Friday, February 24, 2017

Moving from bedside to clinic broadens a nurse's perspective

By Louise Kinross

Nancy Campbell (left) has worked as a registered practical nurse at Holland Bloorview for 15 years. She was hired straight out of nursing school, and worked the first 12 years with children on our complex continuing care (CCC) unit. She then moved to outpatient services to work in our hypertonia, spina bifida and Rett syndrome clinics. Rohan Mahabir suggested Nancy for our candid interviews on what it means to work in children’s rehab.

BLOOM: How did you get into nursing here?

Nancy Campbell: I love children. And this is where I landed after nursing school. I was very interested in pediatric nursing and when I had the opportunity to come and interview and was offered a position, I came and I never left.

BLOOM: What does a day look like for you?

Nancy Campbell: Most of my time is spent in our hypertonia clinic, working with children who have increased muscle tone. They may have stiff muscles or uncontrolled movements that make it difficult to walk or sit comfortably in chairs.

We do a nursing assessment where we ask about their general health and their reactions to any tone medications or interventions, to see if what we’ve recommended is working. Laurie Liscumb (photo right), who is the other nurse, and I are the point people for organizing follow-up appointments, funding or casting and providing education about interventions and medications.

BLOOM: What’s the greatest challenge?

Nancy Campbell: When we see children in pain. Working within this system means that there’s often a wait to fix that. For example, there will be a wait for a child to get an appointment for Botox injections at SickKids.

BLOOM: So it’s the moral dilemma of seeing pain and not being able to relieve it?

Nancy Campbell: Exactly. Wishing you could help immediately. We also see the impact that pain has on entire families—on siblings and parents and sleep and relationships.

BLOOM: How do you cope with that?

Nancy Campbell: By talking to my colleagues. And to families. Even if we can’t offer the immediate support of the intervention, I hope speaking about pain and going through the journey together helps.

BLOOM: What do you love about your job?

Nancy Campbell: I love the people. I love the team I work with. They’re super supportive and everybody really does want our clients to have the best life they can have and we’re all working towards that goal. You see it in every decision.

I love the families. Sometimes you look at a situation and think ‘If that was me, I don’t know if I could pull myself out of bed in the morning.’ But these families try their best to keep it all together. They’re resilient.

BLOOM: What have you learned from families?

Nancy Campbell: It’s really important to families that you see them as families, and not just as caregivers to a disabled child. When I moved from working with inpatients to outpatients, I realized that these are all families with their own lives happening elsewhere, and it’s not just clinical. You have to figure out how a clinical assessment will fit into a particular family’s life. Will it work and have meaning for that family, or not?

BLOOM: I didn’t realize you’d worked on CCC. What were the challenges there?

Nancy Campbell: Helping families cope with grief when their child suffers a catastrophic injury is very difficult.

BLOOM: How do you support those families?

Nancy Campbell: By trying to read the situation, to know whether a parent was ready to have a discussion about it, or needed space. I always tried to make my interaction with the child positive, so I could role model that you could still have a positive relationship with this beautiful little child.

BLOOM: What did you love about working on CCC?

Nancy Campbell: Developing long-term relationships with families. It was developing that trusting relationship where families felt safe having you with their child—and especially when they couldn’t be there.

BLOOM: How did you make the decision to move to outpatient nursing?

Nancy Campbell: I love bedside nursing, so I was hesitant when the opportunity came up. But I was looking for a new challenge with my career and new learning opportunities. I do miss the hands-on work with inpatient clients. In outpatients, you’re doing more interview-type assessments. You’re not helping someone have a shower.

BLOOM: What did you learn in your new role?

Nancy Campbell: I had worked with a lot of children with cerebral palsy on the unit, but moving into outpatient work expanded my knowledge about treatment options.

It’s too bad we don’t have a better meshing between inpatients and outpatients, because what we could learn from each other would definitely improve care on the units.

BLOOM: Do you mean in terms of treatments or your attitude to nursing?

Nancy Campbell:
Both. If I went back to inpatients now from a more therapy-focused second floor, I would change the way I nurse. Knowing that these families go home and have their own lives would encourage me to empower the families more.

Sometimes I think we felt on CCC we were helping families by taking over the care of the child, because we knew the parents were stressed and tired. But in some ways, that’s disempowering, because maybe they felt they couldn’t do it as well, or we didn’t trust them to do it, or that we were watching and they felt judged.

I’ve learned a lot by seeing families take care of their kids at home. If I was on CCC now, I would help more by doing less. I would let the families figure things out with support. I’d encourage parents to really be in charge of care and encourage the kids to do as much as they can for themselves. I wouldn’t be so worried about time constraints.

BLOOM: What kind of constraints?

Nancy Campbell: Like a child needs to learn to brush his teeth, but the school bus is leaving, so you do it quickly for him.

BLOOM: Anything else?

Nancy Campbell:
There are so many opportunities to share knowledge between inpatients and outpatients. So if I have a child with spina bifida on the unit and I know there’s an expert in spina bifida downstairs, I should reach out. Too often we work in isolation on the units. We need to remember to engage with the rest of the services in the hospital.

BLOOM: What do you think prevents that?

Nancy Campbell: It’s not knowing what we don’t know, and not fully understanding the depth of knowledge that our colleagues possess.

BLOOM: What advice would you give a nurse just starting out at Holland Bloorview?

Nancy Campbell: To be open-minded and creative and to let families help drive the decisions you make. To figure out what the family’s vision of their child is, and help them get there, rather than putting your vision of what 'should' be onto the child.

BLOOM: I guess that involves a lot of listening.

Nancy Campbell:
Yes. And it’s not about performing tasks, it’s about quality of life. If you perform a task but the child is no happier or healthier at the end, then the task isn’t of any value.

Wednesday, February 22, 2017

'He's a pretty normal dad'

By Louise Kinross

“When I was seven, I asked when I was going to get my chair,” says Elijah Wangeman, 14 (above left), in an unedited version of My Dad Matthew. The six-minute film is about Elijah’s life with his dad Matthew (right), who has cerebral palsy, uses a wheelchair and communicates by moving a pointer on his helmet to letters on a board. For Elijah, Matthew is “a pretty normal dad.” So as a child, Elijah says he imagined that he too would use a wheelchair when he got older. Matthew is a professor in disability studies at Northern Arizona University. That’s where Matthew met filmmaker John Schaffer, when John was studying special education. On Thursday Feb. 23 at 9 p.m. Eastern time, John is live streaming the world premiere of his film My Dad Matthew on Facebook. John says he hopes viewers take away “a new perspective on disability.” BLOOM interviewed Matthew by e-mail.

BLOOM: What do you teach at Northern Arizona University and why?

Matthew Wangeman: I teach disability studies and I absolutely love it! My job is to essentially challenge how my students think about disability. In fact, we developed the disability studies minor about 10 years ago to combat what people with disabilities and their family members said was the greatest barrier they faced in Arizona—the attitudes of others towards people with disabilities. I really feel I’m doing my life’s work at Northern Arizona University. What keeps me going is when I hear my students talk in the senior seminar course that I co-teach—it’s like they are completely different people. They really think about disability as a problem with society not being willing to really embrace people who are different. To me, that is how you begin to change society for the better for people with disabilities.

BLOOM: What was the greatest challenge growing up with your disability?

Matthew Wangeman: Probably my greatest challenge was trying to convince my Mom that I really needed to go to college! I somehow knew education would be my only key to even have a chance to have control in my life. I always say I have been extremely fortunate in my life and often I think my path could have gone in so many bad directions. I could, and probably should, write a book about growing up in two residential schools for crippled children.

BLOOM: You seem to have a very open, humorous, joyful outlook on life. Do you have a philosophy that shapes the way you live?

Matthew Wangeman: Yes, I love to laugh and I love to make people laugh. I often say I’m a ‘sit-down’ comic. I just think with humour people open up more and they’re open to understand and really think differently about a subject. Life is way too short to live life too seriously and people just like being around funny and happy people.

BLOOM: You say attitudes can be most ‘disabling.’ Can you give us an example?

Matthew Wangeman: I have never had a job that pays me for what I am truly worth. I really feel that is because of attitudes of others towards me, because I have a significant disability. I went to one of the best universities on this planet and that was UC Berkeley. I even earned a masters of city planning and was in a PhD program at Berkeley that I didn't finish. Even if I had finished my PhD, I don't think it would have made a difference because of people's attitudes towards me as someone with a significant disability who can't orally speak. This will always frustrate me.

BLOOM: You have a significant physical disability but have achieved great success academically. How can we break through stereotypes about people who have an intellectual disability? Even in the disability community, intellectual disability is stigmatized?

Matthew Wangeman: Yes, this a problem and it shows people with disabilities are just as guilty of discrimination against other people with disabilities. We must practise what we preach, but humans are flawed people and in order to feel good about ourselves it seems we must put down other people. I really don't know how we fix it, but we must continue to confront this ugly problem.

BLOOM: I would like to see us change the way we view human value—so we don’t base it on what a person does—but see it as inherent to each person, simply by virtue of being human. Do you think people should have to ‘earn’ their value by being productive in a conventional way?

Matthew Wangeman:
I happen to think the value that we place on people as part of a capitalistic society is probably one of the most harmful things we do to people with significant disabilities. People should never be judged by how much money they make, because it's so arbitrary. I love sports but it's ridiculous that someone would make $5-10 million dollars for hitting this round ball with a bat 400 feet! It makes no sense.

BLOOM: Your son Elijah provides a lovely perspective to the story. How have his insights impacted your thinking?

Matthew Wangeman:
Probably what my son has taught me the most is disability to him is typical. I am not saying that he is free from discriminating against people, because we all discriminate, but I do think he is much more open to other people who are different and in that way we can learn from him.

BLOOM: What advice would you give to parents whose child has significant disabilities?

Matthew Wangeman:
Just believe in your child and always question everything!

Wednesday, February 15, 2017

Dress rehearsal

By Louise Kinross

My son is taking part in an interactive play called What Dream It Was at the Miles Nadal Jewish Community Centre this weekend. He is the flying jokester (above), one of the creatures in a magical forest inspired by Shakespeare's A Midsummer Night's Dream. He will be part of a shadow performance and lantern parade, assist at the potion-making station and sneak around to stick messages on people's backs (the jokester part). 

This is a fabulous arts program that was provided free to participants aged 18 to 30.

It's a partnership between the Ahuri Theatre, the Bottom's Dream Collective and Miles Nadal JCC. 

Thursday, February 2, 2017

With mind-reading device, 'locked-in' people say they're happy

By Louise Kinross

Patients with no control over their bodies were able to answer questions with a brain-computer interface that learned to read their mental “yes” or “no” in a groundbreaking study published in PLOS Biology on January 31.

The four paralyzed patients with amyotrophic lateral sclerosis (ALS), who are described as being "locked-in," learned to answer personal questions like “You were born in Berlin” and open-ended questions like “Are you happy?” by thinking “yes” or “no.”

The scientists were able to detect distinct changes in blood oxygen levels that corresponded with each person’s “yes” and “no” response using near-infrared spectroscopy. The device, which sits on the person’s head like a swim cap, emits near infrared light into the brain and records returned light, tracking changes in blood flow that relate to brain activity.

Patients completed between 20 and 46 sessions over many weeks with an accuracy of above 70 per cent with questions with known answers, like “Your husband’s name is Joachim.” Over time the system gets better at reading each person’s brain signals.

In what was reported in news stories as a surprise, three answered “yes” to “I love to live” and “Are you happy?” The fourth patient wasn’t asked these open-ended questions because her parents said her emotional state was fragile.

Lead investigator Niels Birbaumer, a neuroscientist at the Wyss Center for Bio and Neuroengineering in Geneva, said the patients and their families were “excited” to communicate after as many as four years of silence, and to know that their loved ones wished to remain alive on ventilators.

In an email interview, BLOOM asked Dr. Birbaumer if the results suggest that assumptions that non-disabled people make about life with severe disability being “not worth living” were wrong.

“Yes,” he wrote back. “They are utterly wrong. Many papers prove this.”

He said the findings indicate that people are much more able to adapt to disability than we expect.

In the paper, the scientists wrote that the three patients who were asked questions about quality of life, like "Are you happy?," repeatedly responded "yes, indicating a positive attitude towards the present situation and towards life in general."

The patients all lived with their families at home.

Photo by the Wyss Center

'Passport' helps parents plan move from hospital to home

By Louise Kinross

A parent who spent 16 months at her daughter’s bedside at Holland Bloorview has given a gift to other parents of inpatients.

The Transition Passport is a binder that helps parents organize their child’s health information and plan for the extensive equipment and supports they may need to move back home.

The idea came from Sadia Qureshi, whose daughter Zoya had been a healthy six-year-old until she woke one morning seizing. After two months in acute-care, where she continued to seize and was intubated, she came to Holland Bloorview.

“We had no idea where we would go from here, that there would be life after Holland Bloorview,” Sadia says.

The passport organizes what parents need into sections: checklists of equipment and medication; funding sources and school planning; a place to record important dates, keep therapy schedules and take team meeting notes; and a holder for business cards for key staff who work with your child.

“As a parent who had never been through this, I didn’t know what equipment we would need at home, or even that funding was available,” Sadia says. “I didn’t know that schooling for Zoya would be a choice. I didn’t know it was possible to live in your home with support. The passport has checklists you can go through with your physiotherapist or nurse or social worker to help you plan according to your child’s needs.”

The process of moving home with Zoya was “very difficult, long and not easy,” Sadia says. She often didn’t realize that she needed certain things until she took Zoya home for short trial stays. “It’s hard to know what to expect. The passport will help parents pre-plan, so it won’t be as stressful or take as long.”

Sadia worked with a discharge steering committee at Holland Bloorview to bring the binder to life.

“Being part of this group was a wonderful experience,” she says. “I shared everything—what was great about our transition experience, what we need to work on, and what I think will be most appropriate for parents.”

Anna Marie Batelaan, social worker on the brain injury rehab team, says families “are finding it extremely useful as a way to keep organized and keep all of their documents from acute care and here in one place. For a lot of them the health care system is new and foreign. Many families come in with a shopping bag full of reports and they have trouble laying their fingers on what they want to show you. This binder gives them a framework for keeping it all in one place. They keep reports, home programs and medication lists in there. It’s one location where you can put everything. I have families who have moved home who continue to use it as outpatients, so they don’t have to keep track of everything in their own head.”

The Transition Passport team received the Sheila Jarvis Impact on Client and Family Centred Care Award for 2016. You can download your own copy or ask your social worker for one.

“Our goal is that this will assist families in partnership with their clinical team—not just with organizing information, but with helping them prepare for meetings and ask the questions that are important to them,” says Elaine Widgett, interim senior director of inpatient rehabilitation.