McKenzie Nicola, Mirfin-Veitch Brigit, Conder Jennifer, Brandford Sharon
Christchurch, New Zealand.
Donald Beasley Institute, Dunedin, New Zealand.
J Appl Res Intellect Disabil. 2017 Nov;30(6):1089-1098. doi: 10.1111/jar.12355. Epub 2017 Apr 4.
This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning.
This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews.
There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning.
The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.
本研究旨在从智力残疾和生命有限状况患者的角度，确定加强和抑制其预立医疗计划的因素。
这项深入的定性研究通过访谈和文件审查，探索了四名智力残疾和生命有限状况患者的经历。
所有参与者对于对预立医疗计划产生积极影响的因素达成了强烈共识，即：按照我的节奏进行；支持我做出自己的选择；调整流程以适合我，以及，最重要的是；继续支持并规划我仍在过的生活。除了在临终支持方面感到舒适/熟练外，促进者所需的技能与所有形式的以人为本的规划所需的技能相似。
研究结果令人鼓舞，并表明预立医疗计划是确保智力残疾患者在生命结束时对自己的生活拥有控制权和选择权的有用工具。
