The BRCA Self‐Concept Scale: a new instrument to measure self‐concept in BRCA1/2 mutation carriers

Esplen, Mary Jane; Stuckless, Noreen; Hunter, Jonathan; Liede, Alexander; Metcalfe, Kelly; Glendon, Gordon; Narod, Steven A.; Butler, Kate; Scott, Jenna; Irwin, Ellen

doi:10.1002/pon.1498

Cited by 53 publications

(81 citation statements)

References 57 publications

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“…Mastery and stigma were measured with the respective subscales of the Toronto BRCA Self-Concept Scale [20] where subscales are described in detail.…”

Section: Methodsmentioning

confidence: 99%

“…A total of 241 women who carried a BRCA1 or BRCA2-mutation were recruited from 3 different sites in Canada to participate in a validation study of a self-concept scale for BRCA1/2-mutation carriers and participated in a mail-out survey [20]. Carriers affected with cancer were excluded if they had advanced disease.…”

Section: Participantsmentioning

confidence: 99%

“…Carriers affected with cancer were excluded if they had advanced disease. Details on study procedures have been described previously [20].…”

Section: Participantsmentioning

confidence: 99%

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Can self-esteem, mastery and perceived stigma predict long-term adjustment in women carrying a BRCA1/2-mutation? Evidence from a multi-center study

2010

Self Cite

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Little is known about protective and vulnerability factors of long-term adjustment with BRCA1/2 carrier status. Specifically, the role of personal resources and perceptions of stigmatization have not been studied in the context of adjustment with hereditary breast cancer. The present study, therefore, explored associations of personal resources and stigma with cancer-specific anxiety in female BRCA1/2-carriers within a cross-sectional multi-center study. Participants (n = 237) had received carrier notification between 4 months and 8 years before data collection and experienced a low level of cancer-related anxiety on average. Younger age was associated with both higher perceptions of stigma (P = .002) and cancer-specific anxiety (P = .034). Time since receiving test results, affected status, having undergone prophylactic mastectomy or prophylactic oophorectomy was not associated with demographic or psychological variables. Global self-esteem (P = .002) and mastery (P < .001) were associated with fewer intrusive and avoidant thoughts, whereas stigma was associated with more (P < .001). Time since test result receipt did not moderate relations of self-esteem, mastery or stigma and cancer-specific anxiety. Cancer-specific anxiety did not vary as a function of time since carrier notification. Hence cancer-specific distress may be explained by past and ongoing experiences of cancer in the family rather than by the time point of carrier notification. Psychological interventions may benefit from specifically addressing feelings of stigmatization, and promoting self-worth and personal control in order to affect cancer-specific anxiety.

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“…Mastery and stigma were measured with the respective subscales of the Toronto BRCA Self-Concept Scale [20] where subscales are described in detail.…”

Section: Methodsmentioning

confidence: 99%

Section: Participantsmentioning

confidence: 99%

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Can self-esteem, mastery and perceived stigma predict long-term adjustment in women carrying a BRCA1/2-mutation? Evidence from a multi-center study

2010

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“…Male participants in this study who filled out the online survey also completed the BRCA Self-Concept Scale (Esplen et al, 2009) to ascertain how the BRCA gene mutation made the participants feel about their self-identity. The overall Self-Concept Scale is composed of 17 items, each of which has a range of 0 (not at all) to 10 (completely) and measures the extent to which participants endorse with the corresponding statement.…”

Section: Self-concept and Brca Genetic Testingmentioning

confidence: 99%

Within-Gender Differences in Medical Decision Making Among Male Carriers of the BRCA Genetic Mutation for Hereditary Breast Cancer

Hesse‐Biber

Chen

2015

Am J Mens Health

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An intersectional approach was used to understand sex/gender differences in men's health decisions with regard to hereditary breast cancer (BRCA). A sequential explanatory mixed method design was employed consisting of an online survey with a convenience sample of 101 men who tested positive for the breast cancer mutation following up with an in-depth interview with a subsample of 26 males who participated in the survey. The survey results revealed that 70.3% (n = 45) considered "Family Risk" as the primary reason for getting BRCA tested; 21.9% (n = 14) considered "Medical Considerations," and 7.8% (n = 5) considered "Social Support" as their primary reason. Male participants who were 50 years old or younger or who did not have children were more likely to consider medical reasons as the primary reason to get tested. In terms of self-concept, younger men were more stigmatized than their older counterparts; married men felt a greater loss of control with regard to their BRCA-positive mutation diagnosis than single men; and professional men as a whole felt more vulnerable to the negative influences of the disease than those who had already retired. Regression analysis results indicated that negative self-concept was strongly related to sampled males' BRCA involvement 6 months after testing. Applying an intersectional approach to health care, decision-making outcomes among BRCA-positive mutation males provides an important lens for ascertaining the within-sex/gender demographic and psychosocial factors that affect the diversity of men's pretesting and posttesting medical decisions.

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“…Disclosure of an increased risk of cancer may not only influence psychological functioning, but may also evoke feelings of being different, alluded to as in such self expressions as ''abnormal, mutated and altered'', used by mutation carriers [17,18]. Global measures, such as those to assess depressive symptomatologi used in most studies of psychological function may fail to capture the specific psychological issues linked with being at high risk of cancer and the long-term perspectives of living with an increased risk of colorectal cancer is at present largely unknown [16,[19][20][21][22].…”

Section: Introductionmentioning

confidence: 99%

Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study

Petersen¹,

Esplen

Ladelund

et al. 2011

Familial Cancer

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An increasing number of individuals seek genetic counseling and hereby learn about hereditary cancer in the family. Lynch syndrome is associated with an inherited high risk for colorectal and gynecological cancer, but knowledge about how family members at risk perceive their situation is limited. We used the national Danish HNPCC register to collect data on self-concept from 413 individuals with Lynch syndrome. The recently developed Lynch syndrome self-concept scale contains 20 items within two subscales related to stigma-vulnerability and bowel symptom-related anxiety. Significantly higher total scores, indicating a greater impact on self-concept, were reported by females and by individuals with experience from cancer in close relatives, whereas individuals with less formal education scored significantly higher on the stigma and vulnerability subscale. Scores in the upper quartile were more often reported by women (odds ratio 1.8) and by individuals with less education (OR 1.8). This study provides the first extended use of the Lynch syndrome self-concept scale and suggests that the majority of the Danish mutation carriers adapt well to the situation, though knowledge about the increased risk of cancer seem to have a greater impact in females, individuals with less education and those with experience of cancer in close relatives.

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The BRCA Self‐Concept Scale: a new instrument to measure self‐concept in BRCA1/2 mutation carriers

Cited by 53 publications

References 57 publications

Can self-esteem, mastery and perceived stigma predict long-term adjustment in women carrying a BRCA1/2-mutation? Evidence from a multi-center study

Can self-esteem, mastery and perceived stigma predict long-term adjustment in women carrying a BRCA1/2-mutation? Evidence from a multi-center study

Within-Gender Differences in Medical Decision Making Among Male Carriers of the BRCA Genetic Mutation for Hereditary Breast Cancer

Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study

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