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Table 3 Exemplar quotes from the focus groups showing cross-cutting themes within the overarching concept of negotiation of care

From: The long and winding road: perspectives of people and parents of children with mitochondrial conditions negotiating management after diagnosis

 

Negotiation with MRCD (“mito”) specialist health services

Negotiation with non-mito specialist health services

Negotiation with social services

Negotiation with informal support networks

Support from family and friends

Impact of cost

The advice I’ve had from the mito professionals has been the CoQ10 [supplement] only. Anything else they have said to me just makes my week really expensive

[AdultFG0307P8]

…the cost, and because it seems to be so crucial to the management, it’s just, then this incredible cost that, so I can’t exercise yeah unless it’s supervised, so that’s either with my partner or the exercise physiologist and you know, that’s been difficult and challenging to do [AdultFG0307P9]

… the sort of chronic disease management plans only get you a half a foot through the door really, umm, and there’s after that, unless you’re deemed to have a, meet the criteria for the NDIS, then it’s just out of your pocket. AdultFG0307P9]

… overall, the NDIS has been amazing for us because we were struggling to afford the therapies that [my child] needed and so it has been great from that point of view but there are some significant issues with the system. [ParentFG0109P13]

 

I do think there are benefits to the NDIS, I don’t think that we would be able to manage [financially] as a couple [without it]. I’d feel a bit guilty having to put that on my partner a lot of the time, where already relationships are difficult, so I think like, that would pose a lot more stress on people without NDIS. [AdultFG0307P5]

Uncertainty

You get the feeling that there hasn’t, there’s no sort of consensus on, this is the path we’re going to follow

[AdultFG0307P8]

They tried but they didn’t really have much of an idea, though they did try. [AdultFG0307P7]

 

Ah some of the social forums mention them [supplements]. There’s a lot of mixed messages we’re getting about whether they benefit or they don’t. Some people swear by them, some people can’t see any benefits. [AdultFG0307P5]

Well initially because [child with MRCD] wasn't expected to live there was no plan, and of course when [the child] did live then it was, well, just do the best that you can, so we're talking [many] years ago.[ParentFG2306P3]

Trust

They’ve got a contingency plan of, you know in 12 months from taking that, if that doesn’t work [MRCD specialist] has a plan of [supplement] um, adding that to it

[AdultFG0307P9]

Participant: Fatigue is an issue which has been much improved by [MRCD specialist’s] suggestion … and that has absolutely revolutionised my life

Facilitator: So a lot of your guidance has very much come from [MRCD specialist] and the clinic in [city 1]. So are you staying under their care now you've moved to [city 2]?

Participant: Oh yes, I have a telehealth appointment with [MRCD specialist] in a month. [AdultFG0307P12]

[My child] had to go in for tonsils and I said to them “please contact the [MRCD specialist] team regarding anaesthesia and everything else.” “Nah, nah. Don't worry—he'll be fine.” Well, he wasn't fine. [ParentFG2306P4]

Everybody is just throwing darts, and oh it might be this, we can try that, the next person it will be something else, and the next person will be something else. [AdultFG0307P8]

The hospital physios were amazing and so they were very open to suggestions from the doctors and worked closely with the doctors. It was a very different story when [child with MRCD] hit 2 and we moved outside of the hospital environment to more of those you know therapy focus type organisations

[ParentFG0307P5]

The first social worker we had come to the house threw his hands up, had tears in his eyes, and said “I don't even know where to start”, and left because our need by that stage was so great. It was hard and I'm not telling anybody else anything new, it's hard. [ParentFG2306P3]

That's how I found the Mito Foundation—it was through Doctor Google and I'm so grateful I did because they sent out a package, they sent out something for the school, they sent out something for the GP. [ParentFG2306P4]

It’s just really fallen back to family. For me personally I’ve had no external avenue to get any assistance. I’ve had to basically just call on family to come and do things

[AdultFG0307P8]

Transition from paed to adult services

The paediatric people are usually the people that know about [the children with MRCD’s] diet, diets and things like that. And that’s the only person we’ve heard of, which is a few hours from us, and yeah, we’ve not been able to get in because [person with MRCD] is 21

[AdultFG0307P7]

    

Trial and error

We try and do it all naturally with [certain foods] and stuff like that, we try and hit… and they do a blood test every now and again to see if that's helping the Lactate levels and things like that. So we are measuring as we go along. It's a bit experimental. [ParentFG 0307P5]

The advice I was always given was try it [supplement] for six months and then come off and see what happens. [AdultFG0109P13]

I'll never forget the first meeting with a dietitian. She said “if you get this wrong [your child is] going to die”. That was frightening. So yeah I just started asking everyone what do you do? Help! And there was a lot more diagnosed [overseas] and they sent through what they had been given what they've got from their dietitians—what they got, so that's how it all kind of started

[ParentsFG2306P4]

  

My [relative] fortunately, is an ex [nurse] … and she’s taken it upon herself to do a hell of a lot of reading on my behalf and we’ve played a bit of trial and error on a number of different supplements. [AdultFG0307P8]

  1. MRCD = Mitochondrial Respiratory Chain Disorders or “mito disease”; NDIS = National Disability Insurance Scheme)1