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In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP.

Background: Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. Method: In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis. Results: Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate. Conclusions: A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.

With a focus on the use of narrative approaches, this article is a commentary on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for this population. In response to this challenge, this article draws on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD. It promotes decision-making support as an approach to assist supporters of people with PIMD to allow those people's expressions of preferences to be acknowledged and acted upon at the end-of-life. The use of narrative is presented and discussed as a tool for enabling this responsiveness, specifically within the context of end-of-life planning.

Background: To improve the quality of palliative care, six evidence‐based tools were implemented in 10 care services specialised in care for people with intellectual disabilities. Contextual differences were taken into account by using a participatory action research approach. Method: The RE‐AIM framework (Reach, Effectiveness, Adoption, Implementation and Maintenance) structured the evaluation. Data sources were online questionnaires completed by 299 professionals at baseline (response 45.2%) and 250 professionals after 2.5 years (35.1%), 11 semi‐structured group interviews with 43 professionals, field notes and implementation plans. Results: A total of 767 professionals and 43 teams were reached. The effectiveness of the intervention was demonstrated in an improved knowledge of palliative care policy and increased competences among professionals. 79% of the professionals adopted tools in the toolbox. The participatory action research method was perceived as valuable in driving change. Conclusions: Improving palliative care needs a context‐specific, flexible approach, with involvement of all stakeholders. [ABSTRACT FROM AUTHOR]

Background: Providing palliative care for people with intellectual disabilities (ID) is challenging and professionals caring for people with ID often received limited training in palliative care., Objective: To gain insight into the implementation and sustainment of palliative care innovations, originally developed for the general palliative care population, in organizations for people with ID., Methods: A multi-method evaluation was performed of nine implementation projects concerning three palliative care innovations. Methods included document analyses of project proposals and reports, group interviews with project managers and professionals, and a questionnaire completed by projects managers. Factors influencing implementation were categorized using the Consolidated Framework for Implementation Research., Results: The three innovations were applicable in organizations for people with ID, although some adaptations had been made. Implementation activities were focussed on training, cooperation and dissemination of the innovation. Influencing factors were mostly related to the inner setting of the organization, including management support and available resources. Five of the nine project managers were not sure if the innovation was sustained properly within their organization., Conclusions: Innovations originally developed for use in the general palliative care population can be successfully implemented in organizations for people with ID, although adaptation to the specific care setting might be necessary., Competing Interests: Funding This work was supported by ZonMw, The Netherlands Organization for Health Research and Development. The authors have no conflicts of interest to declare., (Copyright © 2020 Elsevier Inc. All rights reserved.)