Experience of caring for a person with brain cancer at the end of life
Research type
Research Study
Full title
Understanding the work of treatment whilst caring for a person with brain cancer at the end of life
IRAS ID
195906
Contact name
Lindsay O'Connor
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
1 years, 5 months, 31 days
Research summary
In response to healthcare treatment, individuals and their informal caregivers are frequently required to carry out specific tasks, or work; and we know that for some with chronic conditions, when the ability to perform this work is reduced it can have a negative impact on function and well-being. This is likely to also be important in the context of brain cancer; where treatment involves complex healthcare regimes over a potentially rapidly life limiting course, with individuals almost certainly requiring the help of an informal caregiver to perform basic daily tasks.
The purpose of this study is to identify, describe and explain the work people with brain cancer and their informal caregivers have to take on in response to treatment for the disease, particularly in the final months of life. The study will use qualitative methods to gain an account of this work, conducting one to one semi-structured interviews with two groups: bereaved informal caregivers, identified and recruited by the clinicians previously involved in the patient’s care; and health and social care professionals working in neuro-oncology, recruited through the specialist centres where they work. Interview transcripts and field notes will be analysed using a method of constant comparison.
The findings of the study aim to inform health and social care professionals in neuro-oncology how best to support their patients and their informal caregivers, and will aid future work into the development of a measure of the work of treatment in brain cancer. From what is already known identifying those who may need extra support to manage the work of treatment could be relevant in order to achieve the best outcome in terms of function and well-being for both the patient and their informal caregiver. The study is being undertaken as a doctoral project for the degree of PhD Health Sciences.
REC name
South Central - Hampshire B Research Ethics Committee
REC reference
16/SC/0185
Date of REC Opinion
31 May 2016
REC opinion
Further Information Favourable Opinion