Yang Bao-Huan, Mu Pei-Fan, Wang Wen-Sheng
School of Nursing, Chang Gung University of Science and Technology, Guishan District, Taoyuan City, Taiwan.
Institute of Clinical Nursing, National Yang-Ming University, Taipei City, Taiwan.
J Clin Nurs. 2016 Sep;25(17-18):2648-57. doi: 10.1111/jocn.13312. Epub 2016 Aug 1.
To probe into parents' anticipatory loss of school-age children with Type I or II spinal muscular atrophy.
Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy or an infection of the lungs. Therefore, family members experience anticipatory loss, which causes grief before the actual loss. Family members feel physically and mentally exhausted, which results in a family crisis. Therefore, it is important to explore their experiences related to anticipatory loss to assist with the adjustment of the families to their circumstances.
This study applied a phenomenology method and purposive sampling.
The 19 parents who participated in this study were referred to us by two medical centers in Taiwan. Their average age was 32-49 years.
Using in-depth interviews, this study explored parents' anticipatory loss. The interviews were recorded and transcribed. Meanings were extracted using Giorgi analysis, and precision was assessed according to Guba and Lincoln, which was treated as the evaluation standard.
Four themes were identified from the parents' interviews. The themes included enduring the helplessness and pressure of care, suffering due to the child's rare and unknown condition, loss of hope and a reinforcement of the parent-child attachment, and avoiding the pressure of death and enriching the child's life.
The research findings help nurses identify anticipatory loss among parents of school-age children with type I or II spinal muscular atrophy. They enhance health professionals' understanding of the panic that occurs in the society surrounding the families, family members' dynamic relationships, and the families' demands for care.
In an attempt to providing intersubjective empathy and support with family having a child with type I and II SMA, nurses may recognize relevant family reactions and enhancing their hope and parent-child attachment. Encourage family members and child go beyond the pressure of death and create customized care plans meeting families' emotional and medical needs.
探究患有Ⅰ型或Ⅱ型脊髓性肌萎缩症学龄儿童家长的预期性丧亲之痛。
脊髓性肌萎缩症是一种导致死亡的罕见疾病。儿童因渐进性萎缩或肺部感染而过早死亡。因此，家庭成员会经历预期性丧亲之痛，即在实际丧亲之前就产生悲伤情绪。家庭成员会感到身心疲惫，进而引发家庭危机。因此，探索他们与预期性丧亲之痛相关的经历，以帮助家庭适应自身状况非常重要。
本研究采用现象学方法和目的抽样法。
参与本研究的19位家长由台湾的两个医疗中心转介给我们。他们的平均年龄在32至49岁之间。
本研究通过深入访谈探究家长的预期性丧亲之痛。访谈进行了录音和转录。采用 Giorgi 分析法提取意义，并根据 Guba 和 Lincoln 的方法评估精确性，将其作为评估标准。
从家长访谈中确定了四个主题。这些主题包括忍受护理的无助和压力、因孩子罕见且不明的病情而痛苦、希望破灭与亲子依恋的强化，以及避免死亡压力并丰富孩子的生活。
研究结果有助于护士识别患有Ⅰ型或Ⅱ型脊髓性肌萎缩症学龄儿童家长的预期性丧亲之痛。它们增强了医疗专业人员对家庭周围社会中出现的恐慌、家庭成员的动态关系以及家庭护理需求的理解。
为了向患有Ⅰ型和Ⅱ型脊髓性肌萎缩症患儿的家庭提供主体间的同理心和支持，护士可以识别相关的家庭反应，增强他们的希望和亲子依恋。鼓励家庭成员和孩子超越死亡压力，制定满足家庭情感和医疗需求的定制护理计划。
