Families living with neurological diagnoses show unbelievable courage and resilience each day. And since it’s our mission to provide them with the tools and resources that allow their children to reach their full potential, it’s important that we take time to listen to their stories.
To learn about their diagnostic journeys, their obstacles, and their experiences with CNF programs, we ask caregivers in our network to complete the Annual Caregiver Needs Assessment. Conducted every spring, the data we gather through this assessment will help shape our programs for the next few years. For example:
- We’ve heard from many families that managing the logistics of their child’s care can be a huge burden. This has to us to develop education and resources about care coordination to help families and providers more effectively communicate.
- The data has helped us understand that shortening the diagnostic odyssey, particularly for genetic conditions in epilepsy, should be a top priority, which led us to partner with organizations such as the American Epilepsy Society to provide more education about genetic testing.
- Families have shared their thoughts and feelings surrounding clinical trials – mainly that they can be intimidating to approach. So over the next two years, we are partnering with the Child Neurology Society to educate physicians about how to discuss trials with their patients and families.
Based on the data, we know that clinical trials are incredibly important in our community and can also be intimidating, confusing, andscary. Over the next two years, we’re partnering with the Child Neurology Society to provide education and support to child neurologists in families to inform discussions about clinical trials.
Additionally, by collecting stories from more than 1,000 caregivers in our network, we are able to gather proof of what we already know to be true: no family needs to feel alone.
Though every situation is unique, there are common struggles and triumphs that parents, grandparents, and guardians share when caring for a child that they love.
Here are a few things we learned from the 2021 data. Out of 1,561 caregivers …
- 15% are caring for more than 1 child with a neurological condition
- 44% waited 3+ years for a diagnosis and/or received a misdiagnosis
- 45% deal with daily or weekly crises
- 50% need ‘some or significant’ help with finances, treatments, and access to a neurologist
- 40% need ‘some or significant’ help with getting to appointments or with insurance
- 47% are open to clinical trials, and experience a mix of fear and hope about the process
- 60% want a telehealth hybrid model for their child’s care
The 2022 Caregiver Needs Assessment is now open and accepting responses until early April. We sincerely hope that every caregiver in our network will consider participating. The information provided through this survey will ensure we are providing you – our families – with the support you deserve.
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