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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. 

 

 

WHAT YOU WILL BE ASKED TO DO?

 

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 julie.mcmullan@qub.ac.uk.

 

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

 

Thank you!

 

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