How to communicate bad news to caregivers of patients with amyotrophic lateral sclerosis

a human challenge

Research output: Contribution to journalArticle

Abstract

In patients with amyotrophic lateral sclerosis families require assistance especially when bad news needs to be faced. We developed a binary items talk protocol on various aspects of the disease at its late stages to be submitted to caregivers: it was also aimed at identifying the personality of the caregiver. The report was prepared as a 6-question score (0→10). Thirty-three subjects were identified. The caregivers' ability to help the patient, the satisfaction after talk and level of comprehension were: 7.6, 7 and 6.4, respectively. The mean level of calm and confusion was 6 and 4.7, respectively. The average number of meetings was 2.33±1.1; 22% of caregivers needed only 1 meeting, 39% two and 39% >2. The average total time for the meetings was 54±26 min. A simple bad news communication protocol dedicated to caregivers of patients with amyotrophic lateral sclerosis may be used on a routine basis.

Original languageEnglish
Pages (from-to)1-6
Number of pages6
JournalJournal of Medicine and the Person
DOIs
Publication statusAccepted/In press - 2010

Fingerprint

Amyotrophic Lateral Sclerosis
Caregivers
Confusion
Aptitude
Patient Satisfaction
Personality
Communication

Keywords

  • Amyotrophic lateral sclerosis
  • Caregivers
  • Talk protocol

ASJC Scopus subject areas

  • Health Policy

Cite this

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abstract = "In patients with amyotrophic lateral sclerosis families require assistance especially when bad news needs to be faced. We developed a binary items talk protocol on various aspects of the disease at its late stages to be submitted to caregivers: it was also aimed at identifying the personality of the caregiver. The report was prepared as a 6-question score (0→10). Thirty-three subjects were identified. The caregivers' ability to help the patient, the satisfaction after talk and level of comprehension were: 7.6, 7 and 6.4, respectively. The mean level of calm and confusion was 6 and 4.7, respectively. The average number of meetings was 2.33±1.1; 22{\%} of caregivers needed only 1 meeting, 39{\%} two and 39{\%} >2. The average total time for the meetings was 54±26 min. A simple bad news communication protocol dedicated to caregivers of patients with amyotrophic lateral sclerosis may be used on a routine basis.",
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