Although there is a real need for support and information, many women struggle and get lost in the deluge of information. In a study of 227 women, researchers at the Sahlgrenska Academy at the University of Gothenburg, Sweden, have developed a web-based programme to guide patients all the way from diagnosis to rehabilitation.
Last year 6,800 Swedish women were diagnosed with breast cancer. Diagnosis is followed by an operation to remove part or all of the breast, radiotherapy and/or chemotherapy, and then anti-hormonal treatment for up to ten years after the operation – all of which involves being shunted around between outpatient clinics and various hospital wards.
Need for information
Several scientific studies have shown that women with breast cancer have a real need for communication and information about their disease – such as how they can help themselves – as well as psychological and emotional support. This being the case, researchers at the University of Gothenburg’s Sahlgrenska Academy have worked with patients and care staff to develop an Internet-based programme that supports breast cancer patients from diagnosis right through to rehabilitation.
Design based on interviews
Designed after interviews with women with breast cancer, the programme includes input from various experts (doctors, nurses, social workers, physiotherapists, patient representatives), links to websites, book recommendations and glossaries of medical terms.
Increase the involvement
“We tackle the questions that crop up before and after the operation, and try to give psychosocial support and provide information on rehabilitation,” says researcher Ingalill Koinberg who is leading the study at the Sahlgrenska Academy. “The aim is to see whether Internet-based support can help ease breast cancer patients’ anxiety and worries, increase their involvement in their care and help them to help themselves.”
Complement to health care
The programme is being assessed scientifically in a study of 227 women who had surgery for breast cancer at Sahlgrenska University Hospital and Lund University Hospital between 2008 and 2011.
“The Internet support is to be viewed as complementary to standard health care and aims to allow patients to get hold of sorted, packaged and quality-assured information at any time of the day or night,” says Koinberg. “As the project has only recently got under way we can’t say that much about the results, but we believe that knowledge, support and information can only ever help.”
The web-based programme will be available through the Swedish Breast Cancer Association’s website: http://www.bro.org.seFor further information, please contact: Ingalill Koinberg, senior lecturer, Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg
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