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"I'm still here": exploring what matters to people with intellectual disability during advance care planning
- Authors:
- McKENZIE Nicola, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(6), 2017, pp.1089-1098.
- Publisher:
- Wiley
Background: 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. Methods: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews. Results: 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. Conclusion: 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. (Publisher abstract)