Table 6 Moderator posts, qualitative themes

I ‘hear’ you

 Positive affirmations

• “I’m with you both on this P68 [PwALS] & P4 [PwALS]. The ALS society is invaluable – and they certainly are filling gaps in the health care system.”

 Neutral acknowledgments

• “Hi P122 [Caregiver], Thanks for sharing about the topics you would or wouldn’t talk to a health professional about.”

 Empathetic response

• “I’m so sorry to hear of all these challenges that COVID has brought to your family, P92 [Caregiver]. I’m also really sorry to hear how unsupported you feel in terms of the health professionals.”

 Engaging with unrelated topics

• “Gorgeous photo! I grew up around that area and am yearning for a visit to your part of the world. It sounds like you have an amazing pile of grand-kiddos!”

Specific probing strategies

 Repeat back

• “You note the “sharing of information” as a problem. Do you see this as a breakdown in sharing between doctors, or between you and doctors?”

 Summarizing

• “It sounds like in response to health professionals' lack of awareness you're wondering if you should have filled that information void via the internet. Am I putting words into you mouth'? Or does this sound right to you?”

 Reference to other participant’s perspectives

• “P84 [Caregiver] mentioned previously that some of the supports for his [PwALS] took a long time to get. Do you feel supported to get your team’s recommended strategies implemented in time for them to be useful to you and your [PwALS]?”

 Inviting group input

• “I’m wondering what others in the group think: Do you think it’s helpful if doctors were more open about ALS as a potential diagnosis? Or is it better to wait until it is confirmed?”