Only when I Cough? Adults’ Disclosure of Cystic Fibrosis

Abstract

Cystic fibrosis has traditionally been conceptualised as a fatal childhood disease. In contrast, survival age has been increasing steadily such that adults now routinely seek to gain employment and form close relationships, situations that may require telling others about the disease. Here three situations of disclosure are examined, based on interviews with 31 adults with the disease. Firstly, in a low risk situation, for example a short period of social contact, a low level of intimacy exists between the adult with cystic fibrosis and another. Here the disease may be concealed easily with little risk of discovery. Secondly, in a medium risk situation the perceived reaction of the other begins to influence the decision to disclose, as the level of intimacy becomes higher. Lastly, in high-risk situations such as employment, the consequences of disclosing or concealing CF are most severe. However, a multiplicity of factors, including perceived social support and disease progression, are seen to influence adults' decisions to disclose their disease.

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

“…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).…”

“…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).…”

“…Medical factors included disease type, change in health status over time, and the possibility of concealing the condition as another less stigmatizing condition (Klitzman 2012;Klitzman and Sweeney 2011;Lowton 2004). Psychological factors encompassed negative outcomes such as fear of rejection or positive outcomes such as acquisition of emotional support (Lowton 2004;Klitzman and Sweeney 2011;Klitzman 2012).…”

“…Research on how individuals self-disclose with regard to a hereditary disorder has been examined in several conditions including CF, hereditary breast and ovarian cancer (HBOC), Huntington disease (HD), and alpha 1 antitrypsin deficiency (AAT) (Lowton 2004;Modi et al 2010;Klitzman and Sweeney 2011;Klitzman 2012;Hoskins et al 2008;Keenan et al 2013). A unique set of medical concerns, natural history, and treatment and management options for each hereditary condition may impact how individuals experience their condition on a daily basis, and this may alter an individual's motivation and need to share their diagnosis outside of family.…”

Vivendo com Fibrose Cística: a experiência da doença no contexto familiar

“…Outro estudo qualitativo sobre a experiência social de famílias com filhos dependentes de ventilação mecânica no domicílio, permitiu observar que, além das condições implícitas que dificultam a socialização destas crianças, potencialmente estigmatizantes, tais como traqueostomia, dependência total dos cuidados para as funções básicas e dificuldade na comunicação; a família, como um todo, passa a sofrer o estigma pelo isolamento social, decorrente das condições do filho doente, o que a torna desviante da família padrão (CARNEVALE, 2007 Lowton (2004), anteriormente mencionado, evidencia que, em um nível avançado da doença, quando essa passa a ser fisicamente perceptível pelo emagrecimento, debilidade física e dificuldade respiratória, ela é também desidentificada, assemelhando-se à AIDS. Neste momento, o medo do estigma pela transmissibilidade e pelo próprio estigma relacionado à AIDS, é mais significativo e a revelação da FC pode ter uma conotação mais positiva do que anteriormente, podendo ser realizada de maneira mais constante.…”