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A key factor which may preclude disclosure of condition and access to social support is the stigma associated with certain long-term conditions such as mental health or Human Immunodeficiency Virus (HIV), (Williams and Healy, 2001, Fesko, 2001). A number of studies of long-term conditions have identified fear of stigma to be a reason for not disclosing their condition to others (Williams and Healy, 2001, Fesko, 2001, Joachim and Acorn, 2003, Chapple et al, 2004). Stigma has been associated with long-term conditions because one of the difficulties of living with them is the

negative impact they have on an individual‟s identity: being “discredited” or perceived as “different” to others around you (Goffman, 1963, Charmaz, 1983, Scambler, 1989, Rogers et al, 1999, Mason et al, 2001, Gabe, et al, 2004). The origins of research on stigma lie with the sociologist Erving Goffman who conducted

a seminal study of patients in a psychiatric hospital in the 1960s (Goffman, 1963). Goffman, (1963) has defined stigma as: “an attribute that is deeply discrediting within a particular social interaction”(p3). The original meaning of stigma stems from the Greeks and referred to those with physical marks on their body such as brandings. Such marks were seen as a token of shame or disgrace and thus denoted people to be avoided in public (Goffman, 1963). He argues that the majority, “the normal” group, perceives groups who are labelled with stigma as “inferior:” “by definition, of course, we believe the person with a stigma is not quite human”

(Goffman, 1963, p.15). In contrast “the normals” are those people who fit societies‟ expectations of a “normal identity.”

Goffman (1963) refers to: “the discredited and the discreditable.” In his view the people with stigma are “the discredited” and everyone knows about their limitation. In contrast, the “discreditable” controls who knows about his limitation which is not directly obvious to others. Goffman (1963) argues that there is a decision to be made concerning disclosure of information to others:“To display or not to display; to tell or not to tell; to let on or not to let on; to lie or not to lie; and in each case, to whom, how, when, and where”(p.57).

He refers to the process of hiding something discreditable as “passing” the intention of which is to remain part of the “normal” group. He refers to “covering” as a

process of not concealing the condition completely, but attempting to minimise its importance (Goffman, 1963).

To relate this to the current topic of disclosure of long-term conditions, those living with such conditions may therefore face a dilemma, to risk disclosing or not. Several

sword” (Williams and Healy 2001, Fesko, 2001). On the one hand, it may lead to not only a diagnosis but better social support, yet on the other hand it comes at the cost of disclosure which may result in one being stigmatised. Decisions as to whom to interact with are, he argues, a key issue for those with long-term conditions associated with stigma in order to: “minimize the obtrusiveness of their stigma”

(Goffman, 1963, p127). In other words, the “normals” are those who do not have a

long-term condition and so fit into societies‟ expectations of a normal “identity.”

However, Goffman‟s (1963) work on stigma is relatively dated now and it is important to consider whether perceptions of stigma have evolved over time, in terms of others reactions to disclosure. Furthermore it is questionable as to whether his terms can be applied universally, given that those living with long-term conditions are not a homogenous group.

A study of mental health service users highlighted such dilemmas for those considering disclosure of illness to others: “seeking help may result in a diagnosis…at the cost of disclosure and potential labelling and stigma” (Williams and Healy, 2001, p.115). Others have argued that in order to cope with the stigma associated with a long-term condition, strategic decisions must be made concerning disclosure of illness to whom and how much to tell others (Joachim and Acorn, 2000). A study of the rare disease scleroderma suggested that disclosure of illness was strategic because individuals selected whom to tell about their illness based on the assumption of positive responses: “most participants strategically decided when to tell and when not to tell about the illness” (Joachim and Acorn, 2003, p602).

Perceptions of the means by which the person contracted the long-term condition

study explored how participants living with lung cancer perceived and experienced

stigma. They found that others‟ views of the manner in which they had contracted lung cancer, for example through smoking, caused them to be stigmatised. This was particularly distressing for respondents, as some had contracted the disease through passive smoking, and not by actively smoking. Their study also found that such stigma may influence decisions to disclose to others and have far reaching effects

that may lead to not seeking appropriate clinical support: “…fear of disclosure may… prevent them from seeking support” (Chapple et al, 2004, p4). However, the topic of disclosure emerged as an unanticipated area of concern rather than the main focus of the study. Therefore whilst the issue of disclosure was raised, it was not discussed in-depth in the paper and further exploration of perceptions of disclosure may prove beneficial in the context of clinical support.

A study of mental health service users similarly argues that the stigma attached to such conditions may prevent individuals disclosing that they have the condition because they fear others‟ reactions (Williams and Healy, 2001). They argue that there is a need to explore the influence of social responses to a condition and its impact on people seeking clinical assistance for their conditions (Williams and Healy, 2001).