In what ways do occupational therapists educate family members after a spinal cord injury?

As an OT, I’m working with patients family members and we’re working on training, we go from how are you going to help dress your loved one, do the transfer to the bathroom equipment, bathing, education on how are you going to safely bathe someone. Maybe they can’t tell the difference with the water temperature and you’ve got to make sure you watch something like that, so you don’t end up with burns. General education about the spinal cord injury and how that affects their participation with self-care.

Making sure that the family is comfortable with the new cares and feels competent in what they’re doing with the patient is one of my utmost priorities when I'm working with somebody. Sometimes family members at first are a little taken aback saying, “Are you sure I can do this?” “Am I going to be able to do this?” And so my goals are to be there to be able to support them and teach them the skills that they need. So from early on in the rehab process we try to get the family members involved so they understand what their loved one is going through, and ultimately how they’re going to best help them. And I think the hardest thing for family members is sometimes we have family members who want to help too much. And as an occupational therapist, I’m trying to maximize people’s independence, and generally that’s what the patient wants too. They want to do as much as they can for themselves, they’ll say, “I don’t want to be a burden on my family.” And so it’s hard for family members. It’s a delicate balance of giving your loved one the support they need, and also letting them do everything they can for themselves so that they get that feeling of pride and self actualization.

Family members are not medical professionals; they are just as shaken by this injury and trying to learn everything that goes along. So it’s very important for the occupational therapist to be able to teach them how to make the person as independent as possible—how to transfer, how to assist where needed for some of the more critical things that could happen. So, if the person goes into autonomic dysreflexia, what does the family member need to know, what do they need to check and make sure  that it doesn’t progress into an emergency state.

I like to educate families and the person with the spinal cord injury about how they’re going to do what they want to do. So for example, traditionally in rehab we may expect somebody with a spinal cord injury to take an hour in the morning and dress themselves. But the real education and the real art of occupational therapy is saying, “Okay, if you take an hour in the morning and dress yourself, if you can, how much energy are you going to expend , and can you get to work or school in the time that everybody is getting to work or school?” It’s not about being independent, is what I educate: it’s about making those choices and being interdependent, because all of us, whether you’re able-bodied or not, we’re all interdependent on each other. And so I educate families about how to be interdependent, dependent on each other in a very healthy way that promotes everyday living. Not necessarily being independent in a task, such as dressing.