Studies In Progress

Hope: The complex journey of parents of children with cancer

Investigators & Staff: David Nicholas, Maru Barrera, Eric Bouffet, Ahmed Naqvi, Norma D’Agostino, Anne Marie Maloney, Jocelyne Volpe, Laura Beaune, Karen Ghelani, Maria Rugg, Deborah Berlin-Romalis, Patty Martinez, Karen Fung, Sonia Lucchetta, Wendy Shama, Karen Sappleton, Jenny Shaheed

This study is part of a program of research aimed at improving the quality of psychosocial care for young people who have been recently diagnosed with cancer and their parents.  It focuses on parents’ perceptions of hope, the role that hope plays in parents’ choices on behalf of their child as well as the transformations of hope over the course of their child’s treatment and changing health.  This innovative study will provide a vital foundation for future research and quality care for children with cancer, by providing a greater understanding of how parents of children with cancer perceive hope, and the role that hope plays in parents’ decisions on behalf of their child

Funding Agency

CHIR and B.R.A.I.N. Child

Summary

This study is part of a program of research aimed at improving the quality of psychosocial care for young people who have been recently diagnosed with cancer and their parents.  It focuses on parents’ perceptions of hope, the role that hope plays in parents’ choices on behalf of their child as well as the transformations of hope over the course of their child’s treatment and changing health.  This innovative study will provide a vital foundation for future research and quality care for children with cancer, by providing a greater understanding of how parents of children with cancer perceive hope, and the role that hope plays in parents’ decisions on behalf of their child

A sample of 35 parents of children who have been recently diagnosed (within 3 months from diagnosis) with a high-risk cancer and live within 150 km of the hospital will be recruited for this project.  Parents will have been identified by a known health care professional at SickKids as appropriate for the project and a project assistant or project coordinator would contact the parents to complete consent forms and schedule an initial interview.

This study will use several tools over 5 time periods to collect information about the child and parent including information about:  the child’s functioning and activity level, parent’s hope and the impact of the child’s illness on the family.  Additionally, parent’s have the option of recording their thoughts and reflections in a customized personally diary either through a traditional hard copy version; an electronic version via a secure website or through a virtual version via a 1-800 confidential voicemail.

What we Learned

In progress

What’s Next

In progress

References

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