Table 5 Engagement between participants, qualitative themes

Support and affirmation

• “That is really awesome that your [sibling] was willing to voice bank on your behalf! It is a lot of work, but personally I am glad that I did it.” (P33, PwALS)

Practical advice

• “If I may, I would suggest you reach out to the ALS Society now, rather than wait. Some of the support takes time and there are waiting lists. An example is self-managed care funding. There is a 12–18 month waiting list once the lengthy application is received. Often to receive services or equipment an OT [occupational therapist] must do an assessment and make the request on your behalf.” (P20, Caregiver)

Developing ideas together

• “I would like to add to P24’s [PwALS] comments RE mental health issues…health professionals at the ALS clinic could have a bigger role in addressing psychological issues. A simple question to open the discussion could be: How did you take the news of being diagnosed with ALS and how your family and you are managing? How and what can we do to help you now… Also, regular assessment should be done at the clinic to make sure that individuals have the necessary strength and resources to cope, regardless of where they are in their ALS journey.” (P47, PwALS)

• “I completely agree P52 [Caregiver] about transparency with tests. While it may be a scary reality for the patients, I think that being able to access test scores to compare/set realistic expectations would be helpful. My [PwALS] is trying to live in the moment and not dwell on what is to come. Unfortunately, that has led to most major changes becoming urgent matters.” (P59, Caregiver)

“P59# [Caregiver], I have gone so far as to take screen shots of breathing test scores to check and to compare to past tests. Like your [PwALS], my [PwALS] likes to live in the moment. When the progression is quicker, I can see how this may lead to dealing with things as they become urgent. There is such a fine balance between living with independence and accepting help before it is needed.” (P52, Caregiver)

“P52 [Caregiver], there are times when I feel like this disease isn't moving fast and we get into a routine with our 'new normal.' Then, seemingly overnight, everything changes. I am constantly on edge just waiting for the next emergency…You are right, it is definitely a fine balance!” (P59, Caregiver)