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. Copyright © 2000 John Wiley & Sons, Ltd.

Survivorship considerations in adults with hereditary breast and ovarian cancer syndrome: state of the science

“…Ten qualitative studies were identified and explored family discord [13], experience, physical, and psycho-social well being of women with breast cancer under the age of 40 who are BRCA1/2 mutation carriers [14], stigma associated with genetic disease [15], moral and social effects of having genetic testing [16], long term coping strategies and unmet needs of women at increased risk for breast cancer [17], experiences of women having prophylactic mastectomy [18,19], responses to BRCA1/2 testing [20][21][22] and how women live with increased risk [23] (See Table 1). Twenty seven quantitative studies were identified (See Table 2).…”

The development of a psychoeducational intervention for women living with an increased risk of breast cancer

“…The draft information pack was piloted on a small group of women living with an increased risk of breast cancer who had participated in a previous study [2]. Twelve of the 25 women who were invited to evaluate the information pack replied to the invitation.…”

“…A telephone focus group study of 25 women who had been attending the South East Scotland familial breast cancer clinic for at least 2 years highlighted unmet needs both for information and psychosocial support [2]. A subsequent larger-scale study of 249 long-term attendees of the clinic identified that a need for up-to-date scientific and psychosocial information was widespread [3].…”

“…Long-term attendees of a familial breast cancer clinic are likely to vary in their ability to cope with these uncertainties [2]. If additional uncertainties about scientific advances in this area could be clarified or resolved their emotional burden would perhaps be reduced.…”

“…However, a subset of these women may experience chronic distress, which adversely affects them in their everyday lives [2]. A recent review of self-help treatments has shown that written information can be beneficial for primary care patients suffering from anxiety or depressive disorders [17].…”