Table 2. Overview of primary and secondary themes emerging from the photovoice focus groups.

Photo example	Primary theme presented in photo	Photos (n)	Participants (n)	Secondary themes discussed	Illustrative quote
Photo A	Well-being	n=15	n=6	Contributing activities/behaviours to well-beingContributing settings to well-beingReminders of LN challenges	Driving up to the mountains and just getting away is kind of like a reset… sometimes just getting away for the weekend really gets the mindset back on track and I usually do just go by myself just so I can be there and take everything in and get my mind and everything else reset. (Participant 7)
Photo B	The participant themselves	n=13	n=6	LN symptomsMedication side effectsPhysical environment challenges	Sometimes they'll have a rounded doorknob, and I’m unable to enter, and they don't have the button or anything like that. Because my hands are so stiff, and I’m unable to move them, I can't open the door. One time I locked myself in a bathroom because it was a rounded doorknob. (Participant 5)
Photo C	Healthcare experiences	n=10	n=7	Medication challengesIndividual management behavioursHealthcare challenges	It’s a struggle sometimes, because to remember when to take them, and taking everything on time, and making sure you’re taking them every day is a lot of work. As you can see there’s a lot of medications that you have to take, and each of them all have different side effects. So it’s hard managing some of those side effects on a daily basis. (Participant 7)
Photo D	Home	n=4	n=3	Emotional burdenReminders of LN challengesReminders of responsibilities (to themselves, to family)	This represents how it feels when you are trapped. I have called it an ice igloo, and looking out I promise myself that as soon as I’m able, I plan on taking off, but it’s kind of a relief that right now I don't have to, because I feel terrible. I don't feel well, and so I have an excuse for not moving…now I live with a fairly constant fear of failure. Fear that I’m not going to be able to take off and do what I once did. (Participant 3)
Photo E	Community	n=2	n=2	Transportation challengesLN symptomsAltered life trajectories	This one is just how I feel everyday living with lupus. You’re always at a crossroads, you’re always having to make a decision… you have to turn left or right, you can’t keep going straight. (Participant 8)
Photo F	Friendship	n=2	n=2	Therapeutic benefitsReminders of LN	Sometimes you have to go out in the sun, to make fun with your friends. But it’s a struggle to go under the sun, and after this… at the end of the day I was feverish, and having symptoms. (Participant 6)
Photo G	Work	n=2	n=2	Employment impactsEmployment challenges	Attempting to work from home just because it was a bad day, and I couldn't get out of bed. (Participant 1)
Photo H	Other challenges	n=6	n=4	Financial challengesChallenges of family planningChallenges associated with invisible illness	We were always told it was going to be harder to get pregnant. There’s a lot more doctors, and medication, and appointments involved, and there’s obviously a high risk of miscarriage. This is from when we had our first miscarriage, we’ve since had another one. Just the hardships that come with that… I’ve got kidney disease and it’s just one of those additional complexities that you never think of. You don’t realize how it’s going to impact your life until it does. There’s nothing you can really do about it, there’s not a lot of information either. (Participant 8)

Note: Potentially identifying components of the images have been removed to ensure participant anonymity is maintained.

LNlupus nephritis