Cystic fibrosis disclosure may minimize risk of negative peer evaluations

Berlin, Kristoffer S.; Sass, Daniel A.; Davies, W. Hobart; Jandrisevits, Matthew D.; Hains, Anthony A.

doi:10.1016/j.jcf.2005.05.012

Cited by 17 publications

(12 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Our finding that disclosure is associated with a perceived neutral or positive effect on most relationships supports a previous study indicating that lack of disclosure can negatively impact peer evaluations[13]. Specifically, without an awareness of an individual's diagnosis of CF, peers may attribute symptoms or social absences to other problems, which can lead to negative attributions and appraisals.…”

Section: Discussionsupporting

confidence: 84%

“…Two particularly interesting aspects of this study were the perceived effects of CF disclosure on relationships and how these vary by type of relationship, disease severity, and gender. The decision to disclose CF was shown to be influenced by these factors, which are likely linked to perceptions of the risks and benefits of disclosure [3,4,12,13]. …”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Assessing disease disclosure in adults with cystic fibrosis: the Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis

2010

View full text Add to dashboard Cite

BackgroundAs more patients with cystic fibrosis (CF) reach adulthood and participate in age-appropriate activities (e.g. employment, dating), disclosure of medical status becomes more important. This study assessed rates of disclosure and its perceived impact on relationships using the Adult Data for Understanding Lifestyle and Transitions (ADULT) online survey.MethodsAdults with CF participated in the survey via the United States national network of CF Centers. Descriptive and inferential statistics were utilized.ResultsParticipants (n = 865) were more likely to disclose to relatives (94%) and close friends (81%) than to dating partners (73%), bosses/supervisors/teachers (51%) or co-workers (39%). Respondents generally reported a neutral/positive effect on relationships following disclosure. Negative effects of disclosure were infrequent, but more likely with dating partners or bosses/supervisors/teachers. Results also indicated that disclosure may be influenced by severity of lung disease and gender, with those having normal/mild lung disease less likely to disclose their diagnosis to both co-workers (p < 0.01) and bosses/supervisors/teachers (p < 0.01), and women being more likely to disclose to close friends (p < 0.0001) and dating partners (p < 0.05) than men.ConclusionsMost adults with CF disclosed their disease to relatives and close friends. Individuals with severe CF lung disease were more likely to disclose their diagnosis to coworkers and supervisors/teachers. It may be helpful to provide support for disclosure of disease in situations such as employment and dating.

show abstract

Section: Discussionsupporting

confidence: 84%

Section: Discussionmentioning

confidence: 99%

Assessing disease disclosure in adults with cystic fibrosis: the Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis

2010

View full text Add to dashboard Cite

show abstract

“…Finally, in relation to instrumental support, the findings corroborate a large body of existing research which illustrates the benefits of social support (Pakenham, Chiu, Bursnall, & Cannon, 2007;Maslow, Haydon, McRee, Ford, & Halpern, 2011). Indeed, when individuals with CF disclose their condition to peers, this can often reduce negative peer evaluations (Berlin, Sass, Hobart Davies, Jandrisevits, & Hains, 2005), perhaps enhancing perceived emotional QOL.…”

Section: Discussionsupporting

confidence: 79%

Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life

Hugh

McFeeters

Boyda

et al. 2015

Psychology, Health & Medicine

View full text Add to dashboard Cite

As life expectancy increases, interest has grown surrounding the factors that may influence quality of life (QOL) for people with cystic fibrosis (CF). The aim of the current study was to examine which specific coping styles were positively or negatively associated with social and emotional QOL in a CF sample. One hundred and twenty-two respondents aged 18 and over were recruited through an online support group. Respondents completed the 'CF Questionnaire-Revised (CFQ-R)' and the 'Brief COPE'. The CFQ-R is a disease-specific instrument designed to measure the impact of CF on nine QOL domains and the Brief COPE is a 28 item questionnaire which assesses 14 coping scales. A multivariate regression model revealed that higher substance abuse and disengagement was associated with lower emotional QOL whereas greater use of religion, instrumental coping and acceptance was positively associated with emotional QOL. Active coping was linked to better social QOL and a negative association was reported between distraction coping with both emotional and social domains. Given the burden of CF, ascertaining which factors enhance or diminish emotion and social well-being is now an integral component of QOL research. The current findings may therefore have value in informing clinical interventions which aim to cater for the psychological needs of individuals with CF.

show abstract

“…Even with supportive peers, children seek to diminish the emphasis placed on their illness. Unfortunately, children are often unsuccessful at truly hiding the more “visible” aspects of the disease, and may in fact be setting themselves up for worse peer issues because providing the CF context for atypical behaviors may minimize negative peer perceptions(33). Keeping illness status a secret can also negatively impact the ability to develop and maintain intimate friendships(31–32).…”

Section: School Agementioning

confidence: 99%

Developmental and Psychosocial Issues in Cystic Fibrosis

Ernst

Johnson

Stark

2010

Child and Adolescent Psychiatric Clinics of North America

View full text Add to dashboard Cite

SynopsisCystic Fibrosis (CF) is a multi-systemic life-limiting genetic disorder, primarily impacting respiratory functioning. Most patients with CF are diagnosed by 2 years of age, and the current median predicted survival rate is 37.4 years old, with 95% of patients dying from complications relate to pulmonary infection. Given the chronic, progressive and disabling nature of CF, multiple treatments are prescribed, most on a daily basis. Thus, this illness requires children, with the aid of their families, to adopt multiple health-related behaviors in addition to managing more typical developmental demands. The morbidity and mortality factors pose cognitive, emotional and behavioral challenges for many children with CF and their families. This article will apply a developmental perspective to describing the psychosocial factors impacting psychological adjustment and health-related behaviors relevant to infants, preschool and school age children, and adolescents with CF. Topics particularly pertinent to developmental periods and medical milestones will be noted, with clinical implications highlighted.

show abstract

Cystic fibrosis disclosure may minimize risk of negative peer evaluations

Abstract: Individuals who disclose their CF may potentially curtail negative peer perceptions. Those who choose not to disclose may risk having their thinness and appropriate self-care misperceived as signs of an eating disorder.

Cited by 17 publications

References 19 publications

Assessing disease disclosure in adults with cystic fibrosis: the Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis

Assessing disease disclosure in adults with cystic fibrosis: the Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis

Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life

Developmental and Psychosocial Issues in Cystic Fibrosis

Contact Info

Product

Resources

About