Physicians’ Perceptions on Quality of Life of Persons with Profound Intellectual and Multiple Disabilities: A Qualitative Study

Appolonia M. Nieuwenhuijse, Dick L. Willems, E. Olsman

    Research output: Contribution to journalArticleAcademicpeer-review


    Background: Quality of Life (QoL) may be a factor in physicians’ decisions on treatment of persons with Profound Intellectual and Multiple Disabilities (PIMD). We explored the perception of physicians on the QoL of persons with PIMD.

    Method: We conducted semi-structured interviews with seven experienced physicians treating persons with PIMD, thematically analysed them and identified clusters of related elements of QoL.

    Results: Emotional, physical and relational clusters of elements were found. Physicians named mainly emotional elements to describe good QoL, physical elements to describe poor QoL and they emphasised the role of relational context on QoL. In addition, they mentioned a balance between good and poor elements as good QoL. Physical decline, bad prognosis and increasing problems in the relational context influenced QoL in a negative way.

    Conclusions: The influence of the relational context on both good and poor QoL needs more investigation because of its consequences for ethical decision-making.
    Original languageEnglish
    Pages (from-to)176-183
    JournalJournal of Intellectual and Developmental Disability
    Issue number2
    Publication statusPublished - 2020

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