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Living beyond cancer: using people's experiences to develop a resource as

Funder: UK Research and InnovationProject code: ES/J010472/1
Funded under: ESRC Funder Contribution: 84,965 GBP

Living beyond cancer: using people's experiences to develop a resource as

Description

Seen as an almost fatal disease half a century ago, cancer has become a treatable disease for many, with a growing proportion of cancer patients living for more than five years after a diagnosis. Recent estimates suggest that there are now 2 million people living past a diagnosis of cancer in UK and over half of these have had breast, colorectal or prostate cancer. As the five-year survival rates for all cancers combined has reached 50%, the long-term effects of cancer and its treatments, both physical and psychological, are becoming more relevant. While many people surviving at least 5 years from diagnosis report few or no problems, 20-30% report physical problems, poorer quality of life, psychological distress, sexual problems, problems with social relationships and financial concerns. Although there is an enormous range of resources available to people with cancer, most are aimed at supporting people through the diagnosis and active treatment phases. There has been relatively little research, and few resources, to help survivors to deal with life beyond the active treatment phase. Our research with cancer survivors demonstrates the need for internet resources to support the growing number of people living with cancer long-term. The proposed project will follow on from a Cancer Research UK funded study about the use of primary care services and unmet needs of long-term cancer survivors. As part of that research, 40 people who had survived at least 5 years from diagnosis of breast, colorectal or prostate cancer were interviewed about what it is like to live beyond cancer. The interview study was conducted using qualitative methods developed by a group of social scientists in the Health experiences research group Oxford that have been developed and refined over 10 years and based on rigorous social science research methodology. These data will be combined with interview recordings from long-term survivors of other types of cancer who participated in previous HTO studies, and re-analysed for the purpose of writing 20-25 summaries for HTO on the issues that are most important to cancer survivors. The topic summaries will be illustrated with clips from the interviews in video, audio or text format. The topic summaries will be drafted by the researcher, checked by another researcher who will familiarise themselves with all the data, and by an appropriately qualified member of an expert advisory panel. The panel will include cancer survivors, social scientists and health and social care professionals. The researcher will identify, in consultation with the advisory panel, a list of respected national and local organisations and websites that provide other kinds of information and support, for inclusion on the site. Before our project partners, DIPEx, publish the material on the HTO website we offer a couple of pilot focus groups to ensure that the new site reflects the experiences of cancer survivors and that we have correctly identified the issues that are important to a broader range of cancer survivors than those included in the original interview sample. Audio tape recorded focus group interviews would be conducted with long-term cancer survivors and used to identify unmet information and support needs. Participants would then be invited to explore the 'draft' website and complete a brief questionnaire which would cover whether the site addressed their unmet needs, whether the issues that they think are important were covered, whether perspectives akin to their own had been covered in the topic summaries, if they had learnt anything new and whether they would recommend the site to others. The new section of HTO on living beyond cancer will be intended primarily as a resource for other people who are living beyond cancer, their family and friends, and will also be used to educate health and social care professionals.

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