Walker Rachael C, Naicker Derisha, Kara Tonya, Palmer Suetonia C
School of Nursing, Eastern Institute of Technology, Hawke's Bay, New Zealand.
Department of Nephrology, Starship Children's Health, Auckland, New Zealand.
J Ren Care. 2019 Sep;45(3):193-200. doi: 10.1111/jorc.12292. Epub 2019 Jul 11.
Kidney transplantation offers greater life expectancy, quality of life and participation compared with dialysis, in children with end stage kidney disease. This study explores the perspectives and experiences of parents of children undergoing kidney transplantation, as the experiences of parents in the process of transplantation is not completely understood.
Face-to-face semi-structured interviews were conducted with parents of transplanted children across New Zealand. Data were analysed using thematic analysis to identify themes of participant experiences and perspectives.
We interviewed 13 mothers and four fathers of the transplanted children. Four themes were identified: actively pursuing transplant (the urgency of transplant; needing to drive the transplantation process); lack of on-going support (needing access to specialists; feeling unprepared for demands of transplantation, and vulnerability of unmet emotional concerns), pressure on the family unit (strain of distance; disrupting parent team; added burden of parent as donor; financial stress) and constant concern for the future (living with enduring uncertainty; pressure of responsibility; apprehension of teenage years).
Parents of children need to play an active role in advocating and driving the transplantation process. Transplantation leads to parental role disruption, emotional and financial stress, and insecurity about the future for their child. These findings suggest the need for greater communication and transparency in the transplantation process with parents, improved emotional and financial support for families during and after transplantation, and explicit assistance for parental roles in families when a caregiver is the donor.
对于终末期肾病患儿，肾移植相较于透析能带来更长的预期寿命、更高的生活质量和更强的参与度。本研究探讨了接受肾移植患儿父母的观点和经历，因为移植过程中父母的经历尚未被完全了解。
对新西兰各地接受移植患儿的父母进行了面对面的半结构化访谈。使用主题分析法对数据进行分析，以确定参与者经历和观点的主题。
我们采访了13位接受移植患儿的母亲和4位父亲。确定了四个主题：积极寻求移植（移植的紧迫性；需要推动移植过程）；缺乏持续支持（需要接触专家；对移植需求准备不足，未满足的情感担忧带来的脆弱性），家庭单位面临的压力（距离带来的压力；打乱父母团队；父母作为供体增加的负担；经济压力）以及对未来的持续担忧（生活在持久的不确定性中；责任压力；对青少年时期的担忧）。
患儿父母需要在倡导和推动移植过程中发挥积极作用。移植会导致父母角色的混乱、情感和经济压力以及对孩子未来的不安全感。这些发现表明，在移植过程中需要与父母进行更多沟通和提高透明度，在移植期间及之后为家庭提供更好的情感和经济支持，以及当照顾者作为供体时，为家庭中的父母角色提供明确的帮助。
