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Living with Rectal Cancer: A Study Exploring the
Experiences of Individuals Living with Inoperable Rectal
Cancer and their Carers
Jane Winter, University of Southampton
Email: [email protected]
Summary
This study was funded by the Macmillan Research Fellowship scheme. The purpose of the
study was to examine the support needs of people living with advanced colorectal cancer
and their carers and to identify ways of addressing those needs.
Background
Advances in treatment and prolonged survival times mean that increasingly individuals are
living with advanced cancer, yet services remain disease-orientated. This study documented
the process of undertaking a longitudinal qualitative study to explore the ‘everydayness’ of
living with locally advanced rectal cancer. It identified how this can influence individuals’ dayto-day lives when the focus of care moves away from cure, but prior to the transition to end
of life care. The aim was to obtain data in which to situate local service development based
on those aspects which were accorded primacy by the participants. The specific aims of this
study were:
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To explore the care needs of local patients with colorectal cancer and their carers
To develop a framework for service provision which addresses those needs
To test if the new changes result in improvements in meeting the care and support needs
of local patients and their carers
This interpretive study used a longitudinal qualitative approach which was informed by
phenomenology. The work involved ten participants with locally advanced rectal cancer.
Successive interviews with ten individuals were undertaken over a two-year period. During
the first phase of the research, interviews were conducted with patients at a local PCT.
Patients’ experiences of their illness and service provision were explored and their needs in
terms of care and support identified. During the second phase, a focus group was
conducted among healthcare professionals involved in service delivery to clarify their needs
in caring for this group of patients and carers. Means of increasing collaboration among
professionals and improving services to patients and carers were identified and a framework
was developed. During the final phase of the research, the implementation of the new
changes and framework was tested in terms of improvements in service provision to patients
and their carers.
Key Findings
Individuals during much of this time concentrated on maintaining normality in their everyday
lives. The drive for stasis and focus on day-to-day living allowed the individual to remain in
the present and distance a future which was associated with illness and annihilation. Crucial
to this was the ability to self-manage. This allowed space to create a self-definition of health.
Uncertainty during this time was life-affirming. Avoiding those who may challenge this was
desirable for as long as possible. As illness progressed there was an inverse relationship
between the ‘boundness’ of the body and the ‘boundness’ of the individual.
Why is this work important?
In the UK there are over 30,000 new cases of colorectal cancer each year. Colorectal
cancer accounts for about 12% of cancer deaths each year and has an overall five-year
survival rate of less than 40%. With colorectal cancer, the disease often progresses over a
period of months or years without necessarily presenting extensive or complex symptoms.
As a result many patients do not require the input of specialist palliative care services but
rather attend regular hospital out-patients appointments and are cared for within their own
homes by District Nurses and GPs.
The need to identify and support service models which will result in high-quality care and
services for all people with cancer and their carers has been highlighted by the Department
of Health for a number of years. In reality, however, people living with cancer and their
carers still experience difficulties accessing support and services. Criticisms made in this
context include the need for improved organisation and integration of care and for more
effective assessment of individual needs which encompass all elements of care (physical,
emotional, social etc).
Insights from this study raise the need for further research and exploration of alternative
models of supportive care whilst focusing on the wellness of individuals and selfmanagement within their daily lives.