Chronic kidney disease (CKD) has a major impact on the lives of children and adolescents, and their families. Aside from the burden of care and financial impact, caring for a child with CKD further involves juggling around several care settings. While there is plenty of information and support available, it can be very overwhelming for carers to navigate through this complex healthcare system.  NAVKIDS2 is a research program aimed at determining the effectiveness of  a patient navigator program in supporting patients and their families through their CKD journey.

What is a patient navigator?

A CKD-Care patient navigator is a trained professional who helps children with CKD and their families by supporting their care needs within the health care and community setting. Navigators support patients one-on-one to identify their needs and help find services and resources to address these needs.

Goals of the NAVKIDS² program

The purpose of the NAVKIDS2 is to see if a patient navigator program is beneficial for children with CKD and their families who are facing financial hardships or are from remote geographical locations.

Who can be involved?

Children and adolescents aged between 0-16 years with any stage of kidney disease, on dialysis, or those with kidney transplant that are from families facing financial hardships or remote geographical locations.

What does the study involve?

Children and their families enrolled in the NAVKIDS2 program will be assigned a patient navigator for 6 months to help them through their CKD journey. The program is completely free and voluntary – in return children and their families will be asked to complete some questionnaires and health assessments over a period of up to 12 months. As we are trying to identify the benefits of a patient navigator, some patients will have to wait 6 months for their patient navigator – this will allow us compare patients with a navigator to those without one. We can later use this information to encourage hospitals and kidney health centres to provide patient navigator programs in the future. Contact us if you would like more information about what is involved.

Having a holistic understanding of how chronic kidney disease affects both children and their families matters to us. We know that families are affected emotionally, logistically, and financially. It's not always possible to share all this in a 30 minute consultation, though, so taking the time to figure out what really happens behind the scenes and the ways that the clinical team can provide meaningful long-term support is key.
A lot of the government services—getting support—respite or things like that—they are so hard to get and they take so long, you give up. At the moment, I have given up on just about all of them because it takes so much energy out of you and it is so upsetting. So you just learn to deal without them. Now I haven’t been bothered to call them for the past two years because whenever you call them, they just always have an excuse, never return your calls—you’re not entitled because there’s people who are worse than you. It’s just not worth it so we just don’t bother.
Mother, 30s
We did eventually get a. I think it was called special childcare benefit, just where your childcare fees are covered for I think it’s 12 or 13 weeks. But things like that, we weren’t ever aware of until another nurse told us about them. Because she had been in a situation where she’d had an unwell child as well and needed to do that. But those things, there seems to be a lot of benefits and things that you aren’t told about that — because that really helped at a time that we really needed it, because yeah going from paying say $120 a week for just preschool and day care to having three months of it paid for.
Mother, 20s