Orange Home-care Clinic, Fukui, Japan.
Imamura General Hospital, Kagoshima, Japan.
Pediatr Int. 2023 Jan-Dec;65(1):e15683. doi: 10.1111/ped.15683.
Parents of children with medical complexity (CMC) have extra child-raising responsibilities because of the time commitments necessary for care, and their social participation is often compromised. Experiencing leisure excursions with such children may be a solution to some of these problems but the first-hand experience of excursions in regard to their psychological impact on the caregivers of CMC remains to be appraised.
Semi-structured interviews were conducted, via video conference, with eight informal and eight formal caregivers of CMC who attended an excursion to Tokyo Disney Land (TDL). We investigated the psychological changes that they had experienced through the excursion, performing inductive thematic analysis.
Three themes were identified among parents and five were identified among medical professionals. Themes reported by the parents were: Increased trust in the public and society (Theme 1); confidence for other challenges (Theme 2), and connection with other parents in the non-medical settings (Theme 3). Themes reported by medical professionals were: Expanding the initiative to other CMC (Theme 1); feeling bonded with other caregivers within the working group (Theme 2); information exchange across different working groups (Theme 3), positive responses from CMC (Theme 4); families' confidence to go out (Theme 5).
This study showed that the excursion to TDL led to positive psychological changes in both medical professionals and parents of CMC, enhancing trust, connection, and confidence. The promising results of this study suggest a need for further research about the impact of an excursion on caregivers of CMC.
患有复杂疾病儿童(CMC)的父母需要承担额外的育儿责任,因为照顾孩子需要投入大量时间,他们的社交参与往往受到影响。与这些孩子一起体验休闲出游可能是解决部分问题的方法,但关于出游对 CMC 照顾者的心理影响的第一手经验仍有待评估。
通过视频会议对参加东京迪士尼乐园(TDL)出游的 8 名非正式和 8 名正式 CMC 照顾者进行半结构化访谈。我们通过归纳主题分析来调查他们在出游中经历的心理变化。
在父母中确定了三个主题,在医疗专业人员中确定了五个主题。父母报告的主题包括:增强对公众和社会的信任(主题 1);对其他挑战有信心(主题 2),以及在非医疗环境中与其他父母建立联系(主题 3)。医疗专业人员报告的主题包括:将主动性扩展到其他 CMC(主题 1);在工作团队中与其他照顾者建立联系(主题 2);跨不同工作团队进行信息交流(主题 3),CMC 做出积极反应(主题 4);家庭外出的信心增强(主题 5)。
这项研究表明,TDL 之旅使 CMC 的医疗专业人员和父母都产生了积极的心理变化,增强了信任、联系和信心。这项研究的有前景结果表明,需要进一步研究出游对 CMC 照顾者的影响。