Patient manuals: Theory vs reality





Intravenous therapy

Oxygen therapy

Parenteral nutrition

Peritoneal dialysis

For many people, however, home care technology also imposes restrictions that are associated with the nature of their diseases as well as with their individual abilities, beliefs, housing, and finances.

A full understanding of the role of home care technology needs to take stock of what patient manuals “say” as well as the challenges patients face and fear. In this blog entry we therefore unpack some of the claims manufacturers make about the liberating potential of home care technology and then balance those with reports of patients’ and caregivers’ real-life experiences using the devices.

What the manuals claim



Good health

Serenity

Mobility

An active social life


Most manuals are also written as though all patients have very similar cognitive, linguistic, and physical abilities.


Finally, nearly all the manuals we consulted present information in a linear, step-by-step fashion. The assumption here is that technology users (whether patients, informal caregivers, or even nurses) will learn how to use the equipment and experience incidents in an orderly chain of events.

The realities of patients’ lives


Our research found a sizeable gap between the ideal world of manuals and the real world patients inhabit.


Connecting tiny tubes and washers

Disinfecting surfaces and objects

Washing hands

Changing batteries

Handling syringes and biomedical waste

Cognitive tasks include:

Recognizing different bottles of fluids

Reading instructions on a digital screen

Understanding visual and sound alarms

Counting volumes and setting rates

Monitoring skin colour, body weight, and temperature

Remembering steps and planning ahead


Some patients, of course, have no trouble dealing with these tasks. Other patients start off well but then, as they age or their medical conditions become more complex, experience problems coping with the technological demands. And some patients, right from the start, find the tasks a constant struggle.


One of the most vivid examples we encountered of this last situation involved a patient who was illiterate, and who therefore had to rely on her memory and a nurse’s audio-taped instructions and colour-coded diagram in order to operate her PN pump. Another PN patient experienced severe anxiety about the technology; she sweated, shook, and hesitated for up to 15 minutes each time she had to begin her treatment.


The autonomy and mobility imagined by patient manuals also got rather frayed in our research. For instance, our interviews and observations revealed that most PN patients had to abandon paid

Summary and recommendation


Patient manuals and brochures describe a standardized, predictable, and highly organized way of using technology. And technology is depicted as a life-saving device that fits neatly into users’ lives. It supposedly enables them all to sustain their “normal” lives far from hospitals.

Given the wide variety of patients and disease states, it is impossible for this rosy picture to conform to real-life experiences. We therefore strongly recommend that manufacturers and hospitals revise their assumptions about and representations of the straightforwardness of using home care technology. More realistic depictions of patients’ lives in connection with life-saving medical equipment – including the negative or challenging aspects – must become standard features of the information provided to those who depend on and use high-tech health innovations.

Based on :Lehoux, P., J. Saint-Arnaud, & L. Richard. (2004)Adapted by :Morgan Holmes, Ph.D.

REFERENCES


Lehoux, P., J. Saint-Arnaud, & L. Richard. (2004). The use of technology at home: What patient manuals say and sell vs. what patients face and fear. Sociology of Health & Illness 26.5: 617-644.

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