Who is carrying out the QUALYCARE-NI study?
QUALYCARE-NI was carried out by researchers in the Centre for Public Health, Queen’s University Belfast. The Northern Ireland Statistics and Research Agency (NISRA) have also been involved in the study, through the identification of people who registered the death of someone who had died from cancer, by using the Death Registrations Database. The Principal Investigator is Dr Anna Gavin and the Study Coordinator is Mrs Deirdre Fitzpatrick. The participant recruitment phase of the QUALYCARE- NI Study is now complete and the study report ‘Dying with Cancer: Perspectives of Bereaved Relatives and Friends was launched on 15th May 2015. Further analysis of the data collected is being carried out for preparation of scientific papers to be submitted to Peer-reviewed Journals.
What did taking part in the QUALYCARE-NI study involve?
Study packs were sent out by NISRA on behalf of the research team to the person who notified the death, to invite them to take part. If they felt that they were not the most appropriate person to complete the questionnaire, they were asked to pass it on to someone who was. The pack contained a study information leaflet, a leaflet from Cruse Bereavement Care, a decline slip and freepost envelope, and a questionnaire and freepost envelope. The questionnaire took approximately 60-90 minutes to complete and was separated into convenient stages to aid completion. Once completed the questionnaire was returned to the researchers at Queen’s University Belfast using a freepost envelope. For those invitees who did not wish to participate, there was a decline slip to return to NISRA using a freepost envelope provided within the study pack.
Can I be identified from my questionnaire?
The NISRA identified eligible bereaved relatives from the Death Registrations Database as being the person who notified a cancer death. Once identified, NISRA assigned each potential participant a study identification number. No personal contact details were passed on by NISRA to the research team and at no time will research staff have participant details without their consent. Therefore all questionnaire responses remain are amonymous.
Will the information I give be treated confidentially?
Yes, the researcher will treat all returned questionnaires in a confidential manner. They are filed in a locked cabinet, within a locked office, within the secure environment of the Queen’s University Belfast. The NISRA staff have an undertaking of confidentiality as part of their work, whilst the QUALYCARE-NI research staff at are all required to sign a confidentiality agreement and adhere to policy on security, confidentiality and issue of data.
Who is organising and funding the QUALYCARE-NI study?
The QUALYCARE-NI study is being carried out by researchers in the Centre for Public Health, Queen’s University Belfast and has received funding for this study from Cancer Focus Northern Ireland (formerly known as the Ulster Cancer Foundation). The QUALYCARE-NI Study has been reviewed by an independent group of international scientists and approved by the NHS Research Ethics Committee.
Who do I contact if I have any queries about the study or require help?
For further information on the QUALYCARE-NI study or the report, you may contact the study coordinator, Deirdre Fitzpatrick, on 0800 328 6039 or email.