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Mature couple working on the computer together (Stockbyte/(c) Stockbyte)
Mature couple working on the computer together (Stockbyte/(c) Stockbyte)

Building a web of care, the wiki way Add to ...

When Cynthia Brouse prepared herself for radiation and chemotherapy to treat a second round of breast cancer, at age 51, she didn't buy herself a wig - she built herself a wiki.

The website she created allowed friends and family to read updates on her health and find out when she was in hospital for treatments and when she was recovering alone at home.

The wiki doubled as an interactive calendar, says Jocelyn Laurence, a friend and colleague in the magazine industry. Instead of wondering how they could help, friends could sign up for tasks online, such as driving Ms. Brouse to an appointment with a specialist or bringing her a meal.

Eventually, members of her core support team began using different colours on the site so they knew at a glance who was writing, Ms. Laurence says.

As Ms. Brouse grew weaker before her death in June last year, online messages became a tactful way to reschedule visitors who might have overtaxed her by arriving the same day.

"The whole thing meant that Cynthia didn't have to be on the phone and have people call her constantly," Ms. Laurence explains. "It was fantastic."

For a growing number of patients, social-networking services have replaced the telephone chains that families used to use to alert kin about a loved one's health crisis.

In recent years, free websites such as CareCentral.com and TelltheFamily.com have emerged for families to set up patient websites that resemble blogs.

Most of the sites, supported by advertising, act as a family message centre and automatically send e-mail updates to people who request them. Families can expand their care-giving networks by inviting friends to join, and recruit volunteers to sign up for errands listed on web pages that are password-protected so that only friends, family and colleagues can read them.

"People find them incredibly helpful," says Sholom Glouberman, founder of the Patients' Association of Canada.

The sites make it easy for people to declare their presence in a patient's life even if they can't visit in person, Mr. Glouberman says. "Virtual caring" is usually appreciated, he adds, and may put less pressure on patients who are sick in a hospital.

"You don't have to have the whole family out in the corridor and making chicken soup."

Newer sites, such as eCareDiary.com and CareFlash.com, are better suited to patients' needs than Facebook because they include group calendars and other tools that help family members organize volunteers.

"Energy is spent helping, not scheduling," according to LotsaHelpingHands.com, which notifies members when new tasks are posted and even sends reminders so volunteers don't forget to pitch in.

For patients blessed with reliable friends, the websites may help ease the burden on primary caregivers while providing a face-saving way to ask for unpaid help.

Tellthefamily.com suggests its website helps reduce phone calls to nurses on hospital wards, freeing up more time for patient care.

But do-it-yourself websites may work just as well.

Brenda Odovichuc, a breast cancer patient in Red Deer, Alta., started her own blog at Brendabreastcancer.blogspot.com to avoid being deluged with phone calls after her diagnosis. "It was getting too much to repeat the same news over and over again," she writes.

Later, her husband Carman wrote updates when she felt too ill to do so, and together they used the blog to gather support for others. After meeting a new mother in hospital whose 27-year-old husband was ill with cancer, Ms. Odovichuc posted a wish list of donations on her own blog. Within days, members of her social network dropped off boxes of clothing, blankets, diapers, gift cards and cash for the new parents.

Blogging from a hospital is only possible with Internet access, of course. Until recently, hospitals were technological dead zones for patients and their families, but things are changing.

Hospitals across Canada have begun to relax restrictions on cellphone use except in surgical areas and around equipment such as X-ray machines. In some hospitals, patients can log onto the Internet using laptops and smart phones as long as they pay for Internet service from a third-party provider, such as Bell Mobility or Telus. Other facilities, such as BC Women's Hospital and Health Centre in Vancouver and the Hospital for Sick Children in Toronto, have computers with free Internet access in visitor lounges.

Sunnybrook Health Sciences Centre in Toronto offers free wireless service throughout most of its facilities. For patients who don't have laptops or are too ill to use them, family and friends can send an e-mail through Sunnybrook.ca that is delivered in a printout to the patient's room.

Many elderly patients use Facebook, e-mail and Skype to keep in touch with family members, says Heather Sherrard, vice-president of clinical services at the University of Ottawa Heart Institute. Patients at the institute are offered a password to log on to the Internet as part of the admission process, she says. Since patients are often far from home, "they feel more connected" with Internet access.

Ms. Laurence notes that social-networking tools can be a godsend for friends and family when a health crisis lasts for more than a year, as it did for Ms. Brouse.

Her late friend's wiki was simple enough that even her least computer-savvy family members and acquaintances could use it, she adds.

"I think they wanted to be involved," she says, "and they loved being directed."

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Follow on Twitter: @AdrianaBarton

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