We investigated empowerment in the Alpha-1 Antitrypsin Deficiency (Alpha-1) community, a rare, genetic disease network in the United States. The research was motivated by nine years of observations in the community. After observing what seemed to be a heightened amount of activism among Alpha-1 community members, I had hypothesized that this community represents a model of empowerment, and designed a study to define and quantify empowerment from a community-based perspective.

Fieldwork was conducted from 2006 to 2008 to obtain the community’s definition of empowerment. Focus group sessions and semi-structured interviews were held to elucidate specific domains of patient empowerment. The data from the interviews and focus group sessions was analyzed, and a codebook was developed of the primary themes. These themes were used to build a theoretical model of empowerment, and to develop research questions about the relations of the various domains in the construction of empowerment. Data from office visits and physician-nurse interviews were analyzed using an ethnography-of-speaking approach towards understanding the hegemony, or balance of power, between physician and patient. Patient data was analyzed statistically to quantify the relations between components of empowerment.

The study confirmed the validity of a model of empowerment in the Alpha-1 community as a Guttman-like scale (Guttman, 1950). For, the components of empowerment identified in the community can be seen as a series of activities, and states of awareness, that evolved from simple to complex. Statistical analysis also confirmed hypothesized, and significant, relations between specific components of empowerment. However, the study did not demonstrate that empowerment indicated a loss of medical authority; rather empowerment was mastery of the language and knowledge of the medical domain. And, although, core components of empowerment are consistent among a range of Alphas, empowerment is best characterized as variable, even among this stable, closed population.

The study results could prove relevant to other types of patients, as core components of empowerment defined in the study are not unique to the Alpha-1 community. This includes the value of family support and networking, the importance of a community identity, and the positive impact an effective infrastructure provides.