Hinnovic » Patient manuals: Theory vs reality

Patient manuals: Theory vs reality

Patient manuals: Theory vs realityHome care technology can be pivotal in improving patients’ health and, in turn, their autonomy, mobility, and quality of life. When moved out of the hospital environment, intravenous (IV) therapy, oxygen therapy, parenteral nutrition (PN), and peritoneal dialysis (PD) enable fuller participation in personal relationships and important social activities such as work, travel, and family gatherings.

 

Intravenous therapy

Intravenous therapy

Oxygen therapy

 Oxygen therapy

Parenteral nutrition

Parenteral nutrition

 Peritoneal dialysis

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

Healthy, serene, mobile and sociable usersOur research shows that most patient manuals, whether produced by equipment manufacturers or hospitals, depict and are targeted towards a uniform, disembodied patient. This idealized end-user is characterized by the following traits:

  • 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.

 

Complex home care tasksMany of the tasks patients and caregivers must perform are quite complex. Here are some of the most common technical and knowledge-based tasks facing patients and caregivers:

  • 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 Oxygen-therapy patientwork and huge parts of their usual social activities. Many IV-therapy patients, meanwhile, felt that the technology was highly disruptive to their lives and some reported discomfort with having to monitor or intervene on the programmable pump. Similarly, we also heard from oxygen-therapy patients that the tubes, cylinders, and noises associated with this technology undermined their self-image and comfort being seen in public.

 

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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