CAPACITY study 1

Developing and evaluating an advance care planning (ACP) tool for people with dementia and their informal carers

Background
Advance care planning is a process that enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and health-care providers. ACP addresses individuals' concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they, at some point, be unable to make their own decisions (Rietjens et al 2017). As people with dementia gradually lose their ability to make informed decisions, the process of ACP is particularly relevant for them. However, ACP remains relatively infrequent among people with dementia, and substantial barriers to engaging in ACP have been identified. Existing tools that are made to increase the prevalence and quality of ACP are mostly developed for people with illnesses other than dementia, and additionally these have traditionally focused on supporting the professionals when engaging in ACP conversations. ACP tools that aim to support the person with dementia and their family carer throughout the ACP process are limited and lack empirical underpinnings.

Aims:
Therefore, this study aims:
1) To develop an online ACP support tool with and for people with dementia and their family carers, using an iterative user-centred research design;
2) To conduct a feasibility trial to evaluate the acceptability, feasibility and perceived impact of the ACP support tool, and to test feasibility of methods and procedures for a randomized controlled trial.


Methods

  • For objective 1: Tool development via user-centered design

Phase 1: User-needs analysis: We will start with systematic reviews on ACP tools and conduct interviews and group discussions with people with dementia and their family carers to determine the content and design of the tool.
Phase 2: Development & proof of concept: Based on the findings of the first phase, we will develop the first prototype (version 0.0). People with dementia and their family carers will evaluate the face validity and readability of the tool, its lay-out and ease-of-use in a semi-structured interview. Based on their input, we will adapt the tool to a version 1.0.
Phase 3: Iterative usability tests: After adaptation of the tool, we will study the usability by using a “think aloud” method whereby people with dementia and their family carers are observed during their use of the ACP support tool by a researcher who also notes the participants’ mistakes, difficulties or comments. The positive and negative aspects of the ACP support tool, difficulties in using the tool, and advice to improve appearance and design, will be evaluated via semi-structured interviews, resulting in the final version 2.0. This version is again evaluated in a second usability testing with a differ group of participants producing the final version 3.0

  • For objective 2: Feasibility trial of the ACP tool with a mixed-method evaluation

We will use questionnaires and qualitative interviews to evaluate the acceptability, feasibility and perceived impact of the tool, and test feasibility of methods and procedures for a larger randomized controlled trial.

 
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