Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups

Abstract

Research to date has mainly focused on the short-term psychological impact of genetic risk counselling for breast cancer. This study aimed to explore the long-term consequences for women of being informed about an increased risk of breast cancer in terms of: the effect on their everyday lives, their coping strategies and their unmet needs in terms of the current service. The participants were 25 women with a family history of breast cancer who had received genetic risk counselling and had consequently been receiving clinical surveillance for at least 2 years. They took part in one of seven telephone focus groups and subsequently completed a feedback questionnaire. Transcripts of the focus groups were qualitatively analysed by three independent researchers with inter-rater agreement between pairs of raters ranging from Kappa = 0.61-0.79. Six key issues emerged from the data, which provide an important insight into the long-term consequences of living with an increased risk of breast cancer concerning: (1) psychological adaptation, (2) behavioural adaptation, (3) family issues, (4) clinical surveillance, (5) provision of information, and (6) peer support. These findings, together with the quantitative results of the feedback questionnaire, have clinical implications that require further investigation in larger scale quantitative research.