'We can't fix what we don't know'
Kimberley Siu-Chong (centre) is Holland Bloorview’s touchpoint for feedback from families. As client- and family-relations facilitator, she collects input from children, teens and families about what we’re doing well and where we need to improve. “The Patient Declaration of Values is my bible,” Kim says. “It was developed with families and is based on the values of quality of care, partnership, respect and information sharing. When I hear a family’s story, I map their experience through that lens.” BLOOM talked to Kim about her work as a facilitator between families and staff.
BLOOM: How did you get into children’s rehab?
Kimberley Siu-Chong: Can I tell you my meandering path? I did my undergraduate studies in bioethics and criminology. Then I went into law and specialized in social justice because my passion is human rights advocacy.
BLOOM: Why were you interested in human rights?
Kimberley Siu-Chong: Ever since I was young, I’ve had a visceral reaction to unfairness and injustice. When people aren’t treated as people—when an aspect of your social identity results in oppression—that made me really angry, and I wanted to channel that anger into something productive to help others.
I practised law briefly, but I realized it wasn’t for me. The legal system is designed to be adversarial and that isn’t my personality. I’m more conciliatory.
From there I became a legal writer and editor and worked for four years at a legal publication company that specializes in employment and labour law. That job gave me the opportunity to educate people about their rights in the workplace, but it lacked a lot of human interaction.
After that I became a family mediator and did divorce mediation. The families I worked with came to me at a very vulnerable time. I worked to help people identify their shared interests and come to an agreement, often in emotionally charged situations. It was very rewarding work, but I didn’t feel like I was doing direct child advocacy and I missed that piece. It was children that I was interested in, and working with families.
My passions are education, mediation, advocacy, writing and policy. I wanted to find a job that combined all of those. I never thought I would end up in a hospital!
Through my research, I heard about how hospitals have ombudspersons. Then I saw a posting for Holland Bloorview. My sister is a nurse and she did a rotation on our brain injury unit, so I’d always known about the hospital. The ad said Holland Bloorview was looking for people with a masters in health care. I didn’t have that, but when I looked at the description, I knew I had transferable skills and my heart and passions aligned with the work. I knew I had something to contribute and I had to throw my hat in the ring.
BLOOM: What is a typical day like for you?
Kimberley Siu-Chong: My role is to listen and collect all types of feedback. I have an open-door policy, so anyone and anything can walk through my door. It could be a consult with a staff member who says ‘I’m experiencing a relationship challenge with a family, can we talk about it?’ Or perhaps a manager says ‘We have this family meeting coming up, and we imagine there may be some contentious issues. Could you facilitate it?’ Sometimes a clinician brings a family down to see me. Or a family may knock on the door and say ‘I have a concern.’
In addition, I lead conflict-resolution training for individual staff and teams. It’s been incorporated into the core competency education program for all of our inpatient nurses.
I also manage Spotlight Awards from clients and families, so I may receive a heartfelt letter recognizing a therapist or nurse. My role is neat because I get to read every single compliment that comes through this hospital.
BLOOM: When feedback is positive, what kinds of things do you hear?
Kimberley Siu-Chong: There’s such a range. One client submitted a card saying ‘I want to recognize my primary care nurse because she’s like a mother to me.’ A Youth at Work participant wrote that their supervisor ‘made me know me more as a person and learn more about myself.’ There are comments like ‘They listen and care about what matters to me, and they give me a voice.’ Or ‘I was going through the most devastating experience, and the team was there for me.’
Sometimes people think Spotlights are just for frontline clinical staff. But one of our most nominated staff members is Berthe Nabico, who cleans the accommodation suites where many inpatient families stay. They’re often here for a long time and she builds relationships with them. One family wrote a long, heartfelt letter about Berthe and said ‘She taught us how to hope.’
BLOOM:If staff only knew the power they have to help families feel heard and valued.
Kimberley Siu-Chong: We each have that opportunity, across teams and at different levels, to change and affect people’s experience with every interaction—in both positive and negative ways.
BLOOM: I know you track and trend complaints.
Kimberley Siu-Chong: People view a complaint as a negative thing, but it’s not. I can hear from families who love this place, but they have one area of concern. We can’t fix what we don’t know, so this is an opportunity to partner and improve. We need to create an environment where feedback is welcome.
BLOOM: I guess if you weren’t getting complaints, it wouldn’t necessarily be a good thing.
Kimberley Siu-Chong: No, if complaints are low, that’s a flag to me that maybe parents are scared to come forward, or feel the process is futile, or don’t know that it exists. The families who come forward believe that their voice matters, that we care, and that their concerns are going to translate into change.
Our families and kids have a lot on their plate, so when they say ‘I want to share my story,’ I’m so honoured by that. These are very personal stories, very emotional stories.
BLOOM: Do we tend to get common complaints?
Kimberley Siu-Chong: Communication is generally number one, here and for hospitals across Ontario.
A family may say ‘I had questions that weren’t answered,’ or ‘the information shared with me wasn’t clear,’ or ‘I didn’t hear back from someone.’ We publish our data online in an annual report because we want to be accountable and transparent.
The number one area which comes up when I meet with staff is also communication. I may hear that a parent is yelling or swearing or extremely hostile, and staff find it very hard to work together and share information. Partnership means using language and strategies that are respectful and self-respecting.
BLOOM: Do you ever get frustrated by how long it may take us to change something based on feedback?
Kimberley Siu-Chong: Sometimes change takes time. If I’m a cynical person, I don’t belong in this world, which is always about hope. Do I get impatient? Sure.
BLOOM: I guess the word ‘complaint’ isn’t the right word, because it has such a bad rap.
Kimberley Siu-Chong: How you name things does affect how you see them. Every complaint is an opportunity, and that’s not just ‘wordsmithing’ it. It’s an opportunity to partner with families and improve.
BLOOM: Based on your experience with families, what kind of things do our frontline staff need to keep top of mind?
Kimberley Siu-Chong: That every family and every child is an individual. Even though you may have worked with tons of clients with a similar condition, each family is different. Each family has their own values, experiences and journey. We need to view each person as a blank slate and not make presumptions. We need to be willing to listen to what’s important to them by asking open, neutral, exploratory questions.
BLOOM: What do you mean by open questions?
Kimberley Siu-Chong: With closed questions, you’re directing the conversation. So you might say ‘Is it really important for you that your child walks?’ That’s a value-laden, closed question. An open-ended question would be: ‘What’s really important to you?’ Open-ended questions take more time, and are not as efficient.
BLOOM: I guess time constraints make those conversations challenging.
Kimberley Siu-Chong: Yes, I hear that challenge all the time. I know staff have appointments and schedules and workloads, and I don’t want to minimize how challenging it is. But if you don’t take the time to really get to know the client and family, and their values, the care can go down a path that’s not right for the family, and then it has to be undone and you have to backtrack. If you take the time in the first place to really understand where a family is coming from, and establish open communication, in the long term it results in better care and is time-efficient.
BLOOM: Are you ever called to provide support during a disagreement between a family and staff, or is it usually after an incident that you hear about it?
Kimberley Siu-Chong: I can be asked to assist at any stage. But the family has to feel comfortable with including me. I’m a facilitator, so I’m not an advocate for the family or for staff. I picture myself as an advocate for the Patient Declaration of Values. When I hear feedback, I map it against the declaration and identify gaps.
BLOOM: It’s interesting, because I remember when the declaration of patient values was developed many years ago. At the time, people talked about it a lot, but I don’t think I’ve heard it referred to in several years.
Kimberley Siu-Chong: The behaviours we teach in our training for client- and family-centred care in new staff orientation are based on the values in the patient declaration: respect, information sharing, quality of care and partnership.
BLOOM: I guess we tend to refer more to family-centred care now, when we think about those principles.
Kimberley Siu-Chong: Client- and family-centred care at Holland Bloorview is informed by that document. It’s my bible, my analytical framework and the lens through which I see a family story.
BLOOM: What do you love about your job?
Kimberley Siu-Chong: I have an avalanche of thoughts right now. I love the partnerships with frontline staff and managers and clients and families. I love hearing about the rich journeys that families are on. I think I’m uniquely positioned to hear those stories from a 360-degree perspective. This is such a place of hope, I find. When I hear about what our kids and families have been through, it’s a testament to the resiliency of the human spirit, and I get so uplifted. And when I hear about why staff are here, and how their hearts are so much in this work, it’s so moving and soul-stirring.
When I see a complaint translate into change, I get really inspired. Often times, a family or child comes to me because they’re in a place of disappointment, hurt, anger or sadness about some aspect of their experience.
The thing about pediatric rehab is that our kids and families are with us for a long time, so they’re invested in us improving. Advocating for themselves and others, to make this place better, is a beautiful thing. When it’s appropriate, and the family has an interest, I can channel them into our family leadership program. Quite a few of our family leaders came from our complaints process.
BLOOM: What’s most challenging about your work?
Kimberley Siu-Chong: I hear all of these stories and I’m deeply moved by them. You’re a sponge and you absorb all of these emotions, and it can be challenging in that respect. That takes a lot of energy, and you want to avoid being burned out so that you can be fresh for every single family.
BLOOM: Do you do anything to help you cope with the emotional side?
Kimberley Siu-Chong: I try my best to manage my time. I have drop-ins, and I can’t control that. But if I know there are two emotionally-charged situations I’m dealing with, I try not to put them back to back. I want to be fresh for the next family.
I do try to share my experiences and what I’m feeling with our team. I may say ‘I had a really challenging situation this morning’ and they’re very supportive in listening. I’ll take a deep breath to clear my head, or I may go for a quick Spiral Garden walk to help re-centre. More recently I’ve been exploring mindfulness meditation. You have to take care of yourself to have energy to help others.
Another thing that helps is that I don’t only deal with concerns. We get way more Spotlights than we get complaints, so that balances things. I don’t just talk to people when they’re frustrated.
BLOOM: What strategies work best when you’re meeting with a family that is upset about care?
Kimberley Siu-Chong: My approach is always the same. When they first come in, I apologize for their experience. They’re coming to me because they’re concerned, or scared, or sad, or angry. If you have reason to be in a pediatric hospital, there’s a lot going on in your life, and if you say we’ve done something to add to that stress, that’s very regrettable. Apologizing sets the tone for rebuilding the relationship.
The second thing I do is thank them for coming forward and for trusting me with their story. I thank them for having confidence that even though we’ve disappointed them, we’ll make the effort to make things right. Then I ask them to tell me what happened and I give them space to share their story.
Silence is a very helpful tool. I’m listening to understand where they’re coming from and what’s important to them and what they’ve experienced. They’re helping me to understand so that I can, in turn, help them. I listen and take notes. Once they’ve shared their story, I ask them about their goals or hopes from this process.
BLOOM: If you could change one thing about health care, what would it be?
Kimberley Siu-Chong: We’ve talked a lot about having the time to really get to know each client and family—about what’s important to them, their values, hopes and dreams.
If I had a magic wand, I wish we all had more time to have those important conversations, and that there would be no competing priorities that can create tension. I wish we had more time to build those connections so that we can see each person as an individual.
I’ve met so many young people who have experienced discrimination based on their disability, and who want to channel that anger into change. Sometimes they’ll tell me about a concern here, but then they’ll share about what it’s like in the broader context of their life.
BLOOM: Do you mean how they’ve been devalued in the community?
Kimberley Siu-Chong: Yes. They’ll say this thing happened here, but my whole life I’ve been bullied. Then I get to understand that a particular incident here that seems small—if you understand it in the context of their life—is really huge.
BLOOM: It sounds like something we discovered with our narrative nursing group. It was the idea of the back story—that every family has a unique and painful back story before they even come here, and by being aware of that, it can help us be more compassionate and flexible and non-judgmental.
Kimberley Siu-Chong: Yes, it is the back story. If we don’t understand a family’s context and journey, we just cross paths with each other. But if I have the time to dig behind the anger, often a complaint that is about one thing isn’t really about that at all. It’s about something else that’s motivating the anger.
BLOOM: I think it can be cumulative, too. So maybe a parent has felt devalued or traumatized in their care or in the community before coming here. And these feelings of disempowerment grow, but they don’t express them.
Kimberley Siu-Chong: And then an incident is the straw that broke the camel’s back.
BLOOM: Exactly. But if you’re only looking at the incident in front of you, their reaction doesn’t make sense.
Kimberley Siu-Chong: Often times if I have the time to dig and unpack, I find that a complaint about one thing is really about a number of incidents in their lives that have hurt them to their heart.
BLOOM: What have you learned from the families you work with?
Kimberley Siu-Chong: So many things. I consider myself new to health care, because I don’t have a clinical background. I rely on families to teach me about their health care experiences from their perspective. Because they provide the primary care for their child, families become medical experts, and they explain the medical jargon to me when I don’t understand it. They’re very generous and patient with me.
I think the power of empathy is what I’ve learned. That’s always been important to me, but I get reminded of it, and how it plays out in health care, every day.
Our strengths-based approach made sense to me before I came here. But now I see it in the context of how we talk about disability in common discourse, where people just talk about what you can’t do. I’ve learned to see a world of possibility and hope in action with every client and family.
Do you have concerns or kudos about your care at Holland Bloorview? Call Kim at 416-753-6084 or e-mail feedback@hollandbloorview.ca.
