Does “home care” happen exclusively in a place called “home”? Or does it actually occur in several places, including out in the broader social world? And even when patients use their devices exclusively at home, are all their homes the same?
Truth is, there’s no universal place in which home care technology is used. Moving health technologies away from hospitals means patients will use them in a wide variety of private and public spaces.
For example, many patients will use devices in their bedrooms and bathrooms. Some will also use them in their friends’ living rooms as well as at the office and in shopping malls and parks. And to get them to those places, patients will transport their devices by planes, trains, automobiles, and other modes of transport.
The impact of place on patients
Home care technologies such as intravenous (IV) therapy, oxygen therapy, parenteral nutrition (PN), and peritoneal dialysis (PD) are used in wide variety of places. And where they’re used, we’ve found, directly affects patients’ perceptions and actions.
Being physically tied to machinery is a major concern for many patients. One oxygen-therapy patient we interviewed told us,
This quotation offers a clear glimpse of the pros and cons of home care technology: it is physically in the way but it saves a person from living in a hospital.
For some, physical inconvenience is worth the liberty it provides. One patient, however, told us, “It’s keeping me alive, but I’m not living.” For this person, technology’s limitations on his autonomy and mobility are not worth the benefits.
Place can also be connected to patient resistance. One IV-therapy patient, for example, told us that tasks related to the use of the technology should be the responsibility of nurses: “I refused to learn how to change the bag myself or programme the pump.” This patient’s views of professional responsibilities conflicted with the autonomy that, theoretically at least, ought to arise from importing technology to the home.
The impact of place on informal caregivers
When health technology is brought home, family members are often asked to provide technical and moral assistance. They also frequently must cope with a profoundly modified family situation in which, for the first time, they are asked to be caregivers. This sometimes requires them to limit their social activities and even quit their jobs. And in some cases, providing assistance will cause them pain and discomfort; for example, through physical manipulations or by administering intra-muscular drugs.
One very sad story we heard was from a PN patient whose husband left she and her son because he could not cope with his wife’s illness and the impact it had on their home life. We also interviewed a mother of a PN patient who was terrified of dying before her daughter: “Yes, I’m frightened,” she told us. “When I’m gone …. She doesn’t have any sisters, she has brothers but none of them would probably leave their job to take care of her.”
But caregivers also experience great happiness as a result of the home care option. As one told us: “I find it so wonderful that the air and the containers are delivered to us, right here at home. I think it’s marvellous.”
Home and hospital: When roles collide
In the case of rehospitalisation, patients often develop strategies to continue playing the roles assigned to them when at home, despite resistance from hospital-based providers. One PN patient told us how she imposed her own rules on hospital staff: “When I’m hospitalized, I tell them I will hook myself up at about that time, and ask them to place a sign on the door saying not to come in, and draw the curtain.”
On a slightly more aggressive note, we spoke with a PD patient who refused to administer his own haemodialysis in hospital. According to his logic, hospital staff administers treatments in hospital and patients administer treatments in their homes:
"If I come to the hospital, it’s for receiving treatments, not giving treatments to myself. There are plenty of doctors and nurses around, and you’re supposed to do it yourself?! It’s not logical. I’d rather do it myself at home."
So here are three patients actively importing their private, home-based autonomy into the public space of the hospital. In these and other cases, the role of place has an immense impact not just on physical behaviours but also on how one views the self and other people.
Summary and recommendation
Patients as well as professional an informal caregivers are often deeply ambivalent about the benefits and drawbacks of technology. Research, including our own, has clearly demonstrated that their attitudes vary according to where the home care devices are used: the place where care is delivered shapes patients’ understanding of everyone’s – including their own – roles and duties.
We therefore recommend greater study of the impact of place – in particular, the home – on the use of medical devices. If we are to design and implement more effective home care technology, much more needs to be understood about how the locations in which it is used affect quality of life, autonomy, mobility, and other essential factors.
Based on :Lehoux, P., J. Saint-Arnaud, & L. Richard. (2004)
Adapted by :Morgan Holmes, Ph.D.
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.