Table 7 Participant experience, qualitative themes

Methodological elements

 Moderator role

• “I have appreciated the back-and-forth discussion with the reflections, especially [the moderators’] comments that tell me you have read and heard my input. I have found that sometimes the clarifying questions coming back to me stimulate me to think more.” (P1, Caregiver)

 Peer interaction

• “The ability to see other participant's responses and sometimes get a bit of conversation going was a nice difference from other studies that were simply questionnaire or interview based.” (P4, PwALS)

 Flexibility

• “I like the format of this focus group. The pressure of immediate response can affect the way I interact.” (P61, PwALS)

• “This online focus group study has been much easier to do than a previous one that I did in-person. It enabled me to log on any day or time of day to reply to the questions or just read some of the other replies.” (P78, Caregiver)

 Study duration

• “I found the study a little bit too long, with some of the topics a bit overlapping.” (P33, PwALS)

• “[The focus group] was long, but it allowed for continuity and a sense of membership. As I read the topics, reflected on my [PwALS’] and my experiences, and figured out how to write things down in a way that made sense to others, it was good to think that I didn't have to reflect on the totality of these experiences in one long questionnaire. I think this longer, staged methodology worked well for this type of reflective input.” (P38, Caregiver)

Personal benefits

 New reflections or conversations

• “This [study] has been really good at helping me to discuss issues with my [PwALS], so we can explore the options available. We will continue to live and function, but we need to be more realistic in our future planning.” (P91, Caregiver)

 Learning from peers

• “What I found useful for building mental fortitude is learning and sharing the stories of other people with ALS, like many in this group. When P114 [PwALS] describes how he deals with his secretions and how that battle line is advancing, I learn something about survival skills.” (P49, PwALS)

 Altruism

• “I am sharing our experiences so the healthcare system and its professionals can see what it looks like from our vantage point. People were kind and tried their best, but I'm grateful for this study so they can learn and adapt their current practises. If our experience helps others so they can adapt and learn from our challenges, then I'm glad to share our story.” (P124, Caregiver)

Technology

• “The platform was difficult for me because I use an eye gaze computer. It’s low resolution so that meant a lot of scrolling left and right. Plus, selecting questions could be difficult because of the precision required. I also preferred, in many cases, composing my answers offline and copying and pasting it.” (P68, PwALS)

• “It was simple to navigate, even for a computer dinosaur like me.” (P114, PwALS)