Principal Investigator: Dr Naomi Farrington

Team members: Dr Naomi Farrington (Advanced Nurse Practitioner and NIHR Clinical Lecturer, University Hospital Southampton and University of Southampton), Professor Jackie Bridges (Professor of Older People’s Care, School of Health Sciences, University of Southampton), Professor Alison Richardson (Clinical Professor of Cancer Nursing and End of Life Care, University of Southampton and University Hospital Southampton).

Start: 01 January 2019

End: 31 May 2022

Project partners: University Hospital Southampton NHS Foundation Trust, University of Southampton. Study is funded as part of a HEE/NIHR Clinical Lectureship

Lay summary:

There is not much information about people with dementia having cancer treatment. 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 a research method called ethnography, which is where a researcher conducts ‘fieldwork’ to study a group of people to better understand that group. It will look at:

• The environment (surroundings and conditions) of the outpatient clinics and treatment areas;

• How people in the outpatient clinics and treatment areas behave and interact with each other;

• How treatment and support is organized in the outpatient clinic and treatment areas.

Fieldwork will take place 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 in the study 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 (doctors, nurses, support workers, administrative staff, and others).

All those who take part in the study will be asked to give consent. The study includes:

• Observation. this will be carried out in cancer outpatient clinics and treatment areas. This will look at the environment (surroundings and conditions); the everyday interactions that happen between patients, carers and staff; and way in which care and support take place. 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. these will be carried out with patients, carers and staff. These will focus on how people in the study speak and act to understand more about how they think and feel. Interviews will be digitally recorded, and a written transcript will be made.

• Patient notes. Researchers will look at patient notes to add to the information from observation and interviews. They will look at the notes to find out about diagnosis, treatment and support offered to patients.

  
  

These 3 methods of data collection will help the researchers put together a detailed 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 reveal ways in which healthcare organisations might best provide cancer treatment for people with dementia that is person-centred (focused on the needs of the person themselves) and of a high quality.

What did we learn?

• The cultural environment of the outpatient care setting reflects and supports the standardized processing of people for cancer treatment.

• Dementia introduces a wider set of care requirements not catered for by a standardized treatment model.

• The needs of patients with dementia could be addressed most effectively when individualized care, was offered.

This was possible when services were responsive to patient need.

What difference did this new knowledge make?

Outpatient cancer services can ensure responsiveness by:

• having an established way of eliciting needs, preferences and expectations

• a belief that a person's needs and expectations are legitimate, and that effort should be made to address them

• ability to accommodate these needs and expectations.

Why is this important for patients, health and care providers, and policy makers?

Managers of outpatient cancer care services have a better understanding of how to design and organize settings so that the needs of people with dementia can be addressed.

Patients with dementia and their families will be more likely to receive personalized care that meets their needs.

Policy makers will be more aware of the need to incorporate principles of personalized care into policies guiding the care and treatment of people with multiple health conditions.

What have we done?

This work has been part of building momentum to increase the profile of how people with cancer and dementia receive care and treatment.

A national symposium was carried out with clinicians and academics in 2022 showcasing work addressing cancer and dementia.

Dr Naomi Farrington is presenting this work as part of a session on ‘Person-Centred Care’ at the European Oncology Nursing Society in Madrid, October 2023.

3 papers have been published on this study:

Understanding the cultural environment of the outpatient care setting for patients with dementia receiving cancer treatment: a qualitative study. https://pubmed.ncbi.nlm.nih.gov/36382351/

How can I improve cancer services for people with dementia? https://journals.rcni.com/cancer-nursing-practice/evidence-and-practice/how-can-i-improve-cancer-services-for-people-with-dementia-cnp.21.5.22.s10/full

'A real fine balancing act’: A secondary qualitative analysis of power imbalance in comorbid cancer and dementia in an outpatient treatment setting. https://pubmed.ncbi.nlm.nih.gov/36929372/

CLEAR steps for a responsive outpatient cancer service

•Clarify needs, expectations, preferences and goals

•Legitimise these as valid

•Enable these to be met by implementing strategies

•Audit to ensure this is working for patients caregivers and health service

•Record for the future

https://vimeo.com/688041079