Experiences with smallpox: Stories of survivors and caregivers

The purpose of this study was to gather and record actual accounts of experiences with the disease of smallpox. Smallpox was a disease that was eradicated from the globe in 1978 but is also a disease with a potential use as a bioweapon. This study sought to determine what it was like to have had a direct experience with smallpox, whether as a survivor or as someone who cared for a victim. In addition, the study sought to answer questions about what treatments were used in the past as there is still no cure for smallpox today. Finally, prevention of the spread of smallpox is obtained through two mechanisms, quarantine and vaccination. The study sought to learn about experiences with these measures as conducted in the past.

The literature review for this study found documentation about the long history of the disease, the characteristics of the disease, vaccination, and the history of bioterrorism. Not found were the voices of experience...the stories of people who actually had the disease or assisted in caring for someone with smallpox. This study sought to fill that gap.

A blend of historical research and phenomenology was used to create the philosophical and theoretical framework for the study. The systematic steps used in historical research guided the study process while phenomenology was used in the analysis and interpretation of the collected experiences. Interviews were conducted and there were six participants in the study, three of whom were survivors. Two participants provided caregiver data, and the sixth participant was a secondary source (son of a survivor). Historical written data augmented the data about experiences collected during interviews. Over thirty written historical accounts (primary and secondary) of direct experience with smallpox were found and utilized in this study. The data analysis led to the development of six themes: (1) Disease, (2) Treatment, (3) Quarantine, (4) Vaccination, (5) Native Americans, and (6) Personal Views. All of the themes except the fifth, are further subdivided into subthemes.

Multiple conclusions were drawn from this study. Descriptions of the disease appeared to fit the characteristics described by the Centers for Disease Control and others. One surprising conclusion was the apparent frequency of initially misdiagnosing smallpox in the past. Quarantined persons in the past were at times reluctant to remain in quarantine. Another conclusion was the potential need for enforcement of quarantine orders by police, the National Guard, or the military.

Recommendations for nursing practice, nursing research, and nursing education were developed from the study conclusions. One primary recommendation is for nurses to be aware of the importance and value of their role should smallpox ever return. To fulfill this role, nurses need to be knowledgeable about the disease and the current treatment recommendations (including quarantine measures and vaccination), in addition to skill in infection control. Stories from the past may be valuable in preparing today's nurses to accomplish this role.