'You are the expert on your child'

I met a remarkable woman six years ago. Her name was Ann Hovey (centre) and she was living at Holland Bloorview while her daughter Cailyn, 3 (in photo left, now 9), underwent inpatient rehab following removal of a brain tumour. And if that wasn't demanding enough, Ann, a single parent, had her baby Lauryn (right, now 6) with her. A few months ago I was delighted to see Ann again at Holland Bloorview. She was speaking to staff about the critical role of parents on the health-care team. Ann is the focus of our Trailblazer column in the December issue of BLOOM. She has much to teach us about courage. Thank you Ann! Louise

'You are the expert on your child'

Ann Hovey’s daughter Cailyn was diagnosed with a brain-stem tumour just before her third birthday in 2004 and shortly after her sister Lauryn was born. Six weeks after her diagnosis, Cailyn was given 10 months to live. Ann, a single parent, has seen Cailyn through four brain surgeries since then – including one in New York – two years of weekly chemotherapy, two eye surgeries and almost a thousand hours of therapy. Six years later, Cailyn is still alive and her tumour has been stable for two years. Ann, an engineer who coached business teams to improve quality, has become an advocate for parents of children with serious illnesses and disabilities. She speaks at conferences and is writing a handbook on how health-care workers can partner with parents to ensure the best outcomes. “Professionals are the gatekeepers. They’re the ones who can make it possible – or not – for parents to step up and be the strong advocates we desire to be.”

BLOOM: Why is the parent voice critical to the health-care team?

Ann Hovey: No one knows your child better than you do in terms of behaviour, typical reactions and personality. So in terms of facilitating how well things work through an intervention, or getting a child to do therapy, or understanding why a child is behaving a certain way, parents have a huge impact. For complex cases, the parent is the only one who is at all the appointments and can provide the most complete information, which leads to a more accurate diagnosis or approach to intervention. Cailyn has worked with as many as 15 specialists and I’m the only one who sees them all.

BLOOM: What are challenges to parents being heard?

Ann Hovey: One of the biggest challenges is the historical relationship we have with medical doctors. We have a history of deferring to doctors because usually we’re in a place of vulnerability when we approach them. Our child is ill and we can’t provide the answer. We don’t go in saying: “I’m expert 1 and you’re expert 2 and together we’ll resolve this.” We go in saying “I need your help.” They hold the key and we feel we hold nothing. When you’re in the business world, you learn very quickly that teams are a way of life and that to solve a problem or improve a process you’re going to be working with others. But for the most part, medical specialists don’t approach work as a group. So when a parent says “I’m your partner, you need to listen to me” they’re thinking “What?”

BLOOM: What can professionals do to enable parents to be vital partners?

Ann Hovey: Listening opens the door for a partnership to begin. When a professional sits with you, and is not anxious to leave the room and is actively listening to your thoughts, concerns or suggestions, she is saying “What you have to say adds value.” It’s important. On the other hand, when you deal with a professional who has his hand on the door handle saying “Anything else? Anything else?” you get flustered and anxious, and you can’t think or communicate as clearly. As a parent on this journey, we know we can’t do things that will save our child’s life, or help them see again, or whatever it is, and that leads to a sense of helplessness and a loss of confidence. Professionals can teach us what we need to do or what we can do to help our children. They can support our choices for our children when they’re reasonable. They can build our confidence by saying: “Hey, that’s a great observation” or “You’re doing a great job.” When parents feel they’re doing good things they also feel more in control and are more likely to contribute positively. And underlying all of this is a structure of hope. When you don’t squash a parent’s natural hope, then the rest becomes possible. If I have no hope, I won’t push through the care plans and the therapy, because I have no hope it will make a difference.

BLOOM: What qualities enable a parent to be an effective partner?

Ann Hovey: Some professionals think our ability to contribute as a partner depends on our education and personality. In my experience working with organizational teams to achieve successful outcomes, I found that the people who contributed greatest weren’t necessarily the most educated or easiest to get along with. But they had these qualities: they understood their responsibility to step up to the challenge; they believed they had something to contribute; they showed respect for team members; and they believed in the goals of the team. Health-care providers can help us strengthen each of these qualities.

BLOOM: How did you maintain a hopeful attitude when Cailyn was given such a dire prognosis?

Ann Hovey: I have a competitive personality and when I heard there was no point to surgery because it would just ruin the last 10 months of her life I said: “I can’t sign up for that!” But there were a number of practical things I did. I created a list of all of the things I could do to help my child: ‘I can hold her, I can tell her I love her, I can make sure she does her therapy.’ I got Cailyn to visualize her tumour as a cookie that we were going to eat. It was painfully obvious the things I couldn’t do for her, so I needed to focus on what I could do. I also made a list of all of the things I was thankful for. It’s too easy to get caught up in the heavy stuff as opposed to something you’re thankful for. I believe that a certain amount of energy is created when you think positively, and energy is also created when you think negatively. We don’t know the impact of negative energy, but we do know that if you hang around with someone who’s very positive, you tend to feel better.

BLOOM: What other strategies for remaining hopeful would you recommend?

Ann Hovey: In addition to writing a list of what you can do, and what your blessings are, focus on getting through one day successfully. Ask yourself: ‘What can I do to make sure today is successful? What has to happen so I can get to the end of the day thinking it was a good day?’ Maybe it was just that I was going to take Cailyn out for a walk. The truth is that no one knows the future and generally speaking when you’re on this kind of journey you won’t get a hugely positive sense of the future if you talk to medical professionals. I think they feel they need to be conservative. So focus just on one day. Another important thing is to ask professionals to prioritize the most critical support or therapeutic strategies. I remember having 25 different exercises I could do with Cailyn and I could barely get through two. So ask: ‘What are the three most important exercises based on my child’s biggest current weakness?’ That gives us parents a sense of control because we know we’re doing what’s most important.

BLOOM: Do you have other suggestions for how parents can best work with health professionals?

Ann Hovey: For optimum results, we need to make lists of our questions, thoughts and concerns, to ensure they’re covered. When our questions aren’t answered, we feel helpless. So bring a list and if the doctor is in a hurry, say: “I appreciate your time and I understand you’re busy, but I have a list of questions I will go through as quickly as possible.” Make sure you record the observations and recommendations of each specialist because you have to bring them forward to other health-care professionals. Parents also need to trust their instincts. My approach is to listen openly, seek answers, access other opinions, but when the rubber hits the road, I go with my gut. When a doctor says “Do this,” I know whether or not I feel good about it. If I don’t, then it’s not the right thing to do. Seek out professionals who are prepared to listen and view your observations as valid. Believe that your contribution is critical because you are the most committed team member and you’re the expert on your child.