亲们希望自己能多陪陪孩子、选择不同的治疗方法、主张改变护理方式，并尊重孩子的意愿。父亲们希望自己能多陪陪孩子并更早地寻求治疗。母亲们希望自己没有同意孩子接受手术/治疗、没有自责以及在孩子去世前没有离开医院。父亲们希望自己没有对孩子那么严厉、没有同意医生的治疗方案以及没有自责。宗教活动、照顾自己以及谈论/提及已故的孩子是母亲们最常见的应对策略；父亲们的应对策略则是照顾自己和参与宗教活动。母亲和父亲都希望自己能多陪陪孩子，并且没有同意进行手术/治疗。最常见的应对方式是照顾自己，这可能有助于照顾家庭并维持工作。护士必须敏锐地意识到父母在孩子生前和死后陪伴孩子的需求，以及以他们能理解的水平和语言获取有关孩子治疗的信息。
