Help with emotional stress of palliative care

Palliative Patient Voices Network offers information source online at sensitive time in people's lives.

  • Jun. 11, 2016 3:00 p.m.

Elisabeth Antifeau is a regional clinical nurse specialist

Interior Health is championing a new website initiative that helps people find resources when they need them most-at the end of life.

The initiative includes updated change to web pages and a new resource guide for patients and loved ones, along with the input and guidance of  Palliative Patient Voices Network volunteers.

“The information is very important at a sensitive time in people’s lives, when they are experiencing a lot of emotional stress,” said Elisabeth Antifeau, Interior Health regional clinical nurse specialist, palliative care.  “The information has to meet practical needs, but it also needs to be sensitive.”

The newly designed web pages are broken down into six easy-to-understand sections—what is palliative care; making the tough decisions; choosing care options; caregiving and supports; what to expect in the final days; and after death.

“Our Patient Voices volunteers generously contributed more than 12 hours of their time to guide the development of the web pages,” said Antifeau. “All of them spoke about their experience losing loved ones and these patient journeys helped us decide how to structure information on the website site. People can go to the section they feel is best for them, to find the information they are looking for quickly and easily.

“The volunteers also gave us important insight into the language used. For example, they agreed that it should be written in a personal way, using a voice that reflects the importance of intimacy for this topic. We heard loud and clear that this website should be speaking directly to the user, with clear, sincere language.”

Okanagan resident Diane Edlund was one of several volunteers from the Patient Voices Network who helped with the site. Edlund who lost both parents to cancer, says she finds volunteering in this capacity personally rewarding.

“It’s a great way to give back and I’m a real advocate of the Patient Voices Network, because their mandate is to include the patient voice not only in things like website and brochure development, but throughout the system, at a strategic level. I believe the patient voice needs to be heard, especially when we are talking about things that directly impact care,” Edlund said.

Visit the new Palliative Care section on the Interior Health website to learn more and to find palliative care resources, including the new Palliative Journey Resource Guide.For more information about the Patient Voices Network visit www.bcpsqc.ca.

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