Kawahara Tae, Yamazaki Akemi
Department of Pediatric and Family Nursing, Division of Health Sciences, Graduate School of Medicine, Osaka University, 1-7 Yamadaoka, Suita City, Osaka 565-0871, Japan.
Health Care Transit. 2023 Jul 14;1:100009. doi: 10.1016/j.hctj.2023.100009. eCollection 2023.
Spina bifida (SB) involves neurogenic bladder and bowel deficits. While parents manage the bladder and bowel disorders of their youth in the early years, the youth themselves must eventually take responsibility for their own management. However, the experience of shifting responsibility for complex toilet management from the parents to the youth has not been thoroughly investigated. Therefore, as exploratory research, the present study aimed to reveal the interactions between parents and youths with SB during the time of increasing responsibility for bladder and bowel management (i.e., the transition phase).
Twelve parent-youth pairs (youths with SB aged 11-18 years) participated in dyadic interviews, and a parent-youth transition experience was categorized by the context of parent-youth interactions and analyzed using the grounded theory approach.
The results indicated that parents provide professional, complete bladder and bowel management until their youth reach physical and mental maturity. During the transitional phase, they work together to master youth self-management in interactions described as "share, try, and decide through parent-youth interactions". Finally, the youth are able to master control of their own bladder and bowel management without requiring assistance from their parents.
Although parent-youth interactions are not always present during the pre- and post-transition phases, the parent-youth relationship acts to facilitate the independence of the youth by taking advantage of the parent-youth subsystem during the transitional phase. Interventions during these challenging periods could help facilitate the transition to bladder and bowel self-management among the youth.
脊柱裂（SB）会导致神经源性膀胱和肠道功能障碍。在早年，父母负责管理青少年的膀胱和肠道疾病，但最终青少年自己必须承担起自我管理的责任。然而，将复杂的如厕管理责任从父母转移到青少年身上的经历尚未得到充分研究。因此，作为探索性研究，本研究旨在揭示在膀胱和肠道管理责任增加时期（即过渡阶段），患有脊柱裂的父母与青少年之间的互动情况。
十二对父母 - 青少年组合（患有脊柱裂的青少年年龄在11至18岁之间）参与了二元访谈，并根据父母与青少年互动的背景对父母 - 青少年过渡经历进行分类，并采用扎根理论方法进行分析。
结果表明，父母会在青少年身心成熟之前提供专业、全面的膀胱和肠道管理。在过渡阶段，他们通过“通过父母 - 青少年互动进行分享、尝试和决定”的互动方式共同努力掌握青少年自我管理。最后，青少年能够在无需父母协助的情况下掌握对自己膀胱和肠道的管理。
虽然在过渡前和过渡后阶段并非总是存在父母 - 青少年互动，但父母 - 青少年关系通过在过渡阶段利用父母 - 青少年子系统来促进青少年的独立性。在这些具有挑战性的时期进行干预有助于促进青少年向膀胱和肠道自我管理的过渡。
