Communication Styles of Persons with ALS as Recounted by Surviving Partners

Abstract

The purpose of this study was to describe the communication patterns of individuals with Amyotrophic Lateral Sclerosis (ALS) as reported from the surviving spouses’ perspectives. Six surviving spouses of people with ALS participated in semi-structured interviews after the deaths of their partners. The interviews were transcribed and coded. Data analysis revealed four primary themes: communication styles, augmentative and alternative communication (AAC) use, decision-making, and lifestyle changes. Spouses described unique changes in communication styles as their partners began to use augmentative communication strategies and devices. AAC devices were described as essential for individuals with ALS with respect to decision making and maintaining social roles. Spouses stated the importance of adapting social activities in order to maintain involvement in the community as well as with family and friends.

Keywords::

• Amyotrophic lateral sclerosis
• Augmentative and alternative communication

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this paper.

Appendix A: Interview Protocol

Surviving Partners’ Perceptions of Communication Changes during ALS Progression

Introduction

Thank you for meeting with me today to share your personal experiences. I am meeting with you today because we are interested in finding out more about partner’s perceptions of communication changes during the progression of ALS. Your experience with this topic is very important, so feel free to provide as much information as you can. I will be recording our conversation, but I will also be taking some notes while we are talking. The recording helps me get an accurate transcript of our conversation. The recording and all original data will be completely confidential and identifying information will not be used in the final report.

I’m going to ask you some questions about your husband’s/wife’s communication style. I want to get a picture of how your spouse communicated before and after the diagnosis of ALS with different people, about different topics and in different environments.

Questions

• 1. Could you describe for me your husband’s/wife’s communication style in a typical conversation with you?

• How did he/she communicate at home (e.g., introvert/extrovert, he/she joked around often, talked on phone frequently, talked to you about his/her work day)?

• 2. Could you describe your husband’s/wife’s communication style in a group (social situation)?

• Describe their style at church, party, or work.

• 3. Could you describe your husband’s/wife’s communication style with your children and/or grandchildren?

• 4. Could you describe your husband’s/wife’s communication style with close family and friends?

• 5. Could you describe your husband’s/wife’s communication style in a typical conversation with you as communication began to deteriorate?

• What specific ways did you first notice his/her communication changing (e.g., became more quiet, less/more joking around, eagerness to talk changed, more/less talking about his/her work day)?

• 6. Could you describe your husband’s/wife’s communication style in a typical conversation with you after verbal communication was no longer effective?

• What specific ways did you first notice his/her communication changing (e.g., became more quiet, less/more joking around, eagerness to talk changed, more/less talking about his/her work day)?

• 7. Could you describe your husband’s/wife’s communication style in a group after communication deteriorated (social situation)?

• How, specifically, did communication change at church, party, work?

• 8. Could you describe your husband’s/wife’s communication style with your children and/or grandchildren after verbal communication was no longer effective?

• What specific changes did you observe?

• How did they interact/communicate?

• 9. Could you describe your husband’s/wife’s communication style with close family and friends after verbal communication was no longer effective?

• A specific example?

• 10. Could you describe how you communicated about important decisions before ALS?

• Buying a car or major appliance, healthcare decisions, children, care of older parents

• 11. Could you describe how communicating about important decisions changed as communication began to deteriorate?

• Could you describe a specific example?

• 12. Could you describe how communicating about important decisions changed after verbal communication was no longer effective?

• Could you describe a specific example?

• 13. What were the strategies you used to communicate when communication became more challenging (e.g., gestures, single commands, writing, pictures)?

• 14. Did the strategy change depending who your partner was talking to or where they were talking? How?

• Grandchild or Wife. Living room or Restaurant. Specific example?

• 15. How did you decide that it was time to seek advice about alternate modes of communication? (i.e., verbal communication was no longer as efficient)

• 16. Was there a specific event that triggered it? Could you describe the event?

• 17. Could you tell me about the processes you went through when getting your AAC device?

• Can you give me an example of when it worked well?

• When it did not work?

• Describe your thoughts about the “process.”

• 18. How did your partner’s use of an AAC device change interactions with other people?

• For better or worse, more interaction with other people, or in more environments. How did he/she feel about using a device?