Advance Care Planning in palliative care for people with intellectual disabilities

Hille Voss

    Research output: PhD ThesisPhD-Thesis - Research and graduation internal

    205 Downloads (Pure)


    Advance Care Planning (ACP) is defined as: “the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate”. The idea is that this proactive approach will ensure that the care provided is in line with a person’s wishes and needs, resulting in a better quality of life. Despite the importance of ACP, little is known as yet about ACP in the care for people with ID. This thesis aims to obtain a better understanding of ACP in palliative care for people with ID. The research questions addressed in this thesis are: - What is already known in the scientific literature about the use, content and effects of ACP for people with ID in need of palliative care? (Chapter 2) - How does ACP currently take place within organisations for people with ID requiring palliative care and how are the wishes of people with ID taken into account? (Chapter 3) - What do people with ID, relatives and professionals perceive as important for ACP in palliative care for people with ID? (Chapter 4) - What facilitators and barriers influence the implementation process and sustainment of innovations in palliative care for people with ID? (Chapter 5) - How is an ACP programme for professionals caring for people with ID developed, implemented and evaluated? (Chapter 6) The thesis ends with a summary and general discussion (Chapter 7), in which the main findings are summarised and discussed, methodological considerations are described and recommendations are made for practice and future research.
    Original languageEnglish
    Awarding Institution
    • Vrije Universiteit Amsterdam
    • Francke, A.L., Supervisor, External person
    • Metsemakers, Job, Supervisor, External person
    • Veer, A.J.E., Co-supervisor, External person
    • Wagemans, Annemieke, Co-supervisor, External person
    Award date22 Jan 2021
    Print ISBNs9789461226518
    Publication statusPublished - 22 Jan 2021


    • advance care planning
    • intellectual disability
    • palliative care


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