Young childless women with breast cancer in the UK: a qualitative study of their fertility-related experiences, options, and the information given by health professionals

ObjectiveInternationally recognised specialist breast cancer scientists, clinicians and healthcare professionals have published breast cancer research gaps that are informing research funding priorities in the UK and worldwide. We aimed to determine the breast cancer research priorities of the public to compare with those identified by clinicians and scientists.DesignWe conducted a qualitative study and thematic analysis using ‘listening events’ where patients with breast cancer and public representatives used a patient’s breast cancer journey to identify research themes.Participants and settingFemale participants were recruited from attendees at participating hospitals and support groups in the northwest of England, including patients, their family and friends as well as staff at a local retail centre.InterventionA framework approach was used to analyse transcribed discussions until thematic saturation was reached.Main outcome measuresBreast cancer research priorities were identified from participant discussions and compared with the published gaps identified by scientists and healthcare professionals.ResultsThematic saturation was reached after 27 female participants participated in listening events. Our participants consistently focused on improved methods of dissemination of information and improving education on the signs and symptoms of breast cancer. This was not highlighted by scientists or healthcare professionals. There was strong emphasis on quality of life-related issues such as side effects of treatment. There was some agreement between the priorities deduced by our study and those of the professionals in the areas of screening, prevention and breast reconstruction.ConclusionOur study identified some research themes that were not identified by scientists and healthcare professionals in two earlier landmark studies. This highlights the importance of including patients and public representatives when setting research priorities. The results should be used to guide investigators when planning future studies and for funding bodies in allocating resources for future projects.

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Exploring the requirements for a decision aid on familial breast cancer in the UK context: a qualitative study with patients referred to a cancer genetics service

Journal of Evaluation in Clinical Practice ◽

10.1111/j.1365-2753.2007.00811.x ◽

2008 ◽

Vol 14 (1) ◽

pp. 110-115 ◽

Cited By ~ 8

Author(s):

Rachel Iredale ◽

Frances Rapport ◽

Stephanie Sivell ◽

Wendy Jones ◽

Adrian Edwards ◽

...

Keyword(s):

Breast Cancer ◽

Qualitative Study ◽

Familial Breast Cancer ◽

Decision Aid ◽

Cancer Genetics ◽

The Uk

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Women's responses to information about overdiagnosis in the UK breast cancer screening programme: a qualitative study: Table 1

BMJ Open ◽

10.1136/bmjopen-2013-002703 ◽

2013 ◽

Vol 3 (4) ◽

pp. e002703 ◽

Cited By ~ 49

Author(s):

Jo Waller ◽

Elaine Douglas ◽

Katriina L Whitaker ◽

Jane Wardle

Keyword(s):

Breast Cancer ◽

Cancer Screening ◽

Qualitative Study ◽

Breast Cancer Screening ◽

Screening Programme ◽

Breast Cancer Screening Programme ◽

Cancer Screening Programme ◽

The Uk

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The experience of the partners of women with breast cancer

Revista da Escola de Enfermagem da USP ◽

10.1590/s1980-220x2017025203366 ◽

2018 ◽

Vol 52 (0) ◽

Cited By ~ 1

Author(s):

Leonardo Toshiaki Borges Yoshimochi ◽

Manoel Antônio dos Santos ◽

Edilaine Assunção Caetano de Loyola ◽

Paola Alexandria Pinto de Magalhães ◽

Marislei Sanches Panobianco

Keyword(s):

Breast Cancer ◽

Qualitative Study ◽

Emotional Distress ◽

Health Professionals ◽

Treatment Process ◽

Methodological Framework ◽

Phenomenological Psychology ◽

Emotional Suffering

ABSTRACT Objective: To understand the experience of partners of women with breast cancer. Method: This was a qualitative study, based on the theoretical-methodological framework of existential and phenomenological psychology, and carried out with the partners of women with breast cancer who attended a center for rehabilitation after mastectomy. The data were collected in interviews between June and November 2014, based on a guiding question. Results: Ten partners participated in the study. On discovering the disease, the partners experienced emotional distress caused by the fear of losing their partners. Before this suffering, they demonstrated the ability to react: willingness to provide care, to comfort and to support the women in search of treatment, and together, seek to reverse adverse situations. They also showed sensitivity and recognized the intense emotional suffering of the women caused by the challenges faced throughout the course of treatment. Conclusion: The present study showed the intense suffering of the partners of women with breast cancer and their difficulty to ask for help. Thus, health professionals must be alert, addressing their needs throughout the treatment process to mitigate suffering.

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