Knowledge and Expectations of Women Undergoing Cancer Genetic Risk Assessment: A Qualitative Analysis of Free‐Text Questionnaire Comments

Abstract

Individuals undergoing cancer genetic risk assessment have been found to have a poor understanding of the process, which may affect how well they cope with learning their risk. This paper reports free-text data from questionnaires completed by women undergoing a randomised controlled trial of a psychological intervention. Of the 268 women undergoing genetic assessment for familial breast/ovarian cancer risk who were invited to take part in the trial, 157 women returned research questionnaires. Of these, 97 women provided free-text comments upon referral to a cancer genetics clinic, 62 provided comments whilst waiting for risk information (average, moderate or high), and 36 women provided comments following notification of risk. This paper reports a thematic analysis of the free-text data. Themes reflected individuals' poor knowledge and uncertainty about genetic risk assessment. How well individuals responded to learning their risk depended upon whether expectations had been met. Regardless of risk, individuals undergoing cancer genetic risk assessment are likely to benefit from increased information about its process and timescales, and access to increased psychological support. Free-text comments can provide valuable data about individuals' expectations and knowledge of genetics services.

The Effect of BRCA Gene Testing on Family Relationships: A Thematic Analysis of Qualitative Interviews

“…This has been seen several times before in BRCA families (Phelps et al, 2007;Speice et al, 2002) and in families with HD or FAP (Sobel and Cowan, 2000;Sobel and Cowan., 2003;Duncan et al, 2008). Specifically, the current study highlights that individuals who are the only ones in their family to test positive may be especially at risk of feeling isolated since their family may not be able to empathize and provide the support needed.…”

“…As outlined in the Background and Significance section, previous studies have shown that individuals often decide to undergo BRCA testing to provide information for their family, some even feeling that their family has a right to know this information (Hallowell, 1999;Tercyak et al, 2007;Phelps et al, 2007;Foster et al, 2004;Daly et al, 2001;Goelen et al, 1999;Foster et al, 2002;Hallowell et al, 2003;Green et al, 1997). Thus, it was not surprising that index cases in the current study tended to feel an obligation or responsibility to inform their relatives of their BRCA mutation.…”

“…Taking the lead from Gilligan (1982) who studied psychological theory of women, Hallowell (1999) suggests that individuals (especially women) considering testing think about implications for their family because they are thinking of themselves as 'selves-in-relation', defining themselves in terms of their relationships with and obligations to their family. The research that characterizes this idea is presented here.Many research participants stated that getting information for family members was an important reason to have BRCA testing (Hallowell, 1999;Tercyak et al, 2007;Phelps et al, 2007;Foster et al, 2004;Daly et al, 2001;Goelen et al, 1999;Foster et al, 2002;Hallowell et al, 2003). Some went a step further and insisted that it was their duty, obligation or responsibility to pursue testing (Hallowell et al, 2003;Hallowell, 1999;Kenen et al, 2003a) because they perceived that their family members had a right to know their own risk for cancer (Hallowell, 1999;Daly et al, 2001).…”

“…Qualitative research is often about exploring meaning; it attempts to understand both what people do and why they do it (Beeson, 1997). Qualitative work may also place importance on all observations no matter how deviant from the 'norm' they are.Thus, qualitative work can be very useful for health care professionals to sensitize themselves to the experience of the individuals or families they are meeting with.Several qualitative studies have been performed to describe the perception of risk and the experiences people have as part of a family with a strong history of breast/ovarian cancer, as outlined above (Kenen et al, 2003a;Phelps et al, 2007;Raveis and Pretter, 2005; Werner-Lin, 26 2007;Hallowell, 1999;Foster et al, 2002). Others have focused more on the testing decisions and on family communication of genetic information including disclosures of BRCA test results (Green et al, 1997;Hallowell et al, 2003; d'Agincourt-Canning, 2006; d'Agincourt-Canning, 2001;Forrest et al, 2003;Foster et al, 2002;Goelen et al, 1999;Hallowell et al, 2005a;Hallowell et al, 2005b;Hamilton et al, 2005;Kenen et al, 2004 …”

Descriptive and numeric estimation of risk for psychotic disorders among affected individuals and relatives: Implications for clinical practice

“…The clinician who wishes to help their patient grapple with these issues at a deeper level could consider a risk communication strategy that incorporates exploring: 1) their patient's existing estimates of numeric probability for a child to develop a psychotic illness, as well as 2) how their patient would describe the risk, 3) the factors that have contributed to this perception (for example, the presence of multiple additional affected family members), and 4) their patient's perceptions of illness severity, before attempting to provide any new information (Skirton and Eiser, 2003). Further, after the delivery of information about chances for children to be affected, the clinician could encourage the patient to reflect on the information in light of their previous perceptions, and its effect on their perceptions, such that unanticipated reactions can be addressed (Phelps et al, 2007).…”