A child's brain injury has ripple effects on siblings. SibKit is a safe space to explore them

By Louise Kinross

SibKit is a new, 50-page booklet designed for brothers and sisters of children who experience brain injury as a result of car accidents and other traumas, or serious illness. It was developed at Holland Bloorview with input from siblings, clients, parents and clinical staff.

It’s a book packed with fun, interactive activities to help siblings understand the brain and different kinds of injury; the Holland Bloorview rehab team; how their brother or sister has changed, and how to support them; their own feelings; and how to share their story with people they trust. Kathy Gravel, a social worker for 20 years on our brain injury rehab team, spearheaded the project. “Finally, something for me!” is how one boy reacted to being asked to participate in a focus group used in the SibKit’s development.

BLOOM: Why is there a need for this booklet?

Kathy Gravel: Currently there isn’t a resource like this specifically for brothers and sisters of a child with an acquired brain injury. For these guys, it’s a traumatic, horrifying event. Suddenly their brother or sister is hospitalized with an injury that may be life-threatening, and they don’t know if they’re going to live, or how different they’re going to be.

They may not be onsite when their sibling is in acute-care, and they may feel distressed. Research, and our professional experience, tells us that siblings very much want to be included, so we have be creative to help them understand what’s going on. Without accurate, age-appropriate information, siblings can imagine the worst, and feel left out. We want to empower siblings and say ‘we’re not just looking at what’s challenging, here are some things you can do about it.’

BLOOM: The booklet is a combination of information and activities.

Kathy Gravel: We certainly wanted it to be educational, but also to be engaging and have those interactive components. We want it to help kids develop their own narrative for what this time was like for them, and to be something they can go back to over the years to revisit.

BLOOM: One section is about the therapists here and includes a scavenger hunt where kids have to learn fun facts about our staff. Why is that important?

Kathy Gravel: We want them to be part of our family-team process, so they feel like collaborators. And a scavenger hunt is a playful way to help them understand what’s going on. Let’s say a sister is staying during the week with an aunt, because her parents are here at the hospital. She can know the names of the sibling’s therapists and teacher, so she doesn’t feel left out.

BLOOM: The next section is about the brain, how different parts work, and what changes happen when they’re injured. There’s an activity where siblings have to think about what’s the same, and what’s different, in their brother or sister from pre-injury.

Kathy Gravel: It helps with understanding and expressing their story and making meaning of it. It’s a hopeful exercise, in that it not only looks at what’s different, but how they can be supportive of their siblings’ challenges.

BLOOM: I noticed there are a lot of tips sprinkled through the book.

Kathy Gravel: In particularly sensitive areas, we wanted to give siblings a cue that they may want their parent, or another caring, trusted person, to help them through it. There are age-range suggestions, as the sections can be used differently at different developmental stages. The content goes pretty deep. It’s not a light skim. We wanted to be sensitive to the unique values and wishes of a family, and give suggestions on how they can explore a section together.

BLOOM: I guess the parents would read the SibKit first?

Kathy Gravel: We will show it to parents and encourage them to review it, with support from our team if they wish, and introduce it to their other children.

BLOOM: Another section encourages siblings to write down, and draw about, their story about the brain injury, and decide who they want to tell. Why is that necessary?

Kathy Gravel: We wanted to honour their privacy and give suggestions for things they can say to people at school, or on the playground, who may ask questions. This is all brand new for them. They may feel kind of lost and we wanted to support them with scripts they could try. They’re going to become advocates for their brother or sister, and educators of themselves and their friends and community.

One of the suggestions is how to say ‘I’m not comfortable discussing this at this time’ in a more child-friendly way. When they do want to explain things to friends we wanted them to know where the brain injury is, and what it means, and to have the language.

BLOOM: How does the invisible nature of brain injury affect siblings?

Kathy Gravel: It’s common for our clients to have a good physical recovery, but still have significant emotional, academic, behavioural, cognitive and social challenges. You may be able to look at the person with a brain injury and not see the challenges. But the person is forever changed, and those changes aren’t invisible to the family or close friends.

It can be really hurtful when friends or teachers or people in the community don’t validate that. It can interfere with the grief and adjustment process if the sibling knows in their gut that things aren’t fine, but people are talking about how good their brother or sister looks. We’re educating siblings and families that invisible disability is real, and that they need tools for coping with it.

BLOOM: Another section of the booklet is about feelings. What are common feelings in siblings?

Kathy Gravel: Fear, horror, shame and guilt; incredible anger; depression, loneliness, resentment. Isolation. Surprise and shock. Kids can also be supported towards feeling hope, and acceptance and empowerment. 

I always remember a little guy whose sister was taken out in the middle of the night in an ambulance. He said he told God ‘If she lives, I’ll never have another argument with her again.’ She survived, and then he felt this pressure that he could never disagree with her, or something bad would happen again.

BLOOM: Siblings in the book are encouraged to talk to their parents, or someone they trust. But what if the parents are barely coping with their injured child’s needs?

Kathy Gravel: That’s common, and siblings feel like they suddenly lose their parents. They lose the level of involvement and attachment they had with their parents before the injury. We can help with that by arranging for another caregiver to bring the sibling in—after school or on a holiday. They can participate and observe and meet the therapists. We can also sit down and go through the SibKit with them. Because some families are so far away, we can also do phone consultations. So we could go through a bit of the SibKit over the phone.

BLOOM: There’s a section about sibling self-care in the booklet. They can use a weekly planner and post badges of things they’ve done to be kind to themselves. What are some of those badges?

Kathy Gravel: Reading, taking a walk, drawing your feelings, deep breaths, listing reasons why you’re proud of yourself, drawing a picture of a happy feeling, talking to someone you trust about your feelings.

Self-care is something siblings will have to do for their whole lives, and this is teaching coping skills and resilience. For all of us who take care of somebody who is going through traumatic brain injury, it can happen that we forget to take care of ourselves. We want to give them permission to do that.

My mom had a traumatic brain injury before I was born, and I know this stuff didn’t happen for me. So I’m more empathetic to what a young person may feel in terms of confusion, or worry about what’s going on, and ‘I’m just a kid—what can I do?’ I imagine and hope this will make a difference. It can also be modified for sons and daughters of adults who have brain injury, and for siblings whose brother or sister have other diagnoses.

BLOOM: How will the book be distributed?

Kathy Gravel:  Thomson Rogers has offered to print 500 copies that will be delivered to families on the unit. They will also provide us with a digital tool, so it will be accessible on Holland Bloorview’s website to anyone in the world. We will be asking for feedback on what’s good about the booklet and how we can improve. I’ve always said I want it to be online, to be free, to be generated by what research told us to do, and to be co-created with clients and families.

SibKit was developed with funding from Holland Bloorview’s Centre for Leadership.