Condition-Specific Pamphlets to Improve End-of-life Communication in Long-term Care: Staff Perceptions on Usability and Use

Tamara Sussman, Sharon Kaasalainen, Eunyoung Lee, Noori Akhtar-Danesh, Patricia H. Strachan, Kevin Brazil, Robin Bonifas, Valérie Bourgeois-Guérin, Patrick Durivage, Alexandra Papaioannou, Laurel Young

    Research output: Contribution to journalArticlepeer-review

    13 Scopus citations

    Abstract

    Objectives: This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care. Design: A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use. Settings and Participants: Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use. Measures: Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution. Results: The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff. Conclusions/Implications: Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up.

    Original languageEnglish (US)
    Pages (from-to)262-267
    Number of pages6
    JournalJournal of the American Medical Directors Association
    Volume20
    Issue number3
    DOIs
    StatePublished - Mar 2019

    Keywords

    • End-of-life communication
    • advance care planning
    • nursing home
    • palliative care

    ASJC Scopus subject areas

    • General Nursing
    • Health Policy
    • Geriatrics and Gerontology

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