Improving Quality of Care for People with Dementia and Cancer
Research type
Research Study
Full title
Investigating Quality of Care for People with Dementia Undergoing Cancer Treatment in Ambulatory Care (IMPACT)
IRAS ID
252061
Contact name
Naomi Farrington
Contact email
Sponsor organisation
University Hospitals Southampton NHSFT, R&D Department
Duration of Study in the UK
1 years, 1 months, 1 days
Research summary
Research Summary
This study aims to understand how high quality care can be provided for people with dementia undergoing outpatient cancer treatment (radiotherapy, chemotherapy or other anti-cancer treatment). The study uses ethnography, where a researcher conducts fieldwork to better understand a group of people.
Fieldwork will take place over 12 months in the outpatient departments of University Hospital Southampton NHS Foundation Trust. It will include observations, interviews and review of patient notes. The people who will be invited to take part are:
- People with dementia having cancer treatment;
- Friends or family supporting people with dementia having cancer treatment;
- Staff involved in the care of people with dementia having cancer treatment.
All those who take part in the study will be asked to give consent. The study includes:
- Observation. Up to 30 hours of observation will take place in the general clinic areas as well as during doctor appointments and when treatment is being given. The researcher will take detailed notes.
- Interviews. Up to 50 interviews will be carried out with patients, carers and staff. Interviews will be digitally recorded.
- Patient notes. Researchers will look at patient notes to add to information from observation and interviews. They will look at the notes to find out about diagnosis, treatment and support offered to patients.
These methods will help the researchers form a picture of the outpatient setting including how people act (behaviour), the surroundings and conditions (environment), and the way treatment and support is organised (processes). This will show how healthcare organisations might best provide cancer treatment for people with dementia that is person-centred (focused on the needs of the person) and of a high quality.Summary of Results
This study was carried out to look at the experiences of people with dementia who have treatment for cancer as outpatients, as well as their family members, and the staff looking after them. We wanted to know what the problems might be, and how we might be able to make cancer treatment easier for people with dementia. Between January 2019 and July 2021, we spent time in the outpatient cancer departments of two large hospitals in the south of England. We spoke to people with dementia having treatment for cancer, their family members, and the staff working in these departments. We asked them to tell us about their experiences. We also spent time watching how treatments and clinics were carried out. Lastly, we looked at patients’ medical records. We put all this information together, and found three main things:
1. People in our study were worried about people with dementia being safe and well during treatment, but they thought that they should be treated fairly and offered the chance to have treatment (like people without dementia).
2. People in our study told us that having cancer treatment was sometimes difficult, for example they had to wait a long time in hospital to have their treatment. People in our study told us that people with dementia were individuals with different needs, and they often did not fit in with how services were designed.
3. People in our study told us about some things that made cancer treatment harder (like seeing different doctors all the time). They also told us about things that made it easier (like having a clinical nurse specialist to help them).
We found that cancer outpatient services need to make changes so they are more ‘responsive’ to the needs of patients and their families. This means that they take into account the needs of these patients as individuals. Services can do this in lots of different ways. For example, the people in the treatment departments could speak to people with dementia and their families before they come in, to see if there is anything that might help them with treatment. Making changes like this could help make outpatient cancer services more dementia friendly.REC name
South Central - Berkshire Research Ethics Committee
REC reference
18/SC/0590
Date of REC Opinion
23 Nov 2018
REC opinion
Favourable Opinion