Stroke Research Staff’s Experiences of Seeking Consent from People with Communication Difficulties: Results of a National Online Survey

Abstract

Background: The process of obtaining informed consent from people with communication difficulties is challenging. An online survey was conducted to explore the experiences of stroke research staff in seeking consent from this population. Objectives: To identify how stroke research staff seek consent from people with communication difficulties, potential barriers to effective practice, and ways to improve practice. Methods: All research staff working for the National Institute for Health Research Stroke Research Network in England were invited to complete an online questionnaire. Data were collected anonymously between March and June 2013. Quantitative data were analyzed using descriptive statistics, and qualitative data were coded using thematic analysis. Results: Seventy-five research staff responded, corresponding to a response rate of 10%. There were 97% who had sought consent from people with communication difficulties and 52% did this regularly; 65% had received training in consenting this population. Most staff were aware of appropriate methods for supporting communication needs, but only 18% regularly used accessible information and 35% regularly used augmentative communication techniques. Lack of specific training and lack of access to ethically approved materials were suggested barriers to using these methods. Respondents indicated that people with impaired communication may be excluded from the consent process because they are not eligible for inclusion in studies or because assent is obtained from third parties. Conclusions: For research staff to work more effectively with this population, study protocols need to be more inclusive of people with communication difficulties, and staff need better access to ethically approved, accessible communication resources and appropriate training.

Keywords:

• aphasia
• communication
• consent
• stroke