Dementia Care and Prevention

Little information exists concerning the implications of comorbid cancer-dementia for people having cancer treatment, particularly in an ambulatory care setting. However, it is known that people with dementia have poorer cancer outcomes than those without dementia. Research to understand the delivery and experience of cancer treatment in ambulatory care is needed before interventions can be developed to ensure high quality care is provided for this patient group. The purpose of this focused ethnographic study is to characterise the environment, behaviour and processes that comprise the ambulatory care setting, and to explore what constitutes ‘good care’ for people with dementia undergoing cancer treatment (radiotherapy, chemotherapy or other SACT) in this context. The study will focus on understanding: (1) the physical fabric of the care setting; (2) the interaction, behaviours and perceptions of those within the care setting; (3) the organizational, clinical and interactional processes involved in care delivery.

Fieldwork will take place over a period of 12 months in the chemotherapy, radiotherapy and outpatient departments that comprise the ambulatory care service of University Hospital Southampton NHS Foundation Trust’s cancer centre. Data collection will involve observations, interviews and document analysis, and will invite participation from people with dementia having cancer treatment, informal carers of people with dementia having cancer treatment, and staff members involved in the care and management of people with dementia having cancer treatment (oncologists, nurses, radiographers, and other members of the healthcare team including support workers, administrative staff, and allied health professionals). Explicit consent will be sought from all participants who agree to contribute beyond an initial informal interaction.

Observation (up to 30 days) in ambulatory care will focus on factors including the influence of the physical environment; the everyday interactions that take place between patients, carers and staff; and the care processes and pathways that are evident. Observation will be both general and focused, taking place in the communal clinic areas and during consultations and treatment administration. Extensive field notes will be taken.

Interviews (up to 50 interviews) will be conducted with patients, carers and staff to explore the cultural context of the ambulatory care setting, including shared language, patterns of behaviour, interactions, attitudes and beliefs. These will be digitally recorded and transcribed.

Document analysis of patient case notes will be carried out in order to augment data collected from observation and interviews. Particular attention will be paid to the frequency and character of interactions with health and social care professionals, and information about diagnosis, treatment and support offered.

This triad will allow formation of a rich picture of the cultural context in which the behaviour, environment and processes under investigation are situated, allowing this to become meaningful to the researcher. Interpretation of the resulting cultural portrait will be used to identify ways in which the organisation of care might be structured to enable ambulatory care to provide a person-centred service for people with dementia having cancer treatment and therefore improve overall quality of care.