Implementation and sustainment of palliative care innovations within organizations for people with intellectual disabilities: A multi-method evaluation

Disabil Health J. 2021 Apr;14(2):101049. doi: 10.1016/j.dhjo.2020.101049. Epub 2020 Dec 8.


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.

Keywords: Implementation; Innovations; Intellectual disability; Palliative care; Sustainment.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Disabled Persons*
  • Humans
  • Intellectual Disability*
  • Organizations
  • Palliative Care
  • Surveys and Questionnaires