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Research project: Developing a breast cancer survivors’ resource pack - Dormant - Dormant

Currently Active: 
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Research conducted through focus groups and expert interviews to inform the development of a resource pack for people as they come to the end of active breast cancer treatment.

The need to improve the provision of information for patients and others affected by cancer has been highlighted in the Cancer Reform Strategy as an area for improvement in national cancer services (Department of Health, 2007). More recently the joint Cancer Survivorship policy initiative between the Department of Health and Macmillan Cancer Support has highlighted the large unmet information and support needs of cancer patients who are living with cancer and the lack of information and support services for cancer survivors (REF). Currently there are approximately 500,000 people living with breast cancer in the UK. Although breast cancer patients have a range of information resources available to them at the point of diagnosis and during treatment, there is currently a gap in information and support once treatment has finished. Yet, it is at this time as people try to regain a sense of normality, think about going back to work and/or cope with the side effects of treatment, that support is often most needed (REF). Patients who have come to the end of their regular follow-up appointments with their breast care nurse have also reported feeling abandoned and isolated.

In July 2008, Breast Cancer Care commissioned some market research to examine its services portfolio and identify any gaps in service provision for breast cancer patients. A key recommendation from patients was the need for a 'life after treatment' resource which could be disseminated to all patients after completing treatment.

Aim 1: To make recommendations on the content and format of a new resource pack for breast cancer survivors post-treatment by the UK charity Breast Cancer Care through: reviewing the research literature on information needs of women post-treatment; establishing the views of expert health care professionals; and exploring with breast cancer patients, who have completed active hospital based treatment in the past 12 months, what information they require regarding managing and living with breast cancer.

Aim 2: To pilot test Breast Cancer Care's prototype resource pack with a diverse sample of breast cancer patients who are within 3 months - 3 years post active hospital based treatment and also with a range of different health care professionals involved in hospital after care for breast cancer patients, and make recommendations for how the resource pack could be improved.

Project team

Dr Deborah Fenlon, Senior Research Fellow; Liz Reed, Breast Cancer Care, Karen Scanlon, Breast Cancer Care, Dr Ann Dewey, Portsmouth University.

Project funder

Breast Cancer Care

Associated research themes

Breast Cancer
Survivorship
Self management resource
Follow up care

Related research groups

Complex Healthcare Processes
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