Abstract
This study was initiated in response to strong and consistent evidence showing that people with learning disabilities are frequently excluded from decisions about how they will live and die when they have serious illnesses and life-limiting conditions. The researcher’s previous work also provided a firm basis for further exploration and, as such, the study aimed to answer the question, ‘what factors enable people with learning disabilities to access and participate in the development of their own Advance Care (AC) plans?’
The study utilised a Participatory Action Research methodology, which drew on the lived experience of a co-research group that had an interest in the topic. The co-research group, located in Waitaha Canterbury, a region of Aotearoa New Zealand, was made up of seven older adults with learning disabilities, all of whom were able communicators, and managers from their community residential disability services. The co-researchers directed the study and were also participants in the study’s three action research cycles. In addition, family members, health professionals, and additional disability service professionals were involved as participants. The authentic involvement of the co-researchers with learning disabilities ensured that their perspectives were prioritised and that practice transformations were tailored specifically to work for them.
Cycle one focused on reviewing the current AC planning process in Aotearoa New Zealand, and identifying ways that it could be improved to better meet the needs of people with learning disabilities. A new approach was designed, and during cycle two the materials to support this were developed. This included an Easy-Read information pamphlet, an Easy-Read AC plan template, an education workshop for guides, and a resource to help guides with implementation. During cycle three the new approach and materials were trialled and evaluated, with improvements being made throughout the cycle in direct response to data.
The study achieved its objective of developing an approach to AC planning that enabled people with learning disabilities to get started and successfully develop their own AC plans. Not only were the AC plans considered to be useful and to contain clear and trusted decisions, but they captured the essence of the person (their personality, values, beliefs), and led to increased confidence and comfort in talking about death and dying for people with learning disabilities and their family members. In addition, the study resulted in the development of an emergent framework to illustrate three key types of factors that contribute to successful AC planning: supportive infrastructure, processes, and approach.
The findings provide a starting point from which to build a framework for AC planning with people with learning disabilities that may have wide applicability. In addition, there is potential for the findings to influence future policy and service development, thereby improving people’s choice and autonomy at the end of life. As such, this study makes a valuable and practical contribution to the AC planning evidence base and to practice in this developing field.