Lived-Privacy: Understanding the Variations in the Ways Patients Make Meaning of Their Privacy During a Hospitalization -- Susan E. Mazer, Student, School of Human & Organizational Development
Patient privacy is a pressing issue among patients and providers. Since the onset of the Health Insurance Portability and Accountability Act (HIPAA), the focus in the United States has been on tangible threats to confidential health information, mainly relating to informational privacy and electronic health records (EHR). However, the ways in which patients themselves make meaning of their privacy during a hospitalization has been ignored. Considering privacy’s elusive nature, this study uses phenomenography to capture and analyze the variations in tways patients make meaning of their privacy while hospitalized in facilities controlled and regulated by current statutes and historical ethics. Fourteen individuals over the age of 65 who had been hospitalized within the past 36 months participated in private, open-structured interviews. Themes were identified through multiple iterations of phenomenographic analysis and a hierarchy of understanding was developed into an outcome space. Results pointed to six themes: (1) Self-interest, core; (2) Protection of self from being subjected to others; (3) Defense of self in relationship to the other; (4) Safe-guarding of self from invasion by the other; (5) Self in relationship to perception of others’ judgment; (6) Self about self-perception of circumstances. Privacy is enmeshed with identity, security, self, and context. Its relevance was evidenced only in relationship to the Self in the presence of others, when the individual’s awareness of self to and by the other was threatened.
The study’s outcome space indicates that the privacy needs related to level of acuity of the patient. The higher the acuity, the lower the privacy need; the lower the acuity, the higher the privacy need. The results mandate that health care pofessionals recognize that patients and families might not trust the healthcare team due to privacy insecurities and consider these insecurities when assessing and treating patients.
How patients make meaning of their experiences regarding their privacy is inseparable from their total experience. Additional studies are needed to understand how privacy experiences impact their relationship to future clinical events, their levels of disclosure and non-disclosure, and their sense of security and insecurity. Other participant groups would yield additional insights or define data saturation