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

*Corresponding author for this work

Research output: Contribution to journalArticle

2 Citations (Scopus)
75 Downloads (Pure)

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
JournalJournal of the American Medical Directors Association
Early online date21 Dec 2018
DOIs
Publication statusEarly online date - 21 Dec 2018

Keywords

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

ASJC Scopus subject areas

  • Nursing(all)
  • Health Policy
  • Geriatrics and Gerontology

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    Sussman, T., Kaasalainen, S., Lee, E., Akhtar-Danesh, N., Strachan, P. H., Brazil, K., Bonifas, R., Bourgeois-Guérin, V., Durivage, P., Papaioannou, A., & Young, L. (2018). Condition-Specific Pamphlets to Improve End-of-life Communication in Long-term Care:Staff Perceptions on Usability and Use. Journal of the American Medical Directors Association. https://doi.org/10.1016/j.jamda.2018.11.009