Understanding vulnerability and resilience among young informal caregivers of persons with neurodegenerative disease

What is this Study about?

The purpose of this qualitative interview is to better understand the lived experience of youth and young adults who take on the caregiver role. Although surveys are important to establish relationships between variables, the voice of the caregiver may be lost. As such, we are interested in learning about your experience, in your own words. A total of 20 caregivers will be recruited for this qualitative study.

What Will Happen in This Study?

As a participant, you are being invited to engage in a one-hour interview with a researcher, using the Zoom platform. Questions include:

1. In your own words, what does it mean to be a caregiver?

2. How has being a caregiver influenced or changed your life choices?

3. How does caregiving contribute to your level of stress or overall wellbeing?

4. How has this role contributed to your relationship with the care recipient?

Who is Eligible to Participate in this Study?

  • Be between the ages of 16-25
  • Identify as a young caregiver of person(s) with neurodegenerative disease such as dementia (e.g. Alzheimer’s disease), Parkinson’s disease, multiple sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), or Huntington’s disease) OR neurological disease such as a stroke or brain tumor
  • Have no hearing and/or vision impairment that is not corrected
  • Have access high speed internet connection to ensure that you can complete the study (in this        case, Zoom)

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