Safety vs. Privacy: The Use of a PERS by Frail, Older Women

CELEBRATING THE RESEARCH OF DR. EILEEN PORTER

Dr. Eileen Porter’s research interests have their roots in her childhood: the small Kansas town in which she grew up had a robust intergenerational social network. Porter spent a lot of time with her grandparents and their friends and developed strong bonds with the older adults in the community.[i] These relationships informed her research interest in the healthcare needs and challenges faced by women in their 80s and 90s who live alone.

One of Porter’s particular areas of interest is the use of personal emergency response system buttons (PERS) by older, frail women. These women are often at risk of medical emergencies such as falling or passing out, which can be very dangerous if they are not found within a short period of time.[ii] PERS subscribers are often more able to contact help when they need it, thus reducing their number of hospital visits and allowing them to continue living independently in their own home.[iii] However, a broad analysis of the benefits enjoyed by PERS users does not show the whole picture; in the United States, PERS users make up less than 6% of the individuals over the age of 65, even though researchers estimate that many more people may need them.[iv] If the benefits of using a PERS are so notable, then why don’t more people have a PERS button? According to Porter’s analysis of women who subscribe to a PERS, there are several major factors that influence their personal experiences with a PERS button, which may help answer this question.

The first element is the most obvious: access to and knowledge of the PERS as a home health device. Although technological improvements make the PERS available to people all over the country, that does not mean that all older adults can access a PERS. For those covered by Medicare, the PERS is an out-of-pocket expense, since it is not eligible for a waiver. Although the monthly cost is relatively low, the older person still may not be able to comfortably pay for it. [v]  Furthermore, older adults who are poor and Black are often less aware or completely unaware of home healthcare services like the PERS.[vi] A lack of knowledge or funds for the PERS, therefore, may be a significant reason for the low percentage of PERS use by older adults.

The second element is related to a person’s perception of him or herself. The majority of the women that Porter surveyed for her research saw the PERS as an unwelcome symbol of their frailty and increasing dependence on outside help.[vii] These women were aware of their health status, but they were also determined to hold on to as much independence as possible; the PERS exerted a negative influence by making them acutely aware of their multiplying health needs. In response, many of the women only wore their buttons occasionally, and never without a feeling of negativity.[viii]

The third element is the nature of the PERS itself. The PERS button is designed to be easy to push, which means that it can sometimes be activated accidentally. Several of the women interviewed in Porter’s studies related stories in which they were startled by unexpected visitors or strange voices in their homes.[ix] These stories show the impact of the PERS on the women’s perception of privacy and security at home: the constant connection to emergency responders can actually decrease a person’s sense of safety when the responders make contact unexpectedly. Furthermore, some women described the PERS as “having a mind of its own” when emergency personnel were contacted without the women being aware of having pressed the button.[x] They worried about these accidental contacts, interpreting them as bothersome or worrisome to others, which caused them to think twice about wearing the buttons at all times.[xi]

Porter has done what earlier researchers did not: she has listened to the experiences, perceptions, and ideas of women who are part of the PERS’s target demographic in order to highlight what is and is not working. Her studies indicate that health care providers need to take into account the factors that may discourage older, frail women from using a PERS. She suggests that demonstration units be available at health care providers’ offices, community centers, and other places that older adults might frequent.[xii] Providers might also consider keeping a registry of older persons who could benefit from a PERS and contacting them periodically with the intention of increasing awareness of and familiarity with the PERS.[xiii] Such measures may help increase the access that older adults have to the PERS, as well as calming any fears they have about losing privacy. In addition, Porter suggests that PERS providers re-design the buttons to make them both more attractive and more difficult to activate accidentally.[xiv] People who feel intruded upon by the PERS might be more satisfied with this kind of overhaul, since it would reduce instances of unexpected voices or visitors and would minimize the PERS’s visibility as a medical device. Porter’s research has opened the door for a real dialogue between health care providers and clients which will have a positive impact on the quality of care and quality of life enjoyed by clients such as the women she interviewed for her studies.

– Jennifer Morgan