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COCOON study - Phase 2

If you have experience receiving or providing children’s home healthcare during the COVID-19 pandemic, we want to hear from you!


Are you…

  • A parent or family caregiver of a child with a rare disease and/or complex care needs who receives home healthcare services, OR
  • A children’s home healthcare practitioner providing care in the home during the pandemic to children with rare diseases and/or complex needs, OR
  • A children’s home healthcare agency providing care in the home during the pandemic to children with rare diseases and/or complex needs


If so, we would love to hear from you!


As part of the COCOON study we are conducting interviews with the above groups to discover the impact COVID-19 has had on home healthcare services for children with rare diseases and/or complex needs. 


Homecare services for this study include:

  • Nursing
  • Personal support work
  • Respiratory therapy
  • Physiotherapy
  • Occupational therapy
  • Dietician services
  • Social work


Our goal is to bring attention to home healthcare services for this unique population of children and their families, and gather real-time information to help address concerns, challenges and gaps experienced by families and health care practitioners during the pandemic. 





You will be asked to participate in an interview, approximately 30-45 minutes in length.  This will take place virtually via Microsoft Teams on a day and time suitable to you.


As a token of appreciation for participating in the interview, you will receive an electronic gift card valued at £10.


If interested in participating in this study, please contact our research fellow, Julie McMullan at


Further information on this study can be found here COCOON study: home & community delivered care | Rare Disease Focus: supporting rare disease throughout all communities (


Thank you!


Photo: AJ McKnight
AJ McKnight
Centre for Public Health, QUB
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For more information, please do get in touch via email