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Research Study - Assessment of the needs of childhood cancer survivors in Ireland and their parents/guardians/carers

 

What is the project and why are we doing it?

We are looking for participants for on-line focus groups to collect information about the needs and preferences for care and long term follow-up of survivors of childhood cancer and their parents/guardians/carers.

This study is responding to one of the recommendations of the National Cancer Strategy for Ireland, that the HSE National Cancer Control Programme, (NCCP), conduct a Cancer Survivorship Needs Assessment (National Cancer Strategy 2017-2026, recommendation 41). The study builds on previous research conducted in 2018 by Dr Peter Barrett for the NCCP where a small number of focus group sessions were held with adult Irish childhood cancer survivors, their parents/guardians/carers and interviews were held with cancer service providers. An acknowledged limitation of this previous research was that some cancer survivor subgroups were under represented including brain tumour, solid tumour and leukaemia diagnostic subgroups. Our project aims to capture information from a wider sample of cancer survivors including the previously under-represented cancer subgroups. The information will be used to ensure the needs and preferences are reflected in the development of the Survivorship Service for childhood cancer survivors in Ireland.

Who can take part?

The following people are eligible to participate.

Any person who has been treated for a childhood cancer in Ireland in the last 20 years (diagnosed in 2001 or later) and:
- is ≥ 14 years of age currently
- 2 years or more following completion of active treatment and no longer receiving treatment for cancer
or

- Parents of a child who has been treated for a cancer in Ireland in the last 20 years (diagnosed in 2001 or later), whose child is 2 years or more following completion of active treatment and no longer receiving treatment for cancer.

We hope to capture the perspective of those childhood cancer survivors who are less than 14 years of age, through the participation of their parents/guardians/carers.

 

What can you do to find out more and indicate your interest in taking part in a focus group?

Please email either katherine.gavin@olchc.ie or frieda.clinton@olchc.ie and we will send you detailed information about the project, a Consent Form (and Assent Form if you are aged 14-17 years old), and Privacy Agreement to be completed and returned to us.

Childhood Cancer Survivorship Study A5 flier

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