Neuro-oncology caregiver needs, version 1
Research type
Research Study
Full title
Development of a neuro-oncology caregiver needs questionnaire
IRAS ID
168245
Contact name
Robin Grant
Contact email
Sponsor organisation
NHS Lothian R&D Office
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Could a neuro-oncology specific caregiver needs questionnaire aid in the supportive care provision for spouses, family members or friends of patients with brain tumour?
Partners, family members or friends of patients with a brain tumour frequently take on a new role as 'informal caregiver', or carer. This new role may be rewarding, but is also known to cause great burden and psychological distress. Often, these issues go unrecognized while affecting carers’ quality of life.
In this project we will develop a neuro-oncology specific needs questionnaire for carers. This may help facilitate the supportive care provision, which could lead to an improvement in quality of life.
The questionnaire will be brief and easy-to-use, and will contain questions on issues and needs frequently experienced by carers of brain tumor patients. Carers can indicate the severity of the need or issue, and for each need or issue it will be possible to indicate a wish for referral to supportive care specialists.
After the questionnaire has been drafted, we will ask carers of patients with brain tumor, who are currently under treatment at the Western General Hospital or who are in follow-up after treatment, to complete the questionnaire sent by mail. In addition, an evaluation form containing questions on the usability and perceived usefulness of the questionnaire will be included. We hope that approximately 85 carers will complete the questionnaire.
We hope that in the future, this questionnaire can be used to keep track of the supportive care needs of carers in neuro-oncology in clinical practice, which may facilitate the supportive care provision.
REC name
South East Scotland REC 01
REC reference
15/SS/0161
Date of REC Opinion
26 Oct 2015
REC opinion
Further Information Favourable Opinion