Dementia & cancer Care: experiencing & accessing cancer services
Research type
Research Study
Full title
Dementia & Cancer care: issues related to experiencing & accessing cancer services
IRAS ID
131992
Contact name
Gary Witham
Contact email
Sponsor organisation
Mamchester Metropolitan University
Research summary
Background
There is a much poorer survival rate after a cancer diagnosis for patients living with a pre-existing diagnosis of dementia (Raji et al 2008) with a dementia diagnosis associated with increased odds of being diagnosed at an unknown stage of cancer and highlights the often late diagnosis of cancer within this group. There is also evidence of delayed diagnosis (Boustani et al 2005) which may reflect attitudinal factors related to perceptions of limited effective treatment options as well as avoiding the perceived stigma attached to people with a diagnosis of dementia.
Aim
This study takes a qualitative approach and seeks to further explore the experiences of health care in relation to cancer services of people living with dementia and their carers’/supporters.
Method
People living with dementia and carer interviews will be undertaken in order to examine the experience related to accessing and receiving cancer services. This will be complemented by asking participants to use easy-to-use technologies such as digital cameras, keep a diary/ photo diary or audio recording(s) for one week after the interview in order to capture any experiences that participants may have on reflection of the interview. This would also promote a more participatory approach to working with informants. I will recruit participants through a regional oncology centre.
Data analysis
Data analysis will involve using an eclectic narrative approach based on the story itself as its object of inquiry (Reismann;1993).
Dissemination
Where possible participants will be sent copies of initial findings and their comments taken into account before findings are finalised. All those who participate will be offered a copy of the final report. I will also facilitate the embedding of the outcomes of this project into practice via collaboration with Manchester Mental Health and Social Care Trust, the Alzheimer’s Society and local oncology services.Summary of results
The findings demonstrate how informal carers navigate a path through complex cancer treatments and support their relative. A cancer diagnosis often requires multiple treatment visits to an oncology centre and this can be challenging for carers. They find that they need to co-ordinate and manage both health professionals and their care recipient(s) in terms of getting access to appropriate services and support. This process can be particularly challenging in the presence of a cognitive impairment that often demands effective communication with different agencies. Carers frequently experienced multiple challenges include dealing with the stigma and discrimination that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context. Issues of decision-making, best interests and quality of life were also of central concern for carers. Carers within this particular context face complex challenges that are not necessarily obvious and appear under reported. Their role is often rendered invisible by the nature of the care recipients’ condition. We suggest health professionals need to respond to and support carers in different ways that do not stigmatise and hence discriminate against them.REC name
North West - Greater Manchester South Research Ethics Committee
REC reference
13/NW/0717
Date of REC Opinion
7 Jan 2014
REC opinion
Further Information Favourable Opinion