Table 2 Example quotes showing negotiation between person/parent of a child with a MRCD and other stakeholder groups
Negotiation of the person/parent of a child with mito and … | Example quote |
|---|---|
Mito specialist services | It's been a little back and forth with [mito] specialists trying to get a concrete solution … I'm trying to paste together now a holistic management approach. Yeah. But I find that there’s a lot of back and forth with specialists and all that does is make us walk away more confused actually to be honest. [ParentFG0109P13] |
Generalist health services | Facilitator: And is your psychologist part of your mito team or are they somebody that you’ve found yourself? P11: Found myself. Not part of the mito team [at the hospital clinic] but very mito aware. [AdultFG1507P11] |
Social services | We had a lot of trouble with that [accessing social support], a lot of trouble. It took us 12Â months, firstly we were rejected by the NDIS [National Disability Insurance Scheme]; we appealed, and you know that all takes months and months that was 12Â months before we even got any funding to do anything. [ParentFG2306P1] |
Work | I have had to work with my manager at work to make sure I’m in a building that has a lift [because] I don’t do stairs, and that I don’t have a significant walk to get to the building. [AdultFG0307P9] |
Schools | My kids, they have learning disabilities and the neurologist tried writing to the school to enforce the [teachers] to help monitor the food intake but it's a fight! I'm still actually fighting the school now about food intake and monitoring their health. It's a fight. [ParentFG2306P4] |
Family and friends | My wife’s become pretty handy, umm, she now pretty well mows the grass and yesterday she was hanging blinds and all that sort of stuff… I had my father coming down the other week to do palings on the fence, you know, 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. [AdultsFG0307P8] |
Informal support services | With rare disease trying to reach out to people the same or similar was very important for us. Trying to find the right things to do and the right support we need. So yeah, absolutely reaching out internationally. [ParentFG2306P2] [We] didn’t get any guidance or anything. Just researched a lot through the Mito Foundation and other support groups that came up about exercise. [ParentFG2306P4] |