I sat at a table with another veteran parent and half-a-dozen professionals and we shared personal stories about health-care interactions where communication broke down.
By looking at some of these challenges, we hoped to come up with ideas for how to share medical information in a timely, clear, non-judgmental way that was useful to the parent given their unique story.
Mona Lee, an occupational therapist at Holland Bloorview, talked about how difficult it was to tell the parents of a young child that they needed to consider a wheelchair for the child when the parents still hoped the child would walk.
It was easy for me to imagine this scenario because when my son was young there were times when I refused to let go of a dream I had for him, even when presented with evidence that it was unlikely.
What I hadn’t really thought about was how it would feel to be the professional in that interaction. Thanks Mona! Louise
When we can't take the pain away
By Mona Lee
I work with children in our integrated education and therapy program in the Bloorview School. The program integrates therapy and self-advocacy into kindergarten and Grade 1 to ready the children to be successfully included in their neighbourhood school in Grade 2.
When students come in junior kindergarten, their parents typically have big hopes that daily therapy will boost their child’s mobility. If the child has been in private therapy, the parents have often been given the idea that their child will eventually walk without assistance.
What parents often don’t understand is the degree of independence a child needs to participate in a regular school class: to walk long distances, including outdoors or on a field trip, and if using a walker, to be able to move on their own and safely, without the assistance of a therapist.
By the end of JK here there are some children who haven’t made the functional gains that would suggest they’ll have this mobility. Their parents need to consider getting the child a wheelchair. We like to plan this so that the child has the whole of Grade 1 to “work out the bumps and glitches” and get comfortable using the device they’ll use in the community school.
We know that when students move to their local school the amount of support they get plummets.
Suggesting to parents that they consider a referral to seating for a wheelchair is the most challenging talk I have with parents.
Some parents have strong spiritual or cultural beliefs that support their hope that their child will walk. These parents may do yearly journeys back to their home country, pray and engage in other spiritual activities to keep this hope alive.
They may not hold Western values about the importance of independence. In fact, they may not realize that full independence is an expectation in our neighbourhood schools. In their culture people with disabilities may not be seen publicly, so it may be hard for them to picture their child using a wheelchair in the community.
In other cases, parents may be convinced that with just a bit more practice their child will be able to build the endurance needed to manage at the community school.
Whatever the case, I always feel anxious and almost afraid to bring up the topic of wheelchairs. Part of what we learn in school is that we’re there to encourage hope, not take it away. We’re there to support and provide what the client and family needs to keep moving forward and feeling empowered and enabled.
But sometimes I feel that I’m imposing our Western values on families. This is Canada, and here a child isn’t supposed to have a caregiver with them 24/7. If they can’t get around independently, we give them a mobility aid. But maybe the family is from a culture where there is greater interdependence. Maybe that’s their only reference point.
As a professional, it’s part of my job to explain to the family the parameters the child needs to function within in a regular school, and to explain what the reality will be in terms of the lack of supports.
As human beings we relate when we can share personal stories and be vulnerable to each other, but as a clinician I’m regulated by a college with very specific guidelines. I have to maintain a professional stance and use objective wording and that part I find hard.
Some parents are able to hear what I say, and acknowledge that we’ve tried many things over the year but their child’s present function isn’t where it needs to be.
Parents may be quite tearful and emotional, but say they knew this talk was coming.
Other parents say they’re not ready to consider a referral to seating. Some will take the referral but not attend the appointment.
Sometimes parents are at different places of acceptance and need time to come to agreement.
Sometimes we need to wait and then come back and reassess the parents’ readiness. Sometimes as the child grows larger, the parents recognize the physical reality of the situation: They can’t as easily just scoop their child up to move them.
Some children may be vocal about wanting to try a wheelchair.
I think the most important thing is that I accept what I think the parents are feeling when we have this conversation. I need to work with that, and not go in there thinking I have the magic-bullet solution, because I don’t. It’s that touch of humility. I know I can’t take the pain or struggle the parents are experiencing away.
I think this is a place where families and professionals can meet. It’s a place where we both have that mutual understanding that there isn’t a quick fix.
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