The rehab experience Learning from patients and their families

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“When something like traumatic injury or severe illness occurs, it doesn’t happen just to the individual. It happens to the entire family.”

Leslie Bolt speaks from experience. She suffered a brain injury as a result of difficult brain surgery in 2000. Since that time she and her husband have been getting what she describes as “a new education” – learning about neuro-rehabilitation firsthand as a patient and caregiver.

Jim O’Neill also knows a thing or two about rehab. Struck suddenly with acute respiratory distress syndrome (ARDS) two years ago, he went from flu-like symptoms to near death in 24-hours, and then began a long, slow process of recovery and rehabilitation. There was no question about the role his partner of 32 years, Patrick Conlon would play. “I was going to be there for all of it,” says Patrick.

Last month, Leslie, Jim and Patrick brought their experiences as patients and family member to a panel discussion at GTA Rehab Network’s annual Best Practices Day. The theme of the day, attended by more than 260 researchers, practitioners and administrators, was how to increase the involvement of clients and families in the rehabilitation process – a recommendation from Ontario’s first report card for rehabilitation.

Focus on Communication

The advice from all three was straightforward – focus on communication with the patient and family.

“When you’re trying to assess a patient for the first time, that person’s a stranger,” says Patrick. “You know nothing about them, about their home environment, about their work environment, about their community, about their family… families can help fill in some of the blanks for you.”

Leslie points out that after a traumatic injury, everything in a person’s life suddenly changes and stress levels are very high. The individual may be learning “how to survive in a new world with one driver, one income earner, one dog walker, one parent,” she says. “There is no such thing as overcommunicating.”

For Jim, the nature of this communication is also critical. He is a firm believer that professionals must bring not only their skills, but also their humanity to the patient- professional relationship.

“When you’re doing the job you’re doing, it’s so much more than the skills of moving the muscles and knowing the right exercise,” says Jim, “It’s somehow communicating with people… where you become real for them and they become real for you.”

Involve Family Members

The other message the three panel members wanted their audience to hear was the importance of including family members more actively and meaningfully in the planning and delivery of care.

“I began to feel a hell of a lot better (as a caregiver) when I began to feel useful,” says Patrick.

He notes that rehab providers are already doing a good job of consulting and working with clients and families. However, he points out that in many acute settings there is no mechanism to help families find a role and useful ways of contributing. He suggests that acute care hospitals can learn from rehab hospitals in this regard.

Leslie, Jim and Patrick are doing their part to advocate for these changes. Leslie is working with several brain injury organizations to raise public awareness of the challenges experienced by acquired brain injury patients. Jim and Patrick are meeting with staff at Toronto-area hospitals to help them find ways to integrate families into the care plan. Patrick, who is a journalist, is also writing a book on the subject.

“If every practitioner leaves this room committed to recruiting at least one family member or friend for every patient, that’s a start,” he told the conference. “If you begin treating family members not as intrusive . . . but as genuine, effective, potential contributors to a constructive rehab plan then you’ll gain.”

The GTA Rehab Network is working with its 42-member organizations to create an integrated rehabilitation system that provides quality services to patients and their families.