The MAID Activity Book for Children
News & Updates | January 20, 2023 | Dying With Dignity Canada
The Canadian Virtual Hospice (CVH) provides support and personalized information about advanced illness, palliative care, loss and grief, to people living with illness, family members, people working in health care, educators, and researchers. This includes resources for young people and their families to talk about illness, dying and death. In 2022, CVH created a MAID Activity Book to help children think about and process a medically assisted death by someone in their life. We interviewed the folks at the CVH about this new resource for children.
Why was the MAID Activity Book for children developed?
This resource and the other ones developed for children came out of a need for tools to help children and their families talk together about serious illness, death, dying and grief. There is an instinct to protect children from topics that may seem scary, such as dying and death, but that protection often leads to isolation, anxiety, fear and regret for both kids and their parents. Adults often feel unsure or anxious about what to say, so we wanted to give them the tools to walk through conversations about illness, grief and dying.
Me and my illness is for kids who are living with a serious illness themselves, My life, their illness helps kids think about how someone else’s illness is affecting their life, and now we have the MAID Activity Book. The intention is that families read the My life, their illness book first, and then use the MAID Activity Book once there has been a foundation of understanding created, including a vocabulary to talk about illness, treatments, worries and feelings.
How was it developed?
One of the authors has an academic and clinical background in child development and family systems, and she saw a need for this resource. It was developed through her experience and with the help of many expert clinicians to review and refine the content. This included child life specialists with expertise in child development and therapeutic play in the context of illness and grief, as well as grief counsellors, psychotherapists, palliative care clinicians, a bereaved parent, two children, a working group arranged by CVH and some folks at Dying With Dignity Canada.
How do children process information about death, dying and grief?
Just like adults, every child will grieve differently. However, children are much more concrete, so they need information to be clear and specific – the reason we avoid euphemisms when talking about death. Children also process information in chunks, and they will let us know when they have maxed out or need time to process the information they have received, by shifting their focus. It is also common for children to ask the same question several times as they make sense of complex information, and it’s important to come back to the conversations so they can piece all the information together over time. Receiving all the information at once can be overwhelming.
We know that children pick up on much more than we think they have – this can be through what they overhear or what they sense – and without accurate information, they will fill in the blanks with their own imagination. Our instinct is to try and protect kids when we think the real information is too scary, but the truth is, the absence of information is much scarier. Having a conversation about someone dying or that someone has died offers children some comfort because it lets them know that they are not alone. Even if you feel like the information will not be reassuring, your presence and openness and willingness to feel the feelings with them is reassuring. As well, these conversations often give adults a chance to clarify children’s misconceptions with accurate information. Most parents want their children to be able to ask them anything and talk about anything that is concerning them. When we can provide age-appropriate information about hard things to talk about, we are giving them the message that it is OK to talk and share, even when things are sad and upsetting.
How do you recommend families use the MAID Activity Book?
We encourage adults to read through both books first: My life, Their Illness and the MAID Activity Book. That way they will not be caught off-guard when they look at it with a child, and can prepare themselves and even possibly practice saying some things out loud. Plan for multiple conversations and take time to review the information.
It’s important to start with the content discussed in the My life, their illness book first to help children understand the illness their loved one has, and what are the things that have been tried already to help them feel better.
If the child is not interested or if there is not enough time to go through the books together, adults can use the activity books as guides to help them plan and have conversations about the person’s illness or condition, treatments, as well as worries and feelings that the child may have. This resource may not be well-suited for every family; in that case it can still be used to find conversation starters or helpful activities to engage the child over time.
It is helpful to first focus on what they understand so far so that you can correct misunderstandings or misinformation along the way. A good starting point can be something like, “I need to talk with you about [the person’s name] and what’s going on with their health/illness/body. It would help me know where to start if I had a better idea of what you know already, can you tell me about that?”
If a child is reluctant to talk about the person who is ill, that’s okay. Let them know that they don’t have to talk if they don’t feel ready or comfortable. You can reassure them that you will be there to talk or to listen and try to find answers to their questions, whenever they are ready. In the meantime, let them know that there are a few especially important things you really want them to know:
- You did not cause this. It is not your fault.
- You cannot catch this. It is not contagious.
- It’s not your job to make this better — the illness or people’s grief.
(*Note: these points are 3 of the “6 C’s” that are some of the most common concerns that children have when someone has a serious illness. For more information about addressing these concerns, please see the resource Talking to kids about serious illness.)
Sometimes hearing those 3 things brings a sigh of relief and can lead to more conversation. However, if a child is still reluctant to hear more, you can reassure them that you will check in with them another time soon.
It’s important to underscore that this is not about convincing children that MAID is a good idea — they don’t have to agree with it. Instead, it’s about acknowledging that this is happening around them. We want them to know that it’s okay to talk about it and it’s okay to wrestle with it. Protecting children from conversations about death and dying isolates them and leaves them to pick up the pieces when they are able to confront it themselves, but talking about it means that we can support them through it and help them know that they’re not alone. It’s also important to know that you are not alone. Talk to the health care team and ask to talk with someone who has experience and expertise helping children when someone close to them is dying.
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