Gene/Protein Disease Symptom Drug Enzyme Compound
Pivot Concepts:   Target Concepts:
Query: UMLS:C0277787 (stigma)
 13,352 document(s) hit in 31,850,051 MEDLINE articles (0.00 seconds)

We offered cystic fibrosis (CF) carrier testing to reproductive-age enrollees in an HMO, in order to determine factors associated with test utilization in a primarily nonpregnant population. Male and female enrollees either were mailed an invitation to have the test after attending an educational session (N = 2,713) or were approached in waiting rooms at the HMO sites and given the opportunity to have the test without making an additional visit (N = 608). Uptake was considerably higher when testing could be obtained without making an additional visit (23.5%) than when attendance at an educational session was required as a prerequisite for having the test (3.7%). Utilization was higher among respondents who were planning children. Caucasians, and those with higher educational attainment. Among respondents planning to have children, individuals with higher tolerance for test uncertainty, lower fear of stigma, and higher perceived risk of being a carrier were significantly more likely to have the test. Testing decisions were not associated with the perceived burden of a child with CF or with the likelihood of aborting for CF. Although utilization of CF carrier testing is relatively low among nonpregnant individuals, uptake is significantly higher when testing can be obtained with minimal effort. Factors associated with the decision to be tested had more to do with implications of being a carrier per se than with the concerns of having a child with CF.
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PMID:Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization. 794 40

We assessed cystic fibrosis (CF) knowledge and emotional consequences of CF population testing 18 months after screening was offered. Questionnaires were sent to 593 individuals and 353 responded (59.5%). All respondents had sound knowledge of CF disease, although carriers were more likely to correctly state the pattern of CF inheritance and CF carrier rate in Australia. Eleven of 47 carriers falsely believed they were only very likely to be carriers, while nearly a third of test-negative individuals falsely believed they were definitely not carriers. Imprecise recall of the meaning of results may be due to memory loss over time, simplification of result meaning and minimization of risk. The Health Orientation Scale (HOS) was used to assess emotional consequences of CF carrier testing 18 months after testing. Both carriers and test-negative individuals thought most carriers would experience more negative feelings than most non-carriers. Carriers experienced less positive feelings about their test result compared to non-carriers. Interestingly, the carriers' own feelings about their result were more positive compared to how they thought most carriers would feel. These results suggest that carriers experience minimal adverse psychological effects, although a negative social stigma may be attached to carrying the CF gene mutation.
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PMID:Population screening for cystic fibrosis: knowledge and emotional consequences 18 months later. 1283

The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly for adolescents who are prone to peer pressure. The problem of carrier screening in the schools is compounded when the condition has a predilection for certain groups based on race, ethnicity or religion. I examine programs around the world that seek to test high school students for Tay Sachs and Cystic Fibrosis carrier status. I argue that carrier programs should be designed so as to minimize stigma and to allow individuals to refuse. The mandatory school environment cannot achieve this. Rather, I conclude that screening programs should be designed to attract young adults and not adolescents to participate in a more voluntary venue.
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PMID:Heterozygote carrier testing in high schools abroad: what are the lessons for the U.S.? 1719 18

This replicated study explores the ordinary people theory generated in the original research among American youth with cystic fibrosis through the experience of Israeli youth with epilepsy. The authors used the qualitative life history method in a sample of 14 adolescents and young adults with epilepsy. They employed the constant comparative method of analysis to analyze the data collected from the in-depth interviews. The results show that epilepsy was not central to the participants' everyday lives. Their perceptions of the disease followed developmental stages. The authors found that coping methods were adaptive and took into account social stigma and practical outcomes. This study provides a positive and normalcy perspective of exploring the lifestyle of people with chronic diseases and disabilities as opposed to deficit models. It adds to the trustworthiness of the model's cross-cultural applicability through its use in a different context among a population with a different diagnosis.
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PMID:Living with epilepsy: ordinary people coping with extraordinary situations. 1796 35

We conducted an empirical pilot study to assess the attitudes of health care professionals (HCPs) to the personal identification of heterozygote carrier status for two autosomal recessive conditions (cystic fibrosis and a hemoglobinopathy) and for an X-linked disorder (Duchenne muscular dystrophy) using the Health Orientation Scale (HOS) and a modified HIV Stigma Scale. Attitudes towards carrier identification of children were also assessed. Three hundred and ten of 742 (42%) eligible HCPs fully or partly completed the survey. As measured with the HOS and the modified HIV scale, respondents had a more negative reaction to the hypothetical discovery of being a carrier for an autosomal recessive genetic condition that was less likely given their self-identified ancestry. Female respondents had a more negative reaction on both scales to being a carrier for an X-linked disorder than men thought their partners would feel. However, the differences found on the HOS and modified HIV scale are small and their clinical relevance unknown. Fifty-seven percent of respondents agreed that parents should tell their children to keep their carrier status private with many (44%) agreeing that children who learn that they are carriers may suffer from a decrease in self-esteem. The vast majority of respondents would inform immediate family members and HCPs of their carrier status, but would be unlikely to share this information with neighbors or employers. Further study is needed to develop a heterozygote genetic carrier stigma scale.
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PMID:A pilot study to determine whether health care professionals perceive stigma in heterozygote carrier identification and disclosure decisions. 2173 84

Cystic fibrosis (CF) is a lethal genetic disease, yet improved care has extended the mean age of survival into the young adult years. Many of the surviving adolescents have respiratory and digestive problems which delay growth and sexual development. It has been suggested that the specter of fatal disease interferes with adjustment to adolescence. We administered the Offer Self-Image Questionnaire to three groups with mean height less than the fifth percentile: CF males aged 12-19 (n=16); CF females aged 12-19 (n=8); and otherwise healthy males with short stature and/or delayed puberty aged 13-19 (n=34). The values obtained were compared to published normative data for a large number of normal adolescents and a smaller number of adolescents actively undergoing treatment for emotional disorders. CF males showed an abnormal pattern of adjustment that could be considered comparable to disturbed males and to growth-delayed and sexually delayed males. The CF female group was concordant with the normal population, rather than with the emotionally disturbed population. Thus CF and pubertally delayed males have a self-perception of maladjustment to the psychologic problems of adolescence. This suggests that adjustment problems of the CF male may be related to growth retardation and pubertal delay, the social stigma of which may be more easily disguised in the female. This is important in health care, since recent evidence suggests that exemplary attention to medical compliance and nutrition may ameliorate some of the growth lag both in pubertal delay and CF.
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PMID:Self-image of adolescents with cystic fibrosis. 2431 12

The stigma of non-communicable respiratory diseases (NCRDs), whether perceived or otherwise, can be an important element of a patient's experience of his/her illness and a contributing factor to poor psychosocial, treatment and clinical outcomes. This systematic review examines the evidence regarding the associations between stigma-related experiences and patient outcomes, comparing findings across a range of common NCRDs. Electronic databases and manual searches were conducted to identify original quantitative research published to December 2015. Articles focussing on adult patient samples diagnosed with asthma, chronic obstructive pulmonary disease (COPD), cystic fibrosis, lung cancer or mesothelioma, and included a measurement of stigma-related experience (i.e. perceived stigma, shame, blame or guilt), were eligible for inclusion. Included articles were described for study characteristics, outcome scores, correlates between stigma-related experiences and patient outcomes and methodological rigor. Twenty-five articles were eligible for this review, with most ( n = 20) related to lung cancer. No articles for cystic fibrosis were identified. Twenty unique scales were used, with low to moderate stigma-related experiences reported overall. The stigma-related experiences significantly correlated with all six patient-related domains explored (psychosocial, quality of life, behavioral, physical, treatment and work), which were investigated more widely in COPD and lung cancer samples. No studies adequately met all criteria for methodological rigor. The inter-connectedness of stigma-related experiences to other aspects of patient experiences highlight that an integrated approach is needed to address this important issue. Future studies should adopt more rigorous methodology, including streamlining measures, to provide robust evidence.
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PMID:Stigma-related experiences in non-communicable respiratory diseases: A systematic review. 2811 91