Table 2:

Themes with Exemplar Quotes

DISRUPTION
Participant 40: “I have to work fewer hours in the office and more hours at home. I have also had to split my day up and work into the late-night hours. I have had to give up all traveling I was doing because I am taking care of my Mom every day.” Participant 44: “I never have any down time. My whole life is work or caregiving.”
UNCERTAINTY
Interview 8: “I haven’t actually told my immediate boss that I am leaving, not because I don’t think she’d be supportive, but to be honest I was a little afraid that we would lose our health insurance early, and we have surgeries coming up, and that just made me really nervous.” Participant 47: “Taking care of them, the fact that they have NO plan for what comes next - what if something happens to one of them, if their landlord decides to sell, etc.”
Main Theme	Sub-Theme	Quote
Background and Context of Caregiving	Care Recipient Characteristics	Interview 12: “…my now eight-year-old son is a type 1 diabetic, and he got diagnosed when he was five, so we’re in our third year of dealing with it, and basically it’s a very high-maintenance disease. Nothing’s ever the same. One thing will be the same one day, and the next day it’ll be totally different.”
	Caregiver Characteristics	Interview 15: “I just noticed this from my lifetime of having immigrant parents… So I know that they answer my questions with a different kind of sense of relation to me than to my mom.”
	Environment	Interview 9: “Okay, so for me specifically I think that caregiving can fall into a couple of different categories. As a woman, as a wife, as a mother I think that there’s a high societal pressure that is placed on us to take on the emotional wellbeing of other individuals in our lives and we’re expected to shoulder that.”
Stressors	Care Recipient Health	Interview 2: “I see the long-term side effects of uncontrolled Type 1 diabetes, and it scares me so much to look at him. He’s 27, and I’m like, ‘If you don’t get this under control now, this could be really bad for you in the future. I see these patients all the time, and their lives are not pretty, and it’s not a pretty life for you, it’s not a pretty life for me, and it’s not what I signed up for as your wife-- to be a full-time caregiver in that way, either.’ And so it is really difficult, but he doesn’t see it that way.”
	Balancing Caregiver Needs and Responsibilities with Caregiving	Interview 3: “I’m a manager. So I have to manage other people as well. It’s not like an easy job where I could just be like well, I could just do my work and then I’m done. It’s always constantly. And then caregiving is constantly. So it’s like having two full-time jobs at the same time.”
	Relationship Dynamics	Interview 10: “… my whole life, she doesn’t communicate with me what’s going on with her medically. So, it’s just hard to tell sometimes. Like, I don’t always necessarily know what’s wrong, which … affects my ability to give care because like I have to just guess.”
	Employment and Finances	Interview 9: “And then even later with my special needs child, I would have gainful employment here at times, but she would have a seizure and be hospitalized and I would be at the hospital with her for a week or two weeks or whatever constantly checking in with my supervisor and being told the whole time I’m in the hospital, ‘No, no, everything’s fine.’ And then when I come out of the hospital with her I don’t have a job, so I’m back at square one and attempting to reenter the workforce.”
	Not Receiving Needed Support	Interview 12: “…at his school they don’t have a nurse there full-time, and so the office lady had given injections in the past, and he started there in kindergarten, and we didn’t feel comfortable with her doing it, and she was obviously nervous about doing it as well, so I’ve just been going to the school every day to give him his shots before lunch, and so that’s kind of hindered my work schedule.”
Caregiver Supportive Care Needs	Support from Health Care Team	Interview 8: “He’s not breathing, and I read the notes later, and the ER doctor said like ‘Mother was super-anxious about blah-blah-blah,’ and I was like ‘No. My child wasn’t breathing.’ So I guess it’s been a frustrating experience in a lot of ways, and we’ve been dismissed from specialists…”
	Support from Community	Interview 9: “ I’m involved in the community that I participate in. I participate in self help groups and grief support, things of that nature because I’m trying to take care of my own health, my own mental stability and my own growth, so that I can come back to and be that better mother that I know I’m capable of being.”
	Support Socially	Interview 1: “Every single seizure, every single generalized seizure so far, I have called my mother, who is a doctor… and she just hangs out on the phone with me.”
	Support with Work and Government Policy	Interview 1: “Yeah. I wish there was … someone who would advocate for me at work so that I knew I could keep my job and not face the consequences.”
Coping	Still figuring it out	Interview 9: “And when life happened I experienced a mental health crisis… And then there was a lot of shame and a lot of judgment and a lot of blame in my personal failure to not be able to fulfill that role as the perfect mother any longer. I’m still struggling with those specific demons and coming to grips.”
	Mental Health Treatment	Interview 10: “It’s the same therapist I’ve had since I was like 18. … they are very responsive and helpful, like managing stress and just making sure I know I’m not like crazy and my mom’s like-- her boundaries are different. So, like that person is helpful.”
	Self-directed activities	Interview 3: “I think if there was something like an app. I hate to say this but like we always are on our phones. We always have our phones with us. So something I could use on the go… I need something I can consume in my time, something that’s easy to use in my life, something that’s five minutes or less.”
	Workplace choice and flexibility	Participant 37: “I have to use creative time management skills to get all the work done, which often means working after dinner, or asking for help to complete work on time.”
	Finding people who have the same experiences	Interview 2: “When we were first diagnosed I just had a friend of a friend reach out to me and say “You know, I have a diabetic too. If you have any questions let me know,” and that was just huge, because there’s some stuff that doctors don’t know or medical staff don’t touch on, and so she was a great sounding board for me.”
Rewarding Experiences (intrinsic):	Relationships—Closeness, Understanding	Participant 46: “I love her, she’s funny it’s bonding time for the whole family.”
	Growth—Care Recipient or Caregiver	Interview 9: “I have screwed up, I’m definitely not perfect and my redemption is in the process and trying to make sure that I get to a place where my children can see that I am healing and I am attempting to make right and that would make things significantly better for them and myself.”
	Being There	Interview 3: “… the good parts are I get to spend time with her and see her.”
	Not Rewarding	Participant 40: “I just keep going, there is nothing else to do.”