When a child has 24-7 needs, mothers bear the costs

An early photo of two of Sheila Jennings' children

By Louise Kinross

As the mom of a son who had severe asthma and a life-threatening immune condition, Sheila Jennings learned firsthand that it was impossible to work outside the home and tend to her child with complex health needs.

“My interest in the support rights of mothers of severely disabled children began after I got divorced and set up my law practice while caring for three children,” she says. “My son missed about 40 days of school in Grade 7, and a similar amount in Grade 8. He had severe infections, was followed by four clinics, and was frequently in the Emergency Room. One time I was just about to go into the courtroom, and I had a call that something was wrong at school. I called my son’s father, who is an emergency room physician, to ask if he could find out what was going on, and he said: ‘I have someone here with a screwdriver in their head.’ Even when I had a spouse, he didn’t necessarily have the ability to drop everything. I started to get sick myself in 2005, and when I became very ill, I had no choice but to close my practice.’”

Sheila recently defended her PhD thesis called The Right To Support: Severely Disabled Children And Their Mothers at Osgoode Hall Law School. “Within complex care, visible and hidden costs have been offloaded onto caregiving mothers by governments,” she writes in the study's abstract. We spoke about her research, and why she believes that the extraordinary demands currently placed on Canadian mothers of children with complex needs might constitute ‘cruel and unusual treatment or punishment’ under section 12 of the Canadian Charter of Rights and Freedoms.

BLOOM: What was the purpose of your research?

Sheila Jennings: I wanted an answer to the question: ‘What are the legal rights to support for mothers who have severely disabled children, and what should they be?’ I thought it would be a very simple question. But it was anything but.

My project looked at literature, as well as 184 cases, which were mostly Canadian. These were cases where caregiving mothers brought law suits or defended against the actions of others. They took on the Canada Revenue Agency or social benefits, or said they needed more spousal support due to their child’s complex needs. I used cases from every jurisdiction and from an online database, so mothers can easily access them in support of their own complaints.

BLOOM: What did you find?

Sheila Jennings: It was fairly uniform that if the moms were single and unable to work, they were falling into poverty and struggling, and they were often opposed in cases they brought. There were sympathetic judges, but caregiving mothers’ support needs slid between categories in law, and often couldn’t be helped in court. There was the occasional win, which might take months or years. Litigating mothers became embattled while also providing care. Lawsuits are exhausting and stressful. And each case was usually just one win—there were hardly any systemic wins, where the court said from now on every mother who needs this support will get this amount.

One of the problems is that child support is considered for the average child. You can ask for add-ons, but the cost of respite care and basic nursing care must typically be fought for.

BLOOM: Can you describe one of the cases?

Sheila Jennings: One public law case was brought by a woman who was divorced and had a six-figure income. She had three children. She came to the Social Benefits Tribunal in Ontario to ask for funding through Assistance for Children with Severe Disabilities (ACSD). ACSD had said no, your income is over the funding cap of $60,000, so you can’t have the amount you say you need. Yet 50 per cent of her income was going to disability-related supports. 

She’s a good example of someone who had a full-time job and a big income, but it still wasn’t enough to make it manageable. The tribunal agreed that she'd made the case for the additional money, but it was on a one-off basis. Three years later, she was back in front of the tribunal when her funding application, over what was, in fact, a discretionary cap, was again refused.

I have so much admiration for these women. They’re living extraordinarily difficult situations with their children, and they’re rolling up their sleeves and taking on the government, or the other parent who doesn’t want to pay. The other parent says it’s the government’s job to pay, and the government says it’s the other parent’s job.

The system for disability supports across Canada is very fractured. It’s not a uniform system, nor can it be easily accessed. The ministries frequently shift people around and change programming. There's rarely an expert in charge with a great deal of knowledge on the file. It’s very hard to get systemic change or sustained change. Much of the work caregiving mothers do is invisible. People can be sympathetic, but they don’t realize how much work is involved and what the implications are. This is a different form of motherhood, and it needs to be supported as such.

BLOOM: I remember when my second child was born without disabilities, being absolutely shocked at how easy her care was.

Sheila Jennings: Yes. Reflecting back on when my third child, who is athletic and healthy, was born, it highlighted for me that the mothers I was studying were different. The support needed for a child who is playing soccer, has tons of friends, doesn’t get sick often and has no physical issues that land them in hospital, is not comparable.

I think professionals who are going to be working with caregiving mothers should be going into the home for two to three days, to see what’s involved. In my project I decided not to call the mothers 'complex-care moms.' I decided to use a feminist lens and use the term 'maternally complex care.' It’s a different form of motherhood.

Too often, people see a regular mom, and they see the complexity as medical- and hospital- and doctor-centred. That is treatment.

It's the mother who is providing the complex care. 

Maternal complexity, rather than medical complexity, gives status recognition to the woman who's doing the care, and Canadian research shows it’s 97 per cent women. Many have given up jobs to care for a child with additional needs. It's an important role in society that carries a price, and it doesn't come with workers' compensation, pay or a pension.

I'm interested in how these women are seen and treated in our culture. They get sympathy and sometimes pity. Or even admiration. But care of this kind is not recognized as the work it is. I’ve said before, going to court as a lawyer on a difficult file was easier, any day, than dealing with the objective and subjective maternal complex-care issues that would arise with my son. 

Caregiving mothers may be traumatized while providing care, and at the same time you’re also running the house and doing everything else women are socially assigned to do.

My research also showed that it's hard for children with complex-care needs to see their mother's exhaustion from the heavy lifting, so to speak. It's an issue for children too.

BLOOM: Did you come up with any recommendations for change?

Sheila Jennings: One recommendation I considered is the treatment of caregiving mothers in light of section 12 of the Charter, which provides that ‘Everyone has the right not to be subjected to cruel and unusual treatment or punishment.’ 

I made preliminary arguments that to have mothers alone held responsible for this care, in the manner it’s currently provided, meets a legal test to show section 12 is violated. 

Mothers’ health is being negatively affected, and not just a little bit. There’s even a study out of Australia about how mothers of complex children have much higher levels of mortality.

BLOOM: There was also a population-based study done by Dr. Eyal Cohen at SickKids that showed an increased risk of early death in mothers of children born with anomalies like heart disease or Down syndrome.

Sheila Jennings: Right. So we know this correlation is an issue. 

BLOOM: What was the typical outcome of the legal cases you analyzed?

Sheila Jennings: Overall, you can see that the mothers are embattled. For example, there was a 2004 mother with a child with progeria, which causes early and rapid onset of aging. She wanted an increase in night nursing hours, and she wanted the government to subsidize, or pay for, private nurses she had to hire when the CCAC nurses didn’t show up. She also didn’t want CCAC to send her personal support workers who didn’t understand her child’s condition.

BLOOM: I looked at the case you sent, and she also wanted registered practical nurses who did overnight shifts to be paid at the registered nurse rate to better retain them. And she wanted a back-up plan with the hospital, so that CCAC-booked shifts wouldn’t be cancelled.

Sheila Jennings: Yes. Unfortunately, she had no legal leg to stand on. The CCAC client was her child, not her. I address this issue as one of relational rights in my project. She lost her claim. It’s 15 years later, and these home-care failures haven’t gone away. We read about the same problems from parents like Marcy White and Samadhi Mora-Severino. We have another generation dealing with the exact same thing.

BLOOM: How could section 12 be used to create change?

Sheila Jennings: Lawyers and mothers doing this kind of care need to get together to list the harms they’ve experienced, and to consider what kind of legal action is possible.

For example, it’s not okay to be on call 24 hours a day, nor to have consistently interrupted sleep for years. This is way outside the gamut of modern day labour standards. A mother interviewed recently by a Montreal newspaper said ‘What kind of world do we live in, where I’m supposed to be up, day and night, providing heavy physical care?’ There isn't a union or workers' compensation to protect these women when they're injured or become ill. Caregiving mothers bear the risks. That's monstrous, and as a society we can do better.

BLOOM: You mentioned that you looked at how our culture views mothers of children with disabilities.

Sheila Jennings: Yes, I did, and it's very interesting. The special-needs mother is romanticized, and put on a pedestal, and is portrayed as having a high cultural value. You think of Princess Diana in Pakistan holding a dying child, or Princess Kate landing on the runway in Alberta, and hugging a child who had obviously been in cancer treatment.

But that runs contrary to the way that caregiving mothers, particularly those who provide maternally complex care, are treated at a provincial level. The reality is that they’re often isolated and alone. Donna Thomson’s book The Four Walls of My Freedom alluded to that. There is exclusion, not only of severely disabled children, but of their mothers too.

BLOOM: What are your next steps?

Sheila Jennings: I hope to teach again this year. I taught last year at the Ontario Tech University, and I was able to bring these issues up in my family law course and also, to a degree, in my human rights course. Students were very interested. I'm also in the midst of writing two papers and preparing a proposal for a book with an academic press.

In addition to her years practising family and child welfare law, and doing her PhD, Sheila Jennings did an MA in critical disability studies. You can follow her on Twitter @SheilaKJennings.

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'I'd like to see siblings treated more like patients'

By Louise Kinross

Victoria Rombos has worked in Holland Bloorview’s Ronald McDonald playroom as an early childhood studies student, then volunteer, and now staff member. But her connection with Holland Bloorview goes way back. Victoria’s younger sister Chrysoula, 19, developed a seizure disorder after having cataract surgery as a toddler. "It was a side effect of the surgery, but I only just found that out," Victoria says. "I thought I knew the story, but I keep finding out more." As a big sister, Victoria is very involved in Chrysoula’s life, so it's fitting that she's spearheading Holland Bloorview's new Sibling Support Program.

BLOOM: How did you get into this field? 

Victoria Rombos: It was because of my sister, mostly. 

BLOOM: How would you describe her?

Victoria Rombos: I describe her as sassy. She has an intellectual disability and uses a wheelchair and is non-verbal. We’re not entirely sure how much she understands, but I think she understands a lot more than people think. She’ll laugh at things, or pretend to be asleep and then pop open her eyes. She likes music. The Wheels on the Bus was always her song. I get her to play games on the iPad where she touches things and they change colours. I try to paint her nails sometimes, but she moves around too much. Recently she had a three-month stay at Sunnybrook due to pneumonia.

BLOOM: How have you found the move to the adult system?

Victoria Rombos: My sister is very small, so they were taxiing child-sized equipment back and forth from SickKids. Most of the nurses at Sunnybrook hadn’t encountered people with disability. They really didn’t have a sense of her needs, and my mom was going through the complaint department constantly. Now my sister has a trache, which has been a real learning experience.

BLOOM: Does your sister have home nursing at night?

Victoria Rombos: Until recently, she only had 12 night nursing hours a week, and my mom had to do everything else at night. We were just given an increase to 24 night hours a week.

BLOOM: That’s still a huge amount of night hours that your mom needs to do. What was it like growing up with a sister with pretty complex needs?

Victoria Rombos: It was really interesting. I only felt super different sometimes. The public school I went to had the Wayne Avenue preschool in it, so Chrysoula went there when I was in Grade 2. I remember when I asked the principal why my sister’s birthday wasn’t included in the announcements, like my birthday was. I used to like pulling the wagons with the kids in the preschool and I would get my friends to come and help. Since then, Chrysoula has gone to a segregated school, which works best for her.

I definitely feel isolated from other people sometimes, that I've had experiences that are different from my peers. I feel I would have benefited from knowing there were other kids who had a sib like me. In 2016, I sat on Holland Bloorview’s sibling panel. It was the first thing I’d done as a sib. I remember talking with Michelle Char, who was also on the panel, and being so surprised that she got it. She knew what a suction machine is.

When I was younger, I thought my parents liked my sister better than me because they spent more time with her. I was a little resentful, but I was a really empathetic kid. When kids with disabilities were picked on at my school I would tell people off. I had a lot of family support when my sister was in hospital, and would spend time with my grandmother and other relatives.

BLOOM: So your early experiences with your sister in the health care system influenced your career choice?

Victoria Rombos: Yes. I always wanted to work with kids with disabilities. Initially I wanted to be a teacher. I was interested in a special-education degree at the University of Toronto, but in my last year of high school they changed the requirements to include statistics and the highest math. That wasn’t happening! So I looked at the next closest thing, which was the program at Ryerson.

BLOOM: What ages does the early childhood studies program cover?

Victoria Rombos: Zero to five.

BLOOM: What’s a typical day like in the playroom for you?

Victoria Rombos: As it’s a drop-in, we never know what to expect. If there’s a clinic, we often get three to five kids in the morning, and then afternoons are typically a bit busier. We work with kids who are clients and their siblings.

BLOOM: What are the joys of the job?

Victoria Rombos: I like seeing the relief on parents’ faces when they realize they can take a break, or drop off all their coats. Sometimes parents will talk to me about something I can relate to, because I grew up with my sister. I like that I have that relatable sense. The kids are the most entertaining part. I like the different reactions they have, and when they ask lots of questions, or tell you about their favourite movie or what they've done that day.

BLOOM: What is the greatest challenge?

Victoria Rombos: Sometimes kids will ask a lot of questions of other kids who have disabilities, but without a filter. Sometimes we need to reroute those questions.

BLOOM: You’re running a new support program we offer for siblings aged seven to 18. How does it work?

Victoria Rombos: The sibling program shadows the family workshops that Melissa Ngo runs. They happen at the same time. We wanted to have a holistic family approach, so parents could go to the education workshop, while sibs come to our program, and patients go to the playroom.

There are official sibling programs in the U.K. and the U.S., but not in Canada. I’ve been getting inspiration from looking at those official programs, and then asking our siblings what they’d like to see.

I integrate things about siblings into relational games we play. One is called the spider’s web. One child holds a ball of yarn and says something about themselves, and if what they say relates to another child, that child puts up their hand and gets thrown the ball. It allows you to see how we’re all connected.

I may bring up a disability-related topic when I hold the yarn, like ‘my sister doesn’t talk,’ and see how many other kids relate to that. Another successful one is to ask what they like about their sibling, or what bugs them about their sibling. A child might say ‘I don’t like the sound of my brother’s CPAP machine.'

BLOOM: Why is this program important?

Victoria Rombos: If a child goes to a school that doesn’t have a lot of students with disabilities, or goes to a different school from their brother or sister, it’s important to meet other kids like them, and feel less isolated. Some kids may need to vent about something they feel is unfair in their family, and find another sibling who feels that way. It helps children feel less alone.

BLOOM: What do you think is most misunderstood about siblings?

Victoria Rombos: Even now, there’s a lot of stuff my friends don’t get. They may talk about the future when their siblings will have kids. My sister won’t have children, and it’s not in a bad way, but it’s a newer thing I’m dealing with. We really need to destigmatize disabilities. Even some people in my family will say hi to my sister, but they don’t know how to really approach her. When you have a disability and you can’t speak, a lot of people discount you. They need to realize there’s a personality there.

BLOOM: Do you currently live at home with your sister?

Victoria Rombos: Yes. I’m not in a super rush to move out. I feel like I’m needed there. I would rather stay home and help my parents. Chrysoula was going to school five days a week, but since she got her trache, she needs a nurse. So my mom was told she can only go to school three days a week.

BLOOM: That’s terrible! There seem to be so many situations we’re hearing about where children with disabilities are not able to attend regular school hours, for all kinds of reasons.

Victoria Rombos: It’s not a good situation for my sister or my mother.

BLOOM: If you could change one thing about how we support siblings, what would it be?

Victoria Rombos: Siblings tend to fall into a gap. We have different programs and events for parents. I’d like to see siblings treated more like patients, like they’re important, and not a side thing. We go through a lot of emotional stuff. I remember the first time they intubated my sister and how upset and emotional my parents became. That's when I realized how serious this was, compared to her other hospitalizations. When you see that it’s traumatizing.

To find out more about Holland Bloorview's Sibling Support Program, e-mail siblingsupport@hollandbloorview.ca. To refer your child, fill out this form. The program is funded through our foundation's No Boundaries program. 

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Why do so few medical trainees want to work with complex kids?

Photo of Jacob Trossman, 16, who has Pelizaeus-Merzbacher disease. You can read about Jacob and his family on his mother Marcy White's blog Cure PMD.

By Louise Kinross

Earlier this month JAMA Pediatrics ran a Viewpoint about why it’s hard to attract medical trainees to care for children and adults with neurological impairment. These are children with complex medical needs that stem from conditions like cerebral palsy or traumatic brain injury, or elderly patients with Alzheimer’s or other types of dementia.

Dr. Jay Berry, a hospitalist who works with children with medical complexity at Boston Children’s Hospital, and his wife Dr. Sarah Berry, who cares for elderly nursing home residents through Beth Israel Deaconess Medical Center, suggest a number of reasons clinicians may have an implicit bias against these populations: neurological impairment isn't curable or diagnostically interesting, it requires an enormous amount of time, and many specialists, to treat, and insurers in the U.S. do not reimburse well for it.

BLOOM wondered if there was a more basic bias against people with cognitive disability at play, even though not all children with medical complexity have intellectual disability. We interviewed Dr. Jay Berry.

BLOOM: Can you describe your work?

Dr. Jay Berry: Our group has primary care for about 3,500 kids. Most of my clinical work is as a hospitalist, so I primarily care for kids when they’re inpatients. I also run a perioperative program where we work with the surgeons and anesthesiologists to prepare kids from our complex care program for high-risk surgeries such as spinal fusion, and follow the kids after surgery in hospital. Research grants fund 100 per cent of my time, and I spend about 20 to 30 per cent of my time caring for kids.

BLOOM: Why did you choose this field?

Dr. Jay Berry: I had a pivotal moment as a med student when I was rotating through a pediatric pulmonology rotation at a children’s hospital. I thought I was going to learn how to take care of kids with cystic fibrosis and congenital brain malformations. But most of the kids we saw were children with neurologic impairment who had had big orthopedic surgeries and were taking a long time to heal.

I asked about that: ‘Why do we have all of these kids?’ And I was told: ‘Sometimes these kids fall through the cracks. The orthopedic surgeons are thinking about hips, and the neurologists are thinking about seizure management, but pulmonologists want to see how everything fits together in the context of a child’s neurologic impairment. We want to wrap our heads around the entire child, to best help them.’ That was compelling to me.

BLOOM: How do you describe severe neurological impairment?

Dr. Jay Berry: Whatever is going on in the neurological system is severe enough that it’s affecting major functions such as walking, talking, breathing, digesting food, using hands and sometimes thinking. It interferes with their quality of life and being able to do what they want to do.

BLOOM: Do the children you see speak, or have a different way of communicating?

Dr. Jay Berry: Some children have fantastic expressive speech and others use augmentative communication devices or other ways to assist their speech. We also have children whose parents are amazing at picking up on the nuanced way the children communicate through eye movement and blinking and facial expression.

BLOOM: So some of the children are cognitively intact?

Dr. Jay Berry: Yes. We could have a child who is trached and vented due to neuromuscular impairment who is cognitively normal. One of the reasons we wrote the piece, for providers who aren’t familiar with this work, is because every kid is different really. We misjudge these kids when we lump them all together.

BLOOM: You say in your piece that there’s a miniscule number of doctors trained to work with these kids. How do their families find care?

Dr. Jay Berry: Unfortunately, the system isn’t proactive enough to have an intake system across the country where if I have a kid with neurological impairment in rural Alabama, we tell the family ‘We need to get you plugged in with these local guys.’ It’s often word of mouth and parents talking to parents. What happens most, which is not ideal, is families that are diligent say ‘I’m not going to stop till I find a provider who will care for my child,’ and eventually they find folks with experience. But it’s very haphazard.

BLOOM: So the ideal is to have a doctor who follows and coordinates the big-picture care of a child, but when families don’t have that, they may be going from specialist to specialist?

Dr. Jay Berry: Absolutely. I would hypothesize that maybe even the majority of families have that experience. If you’ve never had someone who's thinking of the entire picture and making sure all of the providers work in a concerted effort, you don’t know what you’re missing.

BLOOM: You suggest people aren’t attracted to this work for a variety of reasons, including that there isn’t a cure.

Dr. Jay Berry. I think so. We need a shift of mindset. It’s part of the human personality to want to be problem-solvers. There’s a sense of: ‘I can find a problem in five minutes. If it’s an appendix, I can take out your appendix. I’m done.’ With chronic disease it will never go away. What we need is another type of problem solver who says ‘We may not be able to solve this problem, but I can work with you on it, even if that takes decades, and help you, and I’m not going away just because we can’t fully tackle what’s happening with your body.’

It’s the ‘long-term-ness’ of this relationship that allows you to be more knowledgeable and a better clinician for the child. You keep learning more as time goes on. This holds true even for inpatients. Most of my work is taking care of kids when they’re hospitalized. But these kids are hospitalized so frequently I could see the same child four to five times a year. Having that memory and that experience—of last time we tried this, and it didn’t work—that continuity, is important.

BLOOM: You note in your piece that clinicians may not work with kids with medical complexity because they don’t find them diagnostically stimulating. What disease is?

Dr. Jay Berry: In pediatric training, it would be a rare, acute disease, like Kawasaki disease. It presents in an interesting way. The symptoms come together, but are subdued at first, and you have to recognize them. When you do, and the diagnosis is made, you know exactly what to do, and the disease is gone.

BLOOM: Is it something about it being rare that makes it interesting?

Dr. Jay Berry: Yes. A lot of pediatricians are drawn to pediatric disease because in the adult world you’re dealing with a lot of high-blood pressure and diabetes, and children tend to have more rare things that can pop up, and you have to have your radar on all the time. But if you have a new infant that joins a practice after being in the NICU due to a hypoxic event at birth, they go on to have cerebral palsy. There’s a sense of ‘I know what happened, they have CP, that’s never going to change.’

BLOOM: Why is treating kids with medical complexity not well reimbursed by insurers?

Dr. Jay Berry: Our U.S. health system is still based largely on a fee-for-service model. You’re incentivized to see large numbers of children in an outpatient clinic, as fast as you can. Reimbursement from private and government payers tends to be less for children than adults. As outpatient pediatricians, we struggle with paying the electricity bill and keeping enough revenue generated from payments to keep our nursing staff. I could see six kids over the next hour with ear infections, or I could see one child with CP who is coming in with respiratory distress, who will take me an hour, or even longer, to try to figure out what is going on. But I won’t be reimbursed the same for seeing the kid with CP.

BLOOM: In your article you mentioned discriminatory events towards children with medical complexity in the U.S. Were you speaking about cuts to Medicaid?

Dr. Jay Berry: No. We were thinking about disparities in health care, and in life, based on race and ethnicity.

BLOOM: So sometimes families can’t access the care they need based on race?

Dr. Jay Berry: Yes, we do see that, which is really troubling. There’s a lot of emotionally charged thinking here around race and ethnicity. If you throw the interaction of race in with neurological impairment—those kids may be the most vulnerable to not receiving the care they need.

BLOOM: Because they have two biases against them?

Dr. Jay Berry: We have areas of the U.S. where outpatient pediatric practices will not accept any patient using government insurance. They will not enroll any of these children in their practice. You may be a child that has CP and needs a lot of ongoing care, and it’s a double whammy.

BLOOM: Separate from some of the other disincentives to working with children with medical complexity, is there a more basic bias against working with people with mental disability?

Dr. Jay Berry: I think you’re spot on. That gets back to our earlier discussion about out how some people lump all children with CP together, and make judgments before assessing what cognitive capacity they have. Or they may be thinking—‘they’re in a wheelchair, and it will take forever to get them into my office, or I can’t get them on the table to examine them.’ Or ‘it’s going to be hard to assess what’s wrong if they can’t communicate, if they can't tell me.’ All of these things make people apprehensive to care for these kids.

BLOOM: Do they ever have discussions in medical school about why people want to go into different fields? I think if someone listed off the concerns you just did, which are really prejudices, some students would start objecting.

Dr. Jay Berry: There’s so much curriculum to cover in medical school. So much of medical school and residency is acute care, and trying to wrap your head around the treatment for an acute condition. If you upfront said to students: ‘Let’s discuss why you have an affinity to work with certain kinds of patients.’ And then after hearing what they said, asked ‘Is it okay to have those perceptions? Are they accurate?’ I think some would say ‘I’ve never thought about it that way, and I don’t want to practise medicine that way.’

There has to be some kind of wrap around to challenge trainees to think about being comprehensive in caring for kids with complex needs—to think about all of the child’s health needs and how to be a team leader with health providers.

BLOOM: How are relationships with your patients different from those doctors have in acute care?

Dr. Jay Berry: Over time, they become so much richer and deeper than on the acute-care side. However, there’s a ‘high’ you feel on the acute side, an instant gratification when you can help someone really quickly. It’s very attractive.

Over the long-term with a family with a child with neurological impairment, it’s inevitable that some not so positive things will happen—either physically, or the health system will let them down, or I will let them down.

We try to be proactive about that, to have conversations with families where we mention some of the things that might happen. Even though the families obviously aren’t happy when they do, they tell us ‘We respect you for being transparent, and telling us this was a possibility.’ That takes our relationship to another level.

Treating acute differences is kind of like having an incredible first date, and having a long-term relationship with a family with a child with neurological impairment is more like having a marriage.

BLOOM: You said in your piece that clinical research about complex kids is lacking. What’s an example?

Dr. Jay Berry: If we look at the perioperative care we’re doing here, where we have the structure of having a person who is in charge, and managing the care for these complex kids, does that make a difference, and can we quantify that difference? That entire body of literature is almost non-existent.

BLOOM: So you mean make a difference in family satisfaction or patient outcomes?

Dr. Jay Berry. There is some literature to support that. But having the funding support to be able to do health-system type interventions, the methodology to conduct these studies is very tricky. It would be difficult to randomize children with scoliosis with whether they got a spinal fusion or not. You can’t double blind people to that, and ethically it wouldn’t fly. But when we look at the decision to undergo major spinal surgery for kids with scoliosis, we don’t know what happens to the kids whose families decided not to do that. Something as basic as that we don’t have.

BLOOM: Why is it not as attractive to fund this kind of research?

Dr. Jay Berry: From a funding standpoint, it’s not as attractive to say ‘We’ll invest $50 million to really advance decision-making for spinal fusion with kids with scoliosis,’ as it is to say ‘We’ll invest in basic science research to discover a gene that will prevent scoliosis.' It’s easier to migrate towards the sexier things.

The health care costs for children are miniscule compared to adult patients, so kids are already kind of at the side of health care. And now we’re talking about a small population with neurological impairment who need a nuanced surgery—they’re not on the radar.

BLOOM: We interviewed Dr. Eyal Cohen at SickKids about his study using a Danish registry that showed mothers of children born with major anomalies had a 27 per cent increased risk of death when compared with mothers of children born healthy. How well do we support parents of children with medical complexity?

Dr. Jay Berry: Not well. I think we struggle so much just to find the time to take care of the kid's physical health, and if we get that okay, we’re hopefully addressing the child’s mental and emotional wellbeing. And then, if there’s time left over, we think about the parents.

What we’re seeing here with Eyal is so much unfortunate loss of employment, financial struggles, marital discord. There are so many huge things the families are facing, in large part because we tend to throw so much back on the parents.

BLOOM: Our families have a lot of problems with getting home-care nursing, so often they don’t have enough night nursing hours or the nurse cancels and there’s no backup. So at a practical level, if parents aren't getting any sleep for days and days, it’s hard to be able to function, let alone be happy. But I guess what you’re saying is that you have a hard enough time supporting all of the needs of the children.

Dr. Jay Berry: Not supporting the parents it is an atrocity. You’re totally right. It’s just bandwidth, and if I find a parent who’s struggling, what can I do to help them? It’s really challenging to help them solve their problems, and get their lives in shape. It’s ridiculously difficult.

We do find our palliative care team can be very effective in helping families navigate through that space, and we work a lot with them to get that going.

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The care crisis that should shake us all

By Louise Kinross

If you didn't see this CBC White Coat, Black Art town hall on the crisis facing youth with complex disabilities aging out of the services and funding they and their families depend on, it's well worth the listen. It's packed with firsthand stories from parents, a young adult with a disability and experts in children's rehab, education, mental health and law, a couple of whom have siblings with disabilities.

You know how I can tell it's the best thing I've heard on the topic? As a parent, I was shaken after listening to it, and I still am.

It was three years ago that I found myself writing to the deputy minister of Ontario's Ministry of Community and Social Services, our MPP, the ombudsman and all kinds of people within the bureaucracy. My own son was leaving school and we had no funding to support what he would do during the day.

We had registered with Developmental Services Ontario three years earlier, but the person who came out to do the four-hour assessment told us at the end of it that there was no money. The Ministry had frozen new money for Passport funding, which is the main way to access money for a support worker so that your child can volunteer or do a work program or fill their day with a passion. There were no government-funded programs available to us.

At a time when most parents are sending their children off to college, I needed to help my son carve out a good life, while I continued to work outside the home. 

Today, he does farm chores at Windreach Farm on Mondays and Fridays. Horses on Mondays, and chickens on Fridays. On Tuesdays and Wednesdays he cleans at Variety Village. On Thursday he goes to an arts program at L'Arche.

In the fall after my son graduated, after an extraordinary amount of advocacy, the likes of which I'd never needed in the children's system, we received a small amount of Passport funding, certainly nowhere near sufficient to cover our worker hours Monday to Friday.

Remember, I'm someone who's worked in the field since 1999. I have connections. If that was the best I could do, what happens to the parent who doesn't speak English, or isn't able to fit extreme advocacy into their day?
 
Over the next two years I fought to have that funding increased. This year it is at an adequate level, and for that I am very grateful. Actually, it's a mix of guilt and gratitude. I feel guilty that many families have not received this funding. I feel guilty for the numerous times I was told by government gatekeepers that other families had real problems—their kids were homeless or the parents were dead. Because that's the way the system plays parents off each other. I can't count the number of times a government employee told me that unfortunately, in the adult system, we have to wait for someone to die to open up resources. 

But funding is always tenuous, especially with our new government. And we have no leads on supported housing for our son when we are no longer here.

So when I listened to Rose Canto, above with son Matthew, talk with Dr. Brian Goldman about not knowing how to fill his day when school ends at 21, I felt a familiar sense of panic. I felt wobbly. 

The degree to which this system brings parents to their knees can not be overstated.

Our children are valuable members of society and some of them require similar supports as adults. That many will instead sit at home all day, in front of the TV, with a parent, should shake us all.

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'The people that have the voice are too tired to raise their voice'

This family! If you haven't watched the film Caring for Tor that aired on CBC The National, you must. It fits perfectly with Mental Health Week as it relates to families caring for young adults with complex disabilities and medical needs. 

Caring for Tor is told from the perspective of Stephane Alexis, 24, who has put his life on hold to care for his younger brother Torence. "He's non verbal, he doesn't really have any balance, he's completely dependent," Stephane says.

"A year ago, when Tor turned 21, he graduated from high school, and all the services stopped. So when that happened, we didn't have any support during the day and all of the work kind of fell to my dad."  

With his mother working full-time, Stephane became one of Tor's caregivers. He describes caring for Tor with his parents as being like a member of a finely coordinated orchestra.

The love and dedication in this family is boundless. But the demands are constant, round the clock, and Stephane worries about the future.

"Any kind of long, continuous strain has an impact on you mentally," Stephane says, noting that his friends are focused on their careers and chasing their dreams. 

"I can't do this forever...What will happen if I'm not there to kind of relieve the pressure? Everyone's getting older and the needs are going up and it's kind of breaking the balance. It's easy ignoring these people cause there's no voice. Because the people that have the voice are too tired to raise their voice."

The Centre for Mental Health and Addiction has an excellent campaign designed to remove stigma about mental health, and it certainly applies to the needs of this family: 'My mental health is as important as my physical health.'

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A social worker who's lived the other side of rehab

'They tell me that it's different working with me'

By Louise Kinross

Gabriella Carafa is a social worker whose connection to Holland Bloorview goes back to her childhood, when she visited our neuromuscular clinic. Eleven years ago, Gabriella participated in Holland Bloorview’s The Independence Program, living for three weeks in a university residence to learn a variety of life skills. Since then, she’s worked as a youth facilitator at The Independence Program and at our Youth Weekend Retreat.

Three years ago she came on board as a social worker in our child development program, working with work with youth with cerebral palsy, spina bifida, spinal-cord injury, craniofacial differences and complex medical needs. She also provides social work support to young adults in The Independence Program.

BLOOM: What drew you into this field?

Gabriella Carafa: I wanted to be a social worker because I’ve always been interested in people’s emotions and supporting them to cope with their life experiences. I thought I could contribute greatly to working in children’s rehab because of my rich lived experience, in combination with my clinical skills.

My clients say it best when they tell me that I understand things and they don’t feel like they need to explain as much to me. They don’t have to explain about the frustrations around accessibility, or how hard it is to go out with your friends, because I understand. They tell me that it’s different working with me.

BLOOM: What are some of the common issues they bring to you?

Gabriella Carafa: The common issues are around acceptance of disability and self-esteem. Anxiety is a huge one and depressive symptoms, even if they don’t have a formal diagnosis. As they’re getting older, they recognize more things that they can’t participate in in the same way as their peers.

BLOOM: Do they also recognize the stigma of disability more?

Gabriella Carafa: Yes. If it’s not overt, it may be that they’re not invited to parties, because people assume they can’t go up the stairs, for example.

It’s not one of these things, but a combination of them: dealing with anxiety and depression and feeling like they don’t fit in or it’s hard to fit in.

BLOOM: What is the greatest challenge of your job?

Gabriella Carafa: My greatest challenge is supporting youth with complex medical and cognitive disabilities in their transition to adult services. In the adult realm, there are long wait lists for services and funding. For families who maybe had funding in the children’s system for respite—that ends at age 18.

Sometimes I feel helpless. I try to make families aware of all of the funding changes as soon as possible, and look at ways they can manage by increasing their support network and connecting with other families to advocate for system change.

BLOOM: What do you love about your job?

Gabriella Carafa: So many things. I think social work is a privileged profession. I’m a big believer in being vulnerable and being real, and in social work most of the time you see people at their most vulnerable, when they’re going through a tough time. I get to witness the strength of clients and families.

I ask those questions that other professions may not be asking, like ‘How are you coping?’ or “What has the impact of the diagnosis been on you and your family?”

You’re normalizing feelings they may not want to admit to other people.

Parents may be ashamed that they’re not coping well, and you create that space where they can just be honest without guilt or fear of judgment.

BLOOM: How do you cope with some of the emotions that come with your work?

Gabriella Carafa: I am working on not taking the work home. That doesn’t mean I don’t care. Making sure you have activities you do outside work that you enjoy is important. I also have a lot of social worker friends—some here and others not—and we can lean on each other for support.

What’s hard is when families think I should do more to change all the systems in adult services. When families want me to do more than I can, it’s hard on me.

I feel proud that I do this work and I feel I make a difference by creating a safe space and providing families with the information they need. They feel they have someone in their corner.

BLOOM: I know you also supervise social work students.

Gabriella Carafa: I hope social workers coming into the field have a better understanding of disability, and I work hard to provide that both as a social worker and as a person with a disability. I can educate future social workers around disability and the stigma that comes with it. I support them to develop an anti-ableist practice.

BLOOM: You said your understanding of independence has changed since you went to The Independence Program as a client.

Gabriella Carafa: I recognize that our traditional ideas about independence aren’t possible for every client, so why are we thinking about independence this way? With medical advances, a lot of youth with complex needs are living longer.

Until I began working as a social worker here, I didn’t have a thorough understanding of the wide variety of disabilities our clients have. Most of the youth I work with have complex needs. Many won’t go to post-secondary education, move out on their own, get a job, or volunteer, and that’s okay.

Even the people who are going to The Independence Program have changed. We have more people with cognitive, rather than just physical, needs. These are individuals who may never live independently in the traditional sense. But that doesn’t mean they can’t build skills and recognize when they need support.

BLOOM: I was speaking with a colleague whose family is from Ethiopia. She said our obsession with ‘independence’ as the end goal of life is hard for them to understand.

Gabriella Carafa: Western ideas of independence are not reflected in many of the cultures we serve here. And whether or not you have a disability, people are living with their parents, spouses, children and grandparents, and the families are interwoven and interdependent. Why is that a bad thing?

On the other hand, we do have situations where the youth wants to be independent, but culturally the family doesn’t believe in that. They don’t want their child to move out.

Some parents experience grief when they realize traditional independence may not be possible for their child. However, that doesn’t mean there aren’t other possibilities for having a great life as an adult. That’s why we need to continue having transparent conversations with our clients and families that explore what is possible.

BLOOM: If you could change one thing in the health system, what would it be?

Gabriella Carafa: Adult services as a whole. I think we do a really good job in the children’s system, and adult services need to reflect that. I wish the adult systems were better connected and that adults with disabilities had more funding available to them. And I wish the systems reflected people with diverse identities and needs. Ha—that’s a lot!

BLOOM: What have you learned from families?

Gabriella Carafa: That they’re resilient. That’s what I’ve learned.

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'Care for the family shouldn't stop when the child dies'

By Louise Kinross

When Bruno Geremia’s son Matthew died two years ago, Bruno's sense of loss extended to the people he knew at Holland Bloorview during Matthew’s life.

“When you lose your child, you also lose your care team and the community at Holland Bloorview,” says Bruno (centre, with wife Marlene right and family leader Vivian Low left).

“When you walk through the door for the first time after, there's a sense that you don’t belong anymore. We live in a culture that doesn’t want to talk about death, especially if your child is really complex or fragile.”

Bruno and other parents want to change that.

They’re working with Holland Bloorview staff to create an annual celebration of life event and other supports.

The first event will take place in Spiral Garden on June 11. It’s for Holland Bloorview families whose child has died in the last two years. There will be photographs of the children, fun activities for the whole family, and the dedication of a piece of art. “We’re working with Spiral Garden staff to create a butterfly that will honour the children,” Vivian says. Her son Ethan died almost 10 years ago. “The plan going forward is that every year we will have the celebration and install a new piece of art.” The parents also hope to have a dedicated art work inside the hospital.

Vivian recalls that after her son died, “there was no support besides Bereaved Families of Ontario. But it’s in the community, and you have to retell your story to strangers.”

Families feel cut off from “the people who know the road we’ve travelled, and who knew our child,” Bruno says. “We believe it shouldn’t end like that.”

Bruno and Vivian, who are both members of Holland Bloorview’s family advisory, say the group has been an important ongoing connection for them. “I was lucky because June Chiu called and said ‘I hope you’ll come back and be part of the family advisory,’ Vivian says. “Sometimes it was hard, and I’d feel a little like a fraud, like my child isn’t going to any of the clinics, maybe I shouldn’t be here? There’s a fear of being an outsider.”

But Vivian says she was welcomed back. “When your child dies, you get the feeling that nobody else understands, and they can’t. That’s why it’s so important to talk to someone with the same experience, who knows what it feels like to live through that. I had June, and then Bruno and Marlene, to talk to.” Too often, Vivian says, Holland Bloorview families “don’t have that opportunity.”

To remedy this, the parents plan to set up coffee talks a couple of times a year where parents meet at Holland Bloorview to remember their kids and share support. “We’d also like to look at supporting siblings,” Vivian says. “For us, that was a huge gap when parents are struggling themselves.”

Bruno says his continued participation on Holland Bloorview’s family advisory “is a tribute to Matthew’s life. Before Matthew died, I didn’t think I’d be strong enough to do that. But after, I thought, everything I’ve learned, I’ve learned because of Matthew. This keeps him alive.”

Vivian agrees. “We’re a voice for our children and the needs of our families. Our children keep us connected to Holland Bloorview and we honour them by staying involved.

Bruno and Vivian shared these reflections that may be helpful to other parents whose child has died:

• There is no road map for grief, no time line or 12 steps. It’s individual, and you have to accept that your journey is going to be that way. It will change from day to day and year to year.
• Anniversaries, especially in the first year after your child dies, are very hard.
• Grief can ambush you when you’re least expecting it.
• Talking to other parents who’ve lost a child is soothing. You don’t have to explain anything, and if you fall apart, it’s okay.
• Counselling helps.
• Find ways to honour your child. Vivian’s family raised money for a multi-sensory room in the school her son went to, and where her daughter still attends. Bruno’s family participates in the Hike for Hospice to make people aware of the amazing care they received at Emily’s House.

Advanced care planning with a palliative care team can help families build beautiful memories with their child. “We spend so much time going to appointments, doing therapy, and for the more complex kids, just feeding them, that we don’t get to have family time,” Vivian says. “We need to be encouraged to not feel guilty about putting that aside, so we can have fun times as a family.” Bruno notes that his family cherished Thanksgiving, Christmas, birthday and Easter celebrations with Matthew while he lived at Emily’s House.

Most important, “Care for the family shouldn’t stop when the child dies,” Bruno says. “If we are family-centred, we need to continue to provide care to the family that has to go on.”

Bruno and Vivian say social workers, nurse practitioners and senior managers at Holland Bloorview are eager to participate. The other parent on the celebration of life committee is Cheryl Runstedler. You can read about Cheryl and her son Jordan here. To learn more about the June event, e-mail social worker Barb Germon at bgermon@hollandbloorview.ca.

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'The goals of the family direct where we go'

By Louise Kinross

Erin Brandon is one of seven nurse practitioners at Holland Bloorview. She runs two clinics—one for families of children with cerebral palsy and complex medical needs and one for families of girls with Rett syndrome. Her appointments last up to two hours and include comprehensive medical assessments, community resource planning and troubleshooting and the emotional support that enables families to care for children with high needs at home, rather than in the hospital.

Erin came to Holland Bloorview in 2014 after spending a year in the complex care unit at SickKids Hospital. ‘There’s something about these kids and their families that really struck me,’ Erin says. ‘There was an openness. I felt I was included as part of the family. I felt like I had an impact on their overall quality of life.’

BLOOM: How did you get into this field?

Erin Brandon: My mother always told me I should be a nurse. She said I was very caring and nursing would be an area that I would excel in. She had an inkling and she was absolutely right. At first I worked in general surgery at SickKids. Nursing brings an inclusiveness and an intimacy with the care you provide. I had also worked as an undergraduate at Sunnybrook in cardiology and met a couple of the nurse practitioners there. I was in awe of the dynamic they added to the health care team: the direct patient care, the clinical management, and the medical management. I felt that in the role of the nurse practitioner I could do a little bit extra for a family.

BLOOM: What is a typical day like?

Erin Brandon: There are never typical days! I am constantly learning new things from families and kids. If it’s a clinic day I usually have two appointments that can last up to two hours each. I do a comprehensive head-to-toe assessment and we try our best to cover every area of care. The goals of the family direct where we go. We talk about community resources, goals for functional abilities, medical concerns, family dynamics and long-term planning. These children are always going to need 24-hour support so you can’t just focus on the medical—it has to be everything. In-between assessments I get six to 20 calls a day from families in the community who need support. I provide triage to families if their child has a fever and isn’t eating and they’re trying to determine whether to take their child to emergency or a pediatrician. These families are very good at advocating for their children and they know their kids better than anyone, but at times providing a bit of reassurance and support to know they're doing the right thing helps to boost their confidence.

I work with schools, home care resources and other pediatricians to try to make the continuity of care better and break down barriers outside these walls.

BLOOM: I think every family could benefit from a nurse practitioner!

Erin Brandon: Any family can benefit from having the coordination and support, but as our resources are limited, we typically get involved when there are a lot of things falling through the cracks and they need extra support.

BLOOM: What’s challenging about this work?

Erin Brandon: One of the amazing things about Holland Bloorview is the opportunities to get involved—in research or program management or even in the strategic plan. Sometimes it’s a challenge not to get pulled in too many directions. I want to provide very good quality care to the families and that takes time. One common question that I get is 'Why didn't you become a physician?' I love being a nurse and being a nurse practitioner allows me to have the connection, flexibility and time to spend with families that I wouldn't have in another role. That helps me do the job that I do. There are so many pressures on these families, so many targets they need to look after and meet. I’m there to help them prioritize what is most important to them at this time, and what can wait.

BLOOM: And to give them permission to wait. I was just reading an article about the invisible work of patients—about how we expect so much from families, and then when they don’t get some of the tasks done, we tend to say they’re not following through or not being compliant.

Erin Brandon: Nursing has helped me so much in a medical world. When a family’s world has medical complexity, we’re very good at making work and identifying problems that need to be fixed. But as nurses, we’ve always been taught that the client and family is at the centre of everything. They’re the expert at what they want in their life. Listening to families helps to direct the medical piece, so that it fits into their life rather than standing outside of it.

BLOOM: Yes, so the family isn’t shoved into an idea of what other people think is ideal for them.

Erin Brandon: I can give a solution or identify next steps, but if that doesn’t fit with a family’s goals, why are we taking these steps? A good portion of what I do is taking this guilt away from families. There’s so much pressure on them. It needs to be about what they need, rather than what my recommendations are.

BLOOM: How do you manage the emotions that come with your job?

Erin Brandon: This is the most humbling role I’ve ever had, because of how open families are with me. There are times when you take it home, I don’t know how you couldn’t. There are days when I cry with families. But I cry in the losses and the successes. These families include me as an extension of their family, which is the biggest honour. And the successes, no matter how big or small, always outweigh the loss for me.

I also have a very supportive team here, which includes physicians, therapists, nurses, nurse practitioners and managers. I can talk to them to work things through when I need to.

BLOOM: So you talk to one of them if you’re having a difficult situation with a family?

Erin Brandon: You have to. I think there are things that happen with children with medical complexity that no one can anticipate.

BLOOM: What do you love about your job?

Erin Brandon: It’s so hard to describe. It’s the kids. And the families. I’ve had conversations in clinic that I don’t think these families open up to other people about. And to have that connection with a family is the most rewarding thing you can ever have. When I was in general surgery, a family may come in and go home, and you may not see them again. In this work, to see the growth of a family and a child over their life span is an incredible gift. That’s one of the things that drew me here and to complex care.

BLOOM: What have you learned from families?

Erin Brandon: One of the biggest things I’ve learned is that everyone is different, no matter what their diagnosis. The other thing every single family has taught me is that no matter whether they’re flailing or they have it all pulled together, there is a huge amount of stress that they come with every day, just to walk out the door.

BLOOM: Have you changed?

Erin Brandon: I was very medically focused when I came here. I feel that families have opened me up to so many other possibilities. They’ve taught me what is important to them and that the medical part is not always the most important part of their lives. Perhaps the parent just needs to talk about something that’s happened, because to them, they can’t get past it until they’ve talked about it. For me to be in an environment where I have that flexibility to support families in this way is fabulous. I also have the option of saying ‘We have a lot to discuss today, maybe we should also meet again?’

BLOOM: If you could change one thing in health care, what would it be?

Erin Brandon: We’ve got so many great organizations in Toronto but they all have different systems and set-ups. We need to break down those walls. Why do we need a medical record at every single facility? Why not just one system across facilities, so everyone is connected? One thing that frustrates me is the money comes from the same spot—the government. We’ve created this. We could make it so much easier for families if we improved our connections—even between SickKids to here and other [children’s treatment networks].

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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.

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Study links high-needs children to increased death risk in moms

By Louise Kinross

Mothers of children born with major anomalies like heart disease or Down syndrome had a 27 per cent increased risk of death when compared with mothers of children born healthy, according to a population-based study published in JAMA last month.

The researchers identified over 41,000 mothers in a Danish registry who had a baby born with major anomalies between 1979 and 2010. They matched each mother with 10 mothers of the same age who had unaffected babies the same year, then followed the two groups to 2014 to compare mortality. After a median follow-up of 21 years, 3.1 per cent of the mothers of infants with anomalies had died at a mean age of 49, compared to 2.4 per cent of the mothers whose children were not affected.

“I think the results are troubling,” says lead investigator Dr. Eyal Cohen, a pediatrician at SickKids Hospital. “The absolute risk to a given individual is not high, but on a population level, a small increased risk multiplied by thousands of people is much more substantial.” BLOOM interviewed Dr. Cohen.

BLOOM: Why was there a need for this study?

Eyal Cohen: Parents who look after kids with serious health issues report that it’s extremely stressful, and we know from previous surveys of mothers in particular—because they’re generally the primary caregiver—that they report their own physical and mental health as poor. But no one had ever looked at mortality.

BLOOM: In your study you reference research showing that this type of parenting can cause premature cell aging.

Eyal Cohen: Yes. One of the papers I cite was from a Nobel Laureate who was the first person to discover telomeres and their association with premature aging of cells in the body. When I went back to read her original research, I was surprised to find she was studying mothers of children with severe health issues. So there’s a biological basis for this and also reports from people of poorer health outcomes.

BLOOM: What kind of conditions did the children in the study have?

Eyal Cohen: We looked at two groups: those with anomalies affecting one organ system like heart disease and those with multiple anomalies, like a child with Down syndrome and a heart defect. The reason we decided to focus on congenital anomalies is that they’re clear cut—you either have them or you don’t. They’re easily diagnosable and happen at a fixed period of time, whereas disability can be more gradual. We wanted to test our assumption that caregiving stress was associated with higher mortality risk. We anticipated that mothers looking after sicker children would have more of this outcome. But I have no reason to believe that the findings wouldn’t be generalizable to a broader group with disabilities.

BLOOM: What was the main finding?

Eyal Cohen: We found there was an increased risk of dying of 27 per cent in mothers who gave birth to babies with major anomalies, compared with mothers of the same age, with the same number of previous births, who had unaffected children born the same year. When we adjusted for factors such as the mother having health problems herself, the difference was slightly smaller, a 22 per cent increase. The increased risk of dying in mothers with more severely affected babies was 31 per cent. One thing that surprised us was that we saw this effect even within the first 10 years after delivery, and the same effect continued downstream.

BLOOM: What types of diseases did the mothers die of?

Eyal Cohen: There wasn’t one cause of death. We did find a fairly substantial increased risk of dying of a heart attack, and heart disease has been associated with chronic stress. The mothers of children with anomalies had a 97 per cent increased risk of dying of a heart attack compared to the other group. There was only a slight increase in risk of cancer, which is not thought to be triggered by stress.

BLOOM: So what does this mean for mothers raising children with complex needs?

Eyal Cohen: Their relative risk of dying of a heart attack is almost twice as high, but at an absolute level, heart attacks are not common in young women. So the overall risk isn’t huge. If a woman has a child with a major anomaly, it’s not likely that she’s going to die prematurely. But on a population level, a small increased risk, multiplied by thousands of people, is much more substantial.

BLOOM : Your study says that the clinical importance of the increased risk of death is uncertain.

Eyal Cohen: This is one paper and I don’t want people to think causality is proven with one paper. The evidence is compelling and troubling.

We often put the words maternal and child health together, and we know that if mothers are healthier, it will make their children healthier. But we spend a lot less time, particularly in health policy and support, on the concept that an unhealthy child can affect the health of a parent and family.

We don’t have a lot of programs and supports and funding dedicated to these families. I look after many families of children with disabilities and other complex health needs and it’s not infrequent that we have to address the parents’ health, and that is not easy to do. We need to see if what’s true in Denmark is true in Canada, and develop evidence-based interventions to see if we can attenuate these outcomes.

BLOOM: Your study notes that families of children with health problems in Denmark have extensive health and social supports.

Eyal Cohen: You’re correct. I would expect you would see the effect more here, where the supports are generally not as great.

BLOOM: You refer to research of senior caregivers that shows that sometimes the caring protects the health of the caregiver. Why would this be different in parent caregivers?

Eyal Cohen: I think there’s a substantial difference in how we think about caregiving in seniors as opposed to pediatrics. When an elderly person gets ill, their caregivers generally have a choice. They can care for their loved one at home or put them in a facility. But with children, we have a societal expectation that they’re raised by their families—for all the right reasons—and it’s rare that a parent of a disabled or very ill child puts them into care. Mothers do most of the caregiving and they don’t have choices in these matters—that’s an important part of it.

The duration of caregiving is also much longer. And there’s extraordinary trauma associated with the discordance between either societal or personal expectations of what caregiving of a child will be like. It’s not a societal expectation that one will raise a chronically ill or dependent child.

There are also differences in that generally the scenarios we studied were highly unexpected. Most women go into a pregnancy expecting a healthy birth. But while there can be a catastrophic event like a stroke for seniors, often there’s a bit of forewarning that a dependent older person’s health is declining.

BLOOM: It’s frustrating as a parent to know of these increased health risks, but not see more research into how we can reduce the risks.

Eyal Cohen: Some of the questions we discussed still need to be teased out—mechanistically, locally or contextually. But I think I agree with you that the direction of this work needs to move on the intervention side.

We need to look at more intensive psychosocial and mental health supports, especially during times of extreme stress—at diagnosis or transition from hospital to home and across different life stages. We are trialing mindfulness interventions for families being discharged from our NICU after months of being in an extremely stressful environment.

Caregivers are so busy that it wouldn’t surprise me if they don’t have time to get their own primary health care and screening. Do we need an adult health clinic embedded at Holland Bloorview or SickKids, where parents will be seen at the same time their children are seen?

BLOOM: That sounds like a fabulous idea! It’s similar to the program at SickKids for teen mothers where they combine health appointments for the mother and baby.

Eyal Cohen: We also need to look at high-level policy. There’s work showing that families of children with complex needs get poorer over time. We need to rethink parental leave and disability taxation policy.

BLOOM: What advice would you give mothers reading the study?

Eyal Cohen: I look after many of these kids and there’s a subgroup of parents who have extraordinary resiliency. It blows me away how resilient many families are. I would advocate that we use strength-based approaches to thinking about this. How dedicated a family is to a child can be a good and extra positive experience. But particularly for those families who are struggling and find it a battle, they need to be attuned to their own health and seek out health care. At this point, unfortunately, our system isn’t set up to screen parents for that. Until that happens, caregiving mothers need to be attentive to both their stress and their health.

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