The child's eye: Memories of growing up with cystic fibrosis

Christian, Becky J.; D’Auria, Jennifer P.

doi:10.1016/s0882-5963(97)80016-4

Cited by 78 publications

(86 citation statements)

References 19 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…They had "to try twice as hard...to do as good as the other kids" 30 and found that physical exertion took a toll on their health and energy. Children felt upset about being too tired to play.…”

Section: Physical Incapacitymentioning

confidence: 99%

“…26 Children described being bullied or abandoned by others who thought CF was contagious: "All the kids saying 'eww'...then they would say 'Oh shut up AIDS girl.'" 30 Some felt that others accused them of using CF as an excuse to avoid school. CF was also believed to "jeopardize" romantic relationships, with 1 participant reporting that her past boyfriend "split" 31 when he found out she had CF.…”

Section: Social Isolationmentioning

confidence: 99%

See 1 more Smart Citation

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Jamieson¹,

et al. 2014

View full text Add to dashboard Cite

Section: Physical Incapacitymentioning

confidence: 99%

Section: Social Isolationmentioning

confidence: 99%

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Jamieson¹,

et al. 2014

View full text Add to dashboard Cite

“…17 They have a greater need to fit in with peers and are embarrassed by doing activities disdained by their peers. [17][18][19] These gender differences in adolescent development may be associated with our recent finding that, compared to boys, girls were more embarrassed about coughing and were more likely to skip taking medications and enzymes.…”

Section: Introductionmentioning

confidence: 99%

Associations of psychosocial factors with health outcomes among youth with cystic fibrosis

Patterson

Wall

Berge

et al. 2008

Pediatric Pulmonology

View full text Add to dashboard Cite

Summary. Purpose: The purpose of this study was to examine the relationship of strains, resources, feelings, and behaviors about treatment adherence reported by youth with cystic fibrosis (CF) with repeated clinic measures of their pulmonary function and nutritional status. Methods: Linear mixed models, stratified by gender, adjusting for age, were used to examine the effects of strains, resources, and adherence behaviors on repeated pulmonary function and nutritional status measures. All 10-21 years old with CF at the Minnesota Cystic Fibrosis Center were invited by mail to participate. Of these 177 youth, 51% (43 boys, 47 girls) returned surveys. Forced expiratory volume in 1 sec and predicted weight-for-height were extracted from participants' clinic records for the 18 months following receipt of the survey. Results: Females showed significantly greater variability in repeated measures of pulmonary function and nutritional status compared to males. Parent-youth strains, physical strains, activity limitations, and cough suppression had significant effects on the 18-month mean of pulmonary function measures for females, but only physical strains had a significant effect for males. Conclusion: Compared to males, females experienced more strains and poorer treatment adherence, which may be factors associated with declines in pulmonary function observed among females with CF during the adolescent years.

show abstract

“…Stigma involves an individual's social identity perceived as undesirable and different, a state that Goffman (1963) referred to as Bdiscredited^ (Ablon 2002). In chronic illness, the body's physical appearance can discredit an individual, while a Bhealthy^appearance can allow an individual with chronic illness to conceal their condition (Christian and D'Auria 1997;Joachim and Acorn 2000;Lowton 2004;Admi 1995). Individuals with cystic fibrosis (CF) reported hiding their condition during childhood in order to fit in socially (Christian and D'Auria 1997), while adults with severe signs and symptoms of CF were more likely to share their diagnosis than mildly affected adults who appeared Bhealthy^ (Lowton 2004;Modi et al 2010).…”

Section: Introductionmentioning

confidence: 99%

“…In chronic illness, the body's physical appearance can discredit an individual, while a Bhealthy^appearance can allow an individual with chronic illness to conceal their condition (Christian and D'Auria 1997;Joachim and Acorn 2000;Lowton 2004;Admi 1995). Individuals with cystic fibrosis (CF) reported hiding their condition during childhood in order to fit in socially (Christian and D'Auria 1997), while adults with severe signs and symptoms of CF were more likely to share their diagnosis than mildly affected adults who appeared Bhealthy^ (Lowton 2004;Modi et al 2010). The influence of physical appearance associated with illness has also been observed with conditions such as epilepsy and AIDS (Scambler and Hopkins 1986;Mansergh et al 1995).…”

Section: Introductionmentioning

confidence: 99%

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

et al. 2015

View full text Add to dashboard Cite

Hereditary hemorrhagic telangiectasia (HHT; OMIM 187300) is a disorder that affects 1:5000-1:10,000 people worldwide, with an estimated 60,000 affected individuals in the USA. Approximately 50 % of patients with HHT experience potentially life-threatening health complications such as stroke, brain abscess, or heart failure. However, the most common symptom is spontaneous and frequent nosebleeding. HHT is a hereditary condition with significant health consequences, but little is known about how individuals cope with HHT on a daily basis and how individuals share information about the disorder with social groups outside of the family. The objectives of this study were to improve understanding of the daily experiences of patients with diagnosed HHT and to investigate how they disclose their diagnosis to various social groups (friends, dating partners, employers, and coworkers) outside of their biological family. Adult patients seen at a university HHT clinic and who had been diagnosed with HHT for at least 6 months were recruited by mail. Participants completed semi-structured telephone interviews (n=19). A qualitative content analysis of interview transcripts identified four major categories: (1) the emotional impact of HHT, (2) the social impact of HHT, (3) concerns for current and future health related to HHT, and (4) social context drives disclosure of HHT. Participants reported that although HHT was a manageable hereditary disorder, the symptoms negatively affected their daily life. It is important for health care providers to understand how individuals with rare genetic disorders are managing.

show abstract

The child's eye: Memories of growing up with cystic fibrosis

Cited by 78 publications

References 19 publications

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Children's Experiences of Cystic Fibrosis: A Systematic Review of Qualitative Studies

Associations of psychosocial factors with health outcomes among youth with cystic fibrosis

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

Contact Info

Product

Resources

About