The FAP self-concept scale (adult form)

Esplen, Mary Jane; Stuckless, Noreen; Berk, Terri; Butler, Kate; Gallinger, Steve

doi:10.1007/s10689-008-9204-x

Cited by 13 publications

(10 citation statements)

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“…Though self-concept remains relatively stable throughout life, it may change during difficult periods or due to crises that evoke feelings or alter perceptions about one's identity. Recently, self-concept scales for hereditary cancer have been developed and applied to cohorts affected by hereditary breast and ovarian cancer, familial adenomatous polyposis and most recently Lynch syndrome (Esplen et al 2009a(Esplen et al , b, 2010. The Lynch syndrome self-concept scale contains general items related to self-concept (e.g., feelings of guilt and isolation, vulnerability, and sense of being labeled) as well as specific items (e.g., worry about bowel symptoms and anxiety at cancer surveillance) ( Table 1).…”

Section: Introductionmentioning

confidence: 99%

Validation of a Self‐Concept Scale for Lynch Syndrome in Different Nationalities

Petersen

Domanska

Bendahl

et al. 2011

Journal of Genetic Counseling

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Learning about hereditary cancer may influence an individual's self-concept, which otherwise represents a complex but stable cognitive structure. Recently, a 20-statement self-concept scale, with subscales related to stigma-vulnerability and bowel symptom-related anxiety, was developed for Lynch syndrome. We compared the performance of this scale in 591 mutation carriers from Denmark, Sweden and Canada. Principal component analysis identified two sets of linked statements-the first related to feeling different, isolated and labeled, and the second to concern and worry about bowel changes. The scale performed consistently in the three countries. Minor differences were identified, with guilt about passing on a defective gene and feelings of losing one's privacy being more pronounced among Canadians, whereas Danes more often expressed worries about cancer. Validation of the Lynch syndrome self-concept scale supports its basic structure, identifies dependence between the statements in the subscales and demonstrates its applicability in different Western populations.

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Section: Introductionmentioning

confidence: 99%

Validation of a Self‐Concept Scale for Lynch Syndrome in Different Nationalities

Petersen

Domanska

Bendahl

et al. 2011

Journal of Genetic Counseling

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“…In hereditary cancer, self-concept may influence how mutation carriers adopt to the situation and whether individuals at risk participate in surveillance programmes. Self-concept scales have been developed for hereditary breast and ovarian cancer (BRCA1/2) [25], familial adenomatous polyposis (FAP) [26] and most recently for Lynch syndrome [18,27]. The self-concept scales differ from the more global depression and anxiety scales in taking specific psychological issues related to the specific type of hereditary cancer into account and may thereby contribute to the identification of individuals in need of extended support.…”

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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“…There also are aspects of illness self-concept that have been assessed, including the extent to which one feels good about the self and the stigma associated with illness (19,20). Researchers often ask one of two questions.…”

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confidence: 99%

“…There are many dimensions of illness that have been explored by earlier research, such as the perception of an illness's consequences, perceptions of personal control over illness, and attributions for illness [16][17][18]. There also are aspects of illness self-concept that have been assessed, including the extent to which one feels good about the self and the stigma associated with illness [19,20]. Researchers often ask one of two questions.…”

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confidence: 99%

Survivor centrality among breast cancer survivors: implications for well‐being

Helgeson

2011

Psycho-Oncology

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Objective-The goal of this research was to examine the extent to which 10-year breast cancer survivors integrated cancer into their self-concept (i.e., survivor centrality), identify predictors of survivor centrality, and determine the relation of survivor centrality to well-being.Methods-Breast cancer survivors (n = 240) were interviewed 10 years following the initial diagnosis. They completed measures of survivor centrality, illness valence (i.e., positive or negative views of illness), and well-being (positive and negative affect, mental and physical functioning, psychological distress, benefit-finding).Results-There were few predictors of the kinds of women who were more likely to integrate breast cancer into their self-concepts, but survivor centrality was related to engaging in behaviors that suggested survivorship was relevant to women's daily lives, such as becoming involved in breast cancer activities. Survivor centrality was related to three markers of negative psychological well-being: more negative affect, poorer mental functioning, and greater psychological distress. However, in the case of negative affect and psychological distress, this relation was moderated by illness valence, such that survivor centrality was only related to negative psychological well-being when the illness was viewed in less positive terms.Conclusions-Women vary in the extent to which they define themselves in terms of the breast cancer experience. Survivor centrality in and of itself is not always indicative of adjustment to disease. When women have a more negative view of being a breast cancer survivor, survivor centrality is more likely to signify potential problems. Keywords breast cancer; survivorship; self-concept; well-being Scientists in the area of psycho-oncology have been studying women's adjustment to the diagnosis and treatment of cancer for several decades now (1-4). With the improvement in early detection procedures and the development of more effective treatments, the prognosis for breast cancer has improved dramatically. Thus, researchers have begun to examine survivorship issues. Whereas most studies show that survivors, on average, do not show elevated levels of general distress, such as anxiety or depression, compared to healthy controls or population norms (5-7), moderate levels of cancer-specific worries persist (8). General quality of life measures do not capture the subtleties in long-term survivorship (7). With time, stress related to the diagnosis and treatment of cancer diminishes and some of the memories associated with the trauma wane, but other sources of stress persist. Survivorship issues have centered on fears of recurrence, the long-term effects of treatment, concerns Please address all correspondence to the author at Department of Psychology, Carnegie Mellon University, Pittsburgh, PA 15213 or vh2e@andrew.cmu.edu. NIH Public Access Author ManuscriptPsychooncology. Author manuscript; available in PMC 2012 May 1. NIH-PA Author ManuscriptNIH-PA Author Manuscript NIH-PA Author Manuscrip...

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The FAP self-concept scale (adult form)

Abstract: A promising new scale for measuring self-concept among adults with FAP has been developed. The instrument has potential use as a clinical screening tool and a research measure that will contribute to the empirical and theoretical literature.

Cited by 13 publications

References 56 publications

Validation of a Self‐Concept Scale for Lynch Syndrome in Different Nationalities

Validation of a Self‐Concept Scale for Lynch Syndrome in Different Nationalities

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

Survivor centrality among breast cancer survivors: implications for well‐being

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