Young carers’ perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study
Marianne Saragosa, Shoshana Hahn-Goldberg, Yona Lunsky, Jill I Cameron, Isabelle Caven, Susan Bookey-Bassett, Kristine Newman, Karen Okrainec · 2023
Read Young carers’ perspectives on navigating the healthcare system and co-designing support for their caring roles: a mixed-methods qualitative study by Marianne Saragosa, Shoshana Hahn-Goldberg, Yona Lunsky, Jill I Cameron, Isabelle Caven, Susan Bookey-Bassett, Kristine Newman, Karen Okrainec (2023) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/pmc-10729167.txt.
Description
Marianne Saragosa and co-authors asked young carers how health care treats them and what help they want in 2023. Young carers give regular, heavy care, often more than an adult helper would. Their dealings with clinics and hospitals were little known.
Interviews and focus groups with eight young carers ran in 2022, then a co-design workshop built on their words. Three themes emerged: finding their way in the system as carers, being kept out of the loop, and care slowly becoming normal life. The workshop sorted wishes into supports aimed at carers and moves to raise awareness inside the system. The study argues carers should help design the services meant for them.
Catalog record
| CREATOR | Marianne Saragosa, Shoshana Hahn-Goldberg, Yona Lunsky, Jill I Cameron, Isabelle Caven, Susan Bookey-Bassett, Kristine Newman, Karen Okrainec |
|---|---|
| YEAR | 2023 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 43 KB |
| VERSION | 1.0 |
| LICENSE | CC BY 4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |