Table 2.

Illustrative quotations supporting each theme

Theme	Participant quotations
Lack of agency undermining ability to seek care
Obscurity of symptoms	“I could hardly lift him up. He was so puffy, and …we didn't know until I noticed that he wasn't walking normally.” Female, 39 yrs. “They really didn't know what it was at the time because his kidneys were so small that they couldn't really pick them up on the ultrasounds … it was a long like week or 2 of just not really knowing and just understanding that there was something wrong with his kidneys, but we didn't know what” Female, 24 yrs.
Uncertain and confused about care processes	“We could have done with more help around the management of our case. We were left to bring everything together at times or that's how it felt …that's probably the biggest issue that we had.” Male, 32 yrs. “I cried … because I cared about the aftercare. What am I facing? What do I have to do? What happens if it (the feeding tube) pops out? No one told me any of that.” Female, 38 yrs. "It was very hard. You had to kind of squish all your information into a very short amount of time because obviously they need to see numerous people throughout the working day. Um, so I found I didn't necessarily get to everything that I needed to. Yeah. And so, they would leave and then it would all come back into my head and just stay there.” Female, 35 yrs “We were new to the country; we had been in Australia for a month. That was a very tough experience for us and also the language barrier and the cultural barrier was a bit of an experience. …for example, when we ask for copies of blood results, the nurses wouldn’t give it to us and there is a way of asking for it... but I don’t know (how to ask).” Female 39 yrs.
Vulnerable and unable to advocate	“I didn't really feel like I was in control. I felt like I didn't have that 100% choice in choosing whether my daughter wanted to have the PEG (feeding tube) or not.” Female, 38 yrs. “You often get pushed aside as a parent by some doctors, not all, some doctors are amazing and very encouraging and speak with you and want to know more and a 100% believe what you say, but you get other doctors that want to dismiss you.” Female, 28 yrs. “You're allowed to say okay, this treatment plan isn't working okay, my child is clearly still in pain, I want more pain medication. It took me so long to learn to speak up confidently. (Name of child) definitely went through situations where he unintentionally suffered.” Female, 28 yrs.
Losing trust in clinicians
Confused by inconsistencies and ambiguities in advice	“There were a lot of inconsistencies coming from different medical staff about various issues we had. People saying …. we’ll be able to sort that out and work that out. And then somebody else turning around and saying, no, that's not possible.” Female, 35 yrs. “I feel like when you are seeing so many different specialists and all the issues sort of blur together, it's really hard to keep up with who's saying what and what's okay with one person and the other person. So, I was having a lot of like, oh this person said this and then they'll be like, oh, but that's irrelevant for this or whatever.” Female, 35 yrs.
Distressed by lack of collaborative care	“They just kept on sending us home with silly things. ...everybody knew there was something not right. Her bloods were showing that she had acidosis and all the rest of the jazz. But they weren't proactive in actually having a look at what was going on behind it and getting (name of hospital) involved and getting the renal specialists involved.” Female, 36 yrs. “It's becoming very much to the point where I don't want to have to deal with the hospital up here because they keep brushing my son off, and they're making my son worse.” Female, 33 yrs. “Because we weren't being listened to, we weren't being heard, we were in a regional center, so they have a lot of churns with locum pediatricians. So, we didn't have any consistency from that point of view either. We kept seeing different doctors every time, so (name of patient) was really unwell by the end.” Female, aged 39 yrs
Exasperated by organizational rigidity
Frustrated by bureaucratic roadblocks	“You know, the system is too bureaucratic. It seems like bullshit to get through. You never get to the hard and fast fact of what you're eligible for, what you're entitled to, what the outcome will be. No one ever knows. It's almost like you go out there as a guest to what you can find. That is the failure of the system.” Female, 50 yrs. “You can't always get them (appointments) on the same day. And if I can't then I have to stay at the Ronald McDonald House overnight or …try having to come back twice in 1 week (which) is basically impossible.” Female, 34 yrs.
Lack of access to expert and quality specialist care	“We were up in (name of regional center) so when you present to ED, then they usually get the pediatric team down to see you. But most of the pediatricians that we were seeing were locums. So, we didn't have any consistency.” Female, 36 yrs. “The main concern for us is (name of child) gets sick. To get to a pediatric service hospital is a drive at least 3 or 4 hours to get there. To access a health system for a kid living in the rural remote places, it's very hard.” Male, 36 yrs.
Inadequacies of support programs	“(Name of patient) has now been needing these catheters in and out every, every night. They're super expensive to buy. There's the company that orders it (catheters) and there's the company that provides it. There were times where I was buying the catheters because I just didn't get any delivered because someone hadn't sent an email.” Female, 39 yrs. “Nobody would actually classify (name of patient) as being disabled or needing assistance. Even (name of welfare service) would not classify her as disabled even though she had a colostomy bag. And before the age 1 yr, she had a left foot amputated because she had cleft left foot. So, she's got a prosthesis as well. But they would not classify her as any form of disability.” Female, 41 yrs. “I remember the social worker recommending a few things (related to accessing Centrelink) …and I found a lot of the times they would say, oh, we'll try and find that out for you. And it would just get lost in amongst everything else that was going on. ...I can understand that from a health professional point of view…but from a parent point of view, it's frustrating because then you are kind of left with, well what do I do?” Female, 35 yrs. I did, uh, ask for few things that this social worker, um, I really wasn't satisfied with the answers; I asked the social worker and um, she said she had come back to me with the phone number (for legal aid), which took her about a week to give it to me. So, when she came back to me, I said, well, I already got it. because by then I had noticed in the kitchen that there was the phone number for legal aids.” Female 39 yrs.
Compounding burden of caregiving
Unsustainable financial pressure	“I struggled from the minute (patient’s name) was born. I couldn't go back to work. Everything got behind. It kept getting worse to the point 18 months ago I couldn't live with it anymore and I had to make that decision to declare bankruptcy. So that has majorly affected my life. It's not somewhere I thought I'd be at 30 years of age.” Female, 30 yrs. “Prior to having (name of patient), we had 2 relatively good incomes and, so to drop the one income completely was a big shock. I always had a sense of guilt that I couldn't work, and I couldn't bring in an income because I'd always brought in an income… I would like nothing more than to be able to bring in a second income.” Female, 28 yrs. “When she was diagnosed and basically being told that you've got albumin infusions twice a week, and then you always thinking back, how are we going to facilitate this? I've got two other kids, then we had to shut down our business so my husband could sort of work around the kids' schedule.” Female, 42 yrs.
Debilitating exhaustion	“And when she (the patient) was discharged that same night, I had like a stroke-like condition, where half of my body just shut down and I stayed in the hospital for the next 2 wks.” Female, 38 yrs. “I've got a disability; I couldn't sort of do everything and I was very fatigued. Like I've just had a child and then I'm running up and down the freeway and it was just chaos.” Female, 42 yrs.
Asymmetry of responsibility	“His dad, he wasn't very supportive. So, it was hard. It made it harder for me.” Female, 38 yrs. “It actually does get to the point where some days it feels like I'm trapped in medical prison because all the care falls onto me. If I'm not there (name of patient) won't get his medication. Cause my husband is too scared to make it up. And it doesn't matter how many times I show him, he won't make the medication up, which then means I'm going to go somewhere, I just can't do it without planning.” Female, 39 yrs. “I like to do it all myself…I have a file in my bag and ...it's got all of his most recent blood reports, doctors letters, ...everything, anything we need for (name of patient). Now, if I hand over the care over to his dad to do that: number 1, (name of father) wouldn't really want to do it. ...And number 2, I, I don't think it'll get done.” Female 39 yrs.
Intensifying strain on family
Uprooting to relocate	“We've had to shift because we don't trust the health service. …she ended up in ICU down in (name of location) and it still took them 16 hours to fly out. So, after that experience we kind of just went, we can't do this anymore. We need to be closer to Brisbane so we can be within driving distance.” Female, 39 yrs. “She needs to be close to a hospital so that she gets more attention. So that's why I basically started looking for newer jobs. That's why like I picked up job in (name of location).” Male, 36 yrs.
Sibling stress and neglect	“He hits, he punches, he threatens to pull (patient’s) cord out, so he dies. He's angry at me I think for sending him to live with my mum for 2 yrs and I kept the 3 little ones with me…. Threatening to break his (patient’s) arm when he had the fistula put in. Just horrible things.” Female, 42 yrs. “So, the first 3 months after diagnosis, we were living in and out of hospital…. I had to drop (sibling) off to someone to care for her during the day to get to the hospital in time.......(sibling) has a lot of anxiety, and I feel like a lot of it has come from the fact that she felt a bit abandoned. …I don't feel that her needs were being met as well as they could have been....so it's impacted her (sibling) immensely and we are still struggling with behaviors that have come out of that...” Female, 36 yrs.
Depending on family support	“They (family) provided a lot of support. …. right down to when (name of patient) had his transplant, ….and they did like a cook up of food and brought things up to the hospital cause they knew we were in hospital for a while and, brought up a little goody pack and like they, they provided a shoulder that I needed.” Female, 28 yrs. “My mom is very close with us, so if ever I need anything, she's always there to help and she takes them for a bit... And, and my sister, she's always there as well and the kids (siblings) will go over to her house, and she'll mind them.” Female, 35 yrs. “Socially we were even more isolated because, (name of patient) wasn't physically going to school either, cause you don't want to be sick when you're on dialysis… Because we didn't know anyone in the area, we were on our own. And my partner was leaving at 6, 6.30 in the morning and coming back at 6.30 at night. So, we were definitely just my son and me. And it's, it's been difficult at the same time.” Female, 39 yrs.
Building resilience and stability
Empowerment through education	“This is the patient travel service… which in the very beginning we didn't know existed. And we were ringing accommodation places …And we ended up at the (name of the accommodation), which was very close to the hospital and the ladies there actually told me about the patient travel system and said, you need to ring (name of hospital) as your local hospital. And tell them about your situation.” The psychologist came down to (name of patient) and they'd done a little book up for her so that she knew what to expect when it comes coming into dialysis. And I think that was brilliant for her because that gave her more confidence in what she was doing.” Female, 41 yrs. Families who have been in the system long term, are very, very good at what they do (accessing the hospital system).” Female 35, yrs. “And then also not knowing what services were available (when newly diagnosed) and not knowing who to ask if there was service available. Because now I'm very comfortable with the renal nurses. …I've known them 5 years now, so they're almost like friends. But at the start, I definitely didn't have that rapport.” Female, 28 yrs.
Confidence in technical and medical support	“I do speak with her (nurse) a lot. She's on to making sure we get regular appointments in (hospital) and I can contact her if I need something.” Female, 30 yrs. “We found the renal team at the hospital to be quite good. They have a smaller number of patients, you know, they are a smaller team. Access to them been very, very good.” Male, 32 yrs.