Treasured Moments
Design of a Tool to support Children in Coping with Personal Loss
This project addresses a critical need in palliative care by developing a product that supports children in coping with the loss of a parent. Specifically targeting families with young children, it seeks to provide emotional support during the challenging times of a parent's serious illness and eventual passing, fostering family bonding and memory-making through engaging activities. The primary objective is to help parents and children support each other by creating and sharing personal stories. Through play and storytelling, the project aims to help families build a re-tellable, constant story that can serve as a source of comfort and continuity throughout the grieving process.
The research phase uncovered several critical insights. First, parents often struggle to talk to their children about the illness due to uncertainty about what to say and how to start the conversation. Open communication in age-appropriate chunks is essential for helping children process their feelings. Second, children and parents may feel lonely and isolated during this period. Maintaining family bonds and a sense of support is crucial. Third, children express complex emotions through play rather than words. Providing a safe space for this expression is vital for their coping process. Fourth, children need honesty about the situation to start making sense of their experiences. Encouraging questions and honest answers helps them find meaning. Finally, close physical presence and comfort are necessary for children to feel secure and supported.
The final product, "Treasured Moments," is designed to help families create and preserve memories together. It not only provides tangible records of memories but also creates a lasting legacy that can help children and their families cope with loss through shared storytelling and play. It aims to use the power of personal connection in the face of grief, offering a flexible approach to support families during one of the most challenging times in their lives.
Before going any further, lets meet Zoe, a young girl whose story we will follow throughout this project
This is Zoe. Zoe is now 4 years old. She likes to play with her ball. She also enjoys playing with her blocks and being told stories every night before bed. She plays with her mom, dad and also some friends from school.
Six months ago, Zoe’s mum was diagnosed with stage 3 lung cancer. Her health was never stable and had lots of ups and downs. Some days she was doing fine and Zoe is very happy that her mom can play with her. Other days she had difficulty getting out of bed and could not pick Zoe up from school.
Two months ago, Zoe’s mum's condition began to worsen. She could no longer get out of bed. She spent most of her day taking rest.Zoe and her mom used to play together, read together and cuddle together but now she didn’t do those things with Zoe. Zoe’s dad used to ask her to be more quiet when her mom was asleep. All this made Zoe feel a little sad and angry. Zoe wanted her mum to be all better again.
One day Zoe’s mum was feeling very ill and was having trouble breathing, she went to the hospital. Zoe was very scared. She didn’t like the hospital. The doctors said that medication was not having the effect that they would have liked and the cancer was spreading to other parts of the body. Her doctor said that there was no way to cure it and suggested that they look at palliative care. Zoe’s parents were heartbroken and made the decision to make the most of the time they had left together.
Zoe did not really understand what was going on. She did not know why everyone was crying a lot more. She was mad and confused but nobody told Zoe what was going on. Her mom didn’t read her bedtime stories any more, even her dad didn’t give her as many hugs. Dad was busy all the time now and Zoe felt like she was by herself.
Zoe’s story is not an uncommon one. The project at hand addresses a critical need within the sensitive domain of palliative care, focusing specifically on supporting children like Zoe, in coping with losing.
The emotional turmoil experienced by these children, dealing with a seriously ill parent, sibling or close-by-relative in palliative care, can lead to feelings of depression, anger, and anxiety. It's crucial to recognize that during this challenging period, these children not only face emotional struggles but also lose a vital source of compassion.
The Problem
When a parent faces a serious illness and receives care at palliative care centers, the predominant focus often revolves around addressing the needs of the ill parent, highlighting a systemic issue within the healthcare system that is primarily patient-focused. This approach creates a blind spot for the families and caregivers, casting a shadow over the children of seriously ill parents and sometimes perceiving them as burdens rather than integral members of the care unit. This blind spot results in a lack of awareness, knowledge, and developed skills surrounding the needs of these children, leading to a deficiency in support services.It's imperative to recognize that when a patient is involved, their families are equally involved and should be treated as a cohesive system to ensure comprehensive care. Excluding any part of this system, risks neglecting essential needs.Furthermore, children have unique needs and perceive situations differently from one another, making it challenging to devise a rigid, one-size-fits-all solution. This complexity underscores the necessity for a flexible and tailored support system to effectively address the diverse emotional and psychological needs of children in such circumstances.
There was a lot that Zoe was going through. It was an increasingly difficult time for her. She was feeling so emotional but she did not know what to say. Instead, she would throw her toys around and scream and cry. She would pretend that her doll was her and enact her day. Her parents saw that this was all really affecting her but they did not know how to communicate to Zoe about what was going on. They were having a very tough time as well.
Then, Zoe’s mom started getting very very ill. She could barely get out of bed. She was always asleep. She needed help with everything. Zoe had never seen her mom like this.
Zoe’s parents wanted to tell Zoe something but they did not know what to say or what Zoe needed at the time.
Themes related to Grief
Research Insights and Needs
They are represented as first person point of view as expressed by the children
Hear me out
Be curious, open, get in touch with your inner child when you talk to your child
The reluctance to talk to children about the illness is sometimes because parents do not know what to say, and do not know how to start the conversation.
“We never talked about it. It was more like if we dont talk about it it was not an issue anymore”- Widowed young parent
However, evidence suggests that it is generally optimal to tell children about their parent’s illness Ideally these conversations need to be in ‘small chunks’, delivering manageable, age-appropriate amounts of information which become more detailed as the illness progresses. What young children, like Zoe need is to be told about their parent’s illness and how their parents are feeling as well.
I am not alone
“At school you see other mothers coming, you feel alone. It keeps coming back, those thoughts.” - Lost their mother in childhood
Times like this are particularly hard on both children and parents. They can lead to feelings of loneliness in both the children and the parent. As a family tries to cope with a significant loss, the dynamics of the family can change and it can be an unsettling time for children. This period may manifest in certain behaviours, such as withdrawal, and certain feelings, such as isolation.
It is important to draw focus to the fact that families go through the entire process together . They always have each other’s support in this journey and their bond plays a big role in their coping journey.
“Whether it's in her heart, your memory or for real, I think within, the energy will always be with her......That is a very important factor in her healing process.” - Claudia Hass, Drama therapist
Reassurance and presence of family and friends
I need to express
Emotions at this point can be confusing, expressing this can be difficult
“There are a lot of feelings, a lot of emotions. To put a word on that within the sea of I don't know how many emotions there are. Chaos.” - Claudia Hass, Drama Therapist
Children Zoe’s age feel many things at a time like this. They feel angry, sad, confused and worried. To find a way to express all these complex emotions can be a challenge. Studies find that the more you talk about death—and what it means—the less scared and confused your child may be when it happens to a family member. Open communication and giving children a safe space to express how they feel is very important in the coping process.
“I knew if I show my losses to my children it would affect them. I knew I had to put aside my losses and be supportive for the children.”- Widowed young parent
With all of these complex emotions, a child like Zoe struggles to express these emotions. A young child Zoe’s age does not generally use words to express but rather expresses through play.
“For children, fantasy and imagination, that's their world. That's where you can relate the most easy.”- Claudia Hass, Drama Therapist
This method of expressing gives them a safe space to process their emotions and the situation. Children use play to reduce anxiety and understand traumatic experiences. They may recreate an unpleasant experience such as an automobile accident over and over to assimilate it and diminish the intensity of feeling.
“Storytelling is a very safe way because you can identify with the characters but you don't have to talk about your own process. You're in control and you can decide whether or not, or at which point point you want to tell your own story. So, it's a very safe.”- Claudia Hass, Drama Therapist
I play to process
Processing through a language children are familiar with
I need to understand for myself
Understanding the meaning of death, what this means for them, their families, have a space to ask questions
The meaning of death is complex and is something for everyone to find their individual meaning of. While this sounds like something far too much for a young child like Zoe, meaning finding is an important part of coping. For children this can start with being honest and giving them the space to ask questions.
“The most important thing is to be honest. So when you know it, you tell them because they feel when you are sad or grandma is going to be at home a lot” - Romy van den Booren, Netwerkcoördinator Integrale Kindzorg
Evidence suggests that it is generally optimal to tell children about their parent’s illness so that they can begin to make meaning from what is happening.
“It's important to be honest, but also ask, what do you think, what it is like to be dead? And maybe you can talk to them at that point to explain things that they don't know.” - Romy van den Booren, Netwerkcoördinator Integrale Kindzorg
I need your support
Physical comfort, getting back on your feet and memories and their importance
Physical comfort and emotional support throughout the coping journey are extremely important for children like Zoe. Children are sometimes unable to ask for the comfort and care that they need, but receiving that care is very important.
“I wasn’t able to ask for that comfort and care” - Lost their mother in childhood
Children require a close physical presence and comfort throughout the coping journey.
“When a parent is able to hug the children and touch the children. Give them comfort in that way. That's a significant factor I saw in loss and grief” - Claudia Hass, Drama Therapist
Ideally, children’s needs are met in a stable and supportive family, with the help of their usual networks such as school and community groups. Maintaining a constant in their life often ensures that they feel a sense of stability.
A few weeks later, Zoe’s mum’s health dipped even more and everyone was very sad. A few days later, she died. Everyone was heartbroken.
After Zoe’s mom died, Zoe’s dad had the very challenging task of telling Zoe what was happening. Zoe had already picked up that her mom was sick but she was not told that her mom was going to die.
Zoe’s dad spoke to Zoe and told her that her mother had died. Zoe did not fully understand what was happening. Zoe was confused. “How can we get her back?”, she asked, “Does it hurt?”
Confounded by the depth of Zoe’s questions, Zoe’s dad did his best to try and talk to her.
He told Zoe about the funeral and Zoe wanted to wear the coat her mum got her to it. She wanted to sing a song and draw something for her mother.
Children understand death differently from adults. They also process this information very differently.Even at different ages, children experience and understand death in different ways.
The Whole Journey
The journey of coping with loss is inherently marked by emotional highs and lows, reflecting the fluctuating health of the ill parent and the resulting impact on the family. Visualizing and understanding this complex journey is crucial, as it allows for the identification of key moments where support is most needed, and the type of intervention that will be most effective.
Design Goal
Design Drivers
Envisioned Scenario
Ideation & Concept Generation
The ideation process consisted of multiple rounds of brainstorming with the creation of several low fi prototypes. Finally three concepts were generated and these concepts were taken to an expert for a feedback and co-creation session. At the end of this co-creation session I had a final concept that I prototyped and tested.
The Concept
The concept detailed at the end of the co-creation session focused on allowing families to preserve the precious stories of their relationship and relive them through a boardgame.
Testing the Concept
A test with a family with two young children revealed that while it was an enjoyable process for a child about 8 years of age, a younger child would have liked to engage with something more lose and active. All the feedback from the test was taken into account and a final concept was designed.
Final Concept
The final concept is called 'Treasured Moments'. A way to capture the story of your relationship and reexperience those stories at any point in your life.
Packaged as a treasure chest, 'Treasured Moments’ is meant to convery that memories are your personal treasures.
The core of the concept lies in the creation of these memory tiles. A memory tile is meant to capture your memories and preserve them in a more tangible way
Each memory tile is a thick framed box with a transparent centre. The box can be freely opened and closed allowing the family to put pictures, postcards, letters, souvenirs, trinkets and the prompt cards in them.
But how do you know what to put inside? How do you capture your stories?
Through prompt cards. The chest comes with 16 prompt cards and some blank pieces of paper. These prompt cards have a small heading which is the prompt and space for the family to fill up together. These cards cover four broad topics reflecting on various different aspects of the parent and child’s relationship: cards about everyday things, cards for the parent to reflect, cards to remember things together and cards for the future. The cards for the future allows a parent to leave a letter for their child to discover in future like on their graduation or wedding for instance.
Filling in the memory tiles
Each memory tile is meant to reflect a certain aspect or story of the family’s relationship with each other. To fill in a memory tile, the family chooses one of the prompt cards, writes in it together and places it in the tile. They can also add to the tile, by finding pictures, postcards or trinkets that are associated with that memory or story. For instance, if the family took a memorable holiday they can put in ticket stubs, postcards and pictures from their trip along with a prompt card.The family can choose to fill in as many ever tiles as they would like to at a time. The tiles can always be added to or modified easily if they want to. Each tile is meant to be a framed encapsulation of a memory in their lives that they can look back at.
Now that you have these memories preserved, how can they be relived?
Two games have been designed as a part of this product to support the family in reliving the memories
'A walk down memory lane' : the boardgame
Stacking the memory tiles allows it to be transformed into a board game: ‘a walk through memory lane’. It lets the family organically revisit all the memory tiles and the memories in them.
Through a dice throw game, the family is incentivised to discuss the memories in each tile promoting a positive interaction with all the memories.
The scavenger hunt
The flags in the treasure chest allow the tiles to become a part of a scavenger hunt for the child. The child is given a little bingo board, it contains pictures of all the flags that they must find. The child goes around and finds these flags and memory tiles and brings them back to their parent.
The parent and child can then discuss the memories in the tile.
This game is envisioned to give the child more freedom and the chance for more fantasy play. It collects memories, reinforcing the idea of these memories being a treasure.
Let's go back to Zoe and reimagine her story with 'Treasured Moments'
One day Zoe’s mum was feeling very ill and was having trouble breathing, she went to the hospital. Zoe was very scared. She didn’t like the hospital.
The doctors said that medication was not having the effect that they would have liked and the cancer was spreading to other parts of the body. Her doctor said that there was no way to cure it and suggested that they look at palliative care. Zoe’s parents were heartbroken and made the decision to make the most of the time they had left together.
The psychologist that the family visited recommended ‘Treasured Moments’ to them. She said that it would allow them capture to the story of their relationship and stay connected to each other. Taking her advice, the family brought home the treasure chest shaped box.
Zoe was curious about the box and once they got home, the family sat together and opened it up. They saw some wooden tiles, a boardgame and some brightly coloured flags. Zoe really liked the flags.
Zoe’s father took out the instruction cards and read them out to the family. He told them that they could try to fill up the tiles with some of their memories together.
Zoe was excited to try it out. She liked playing with new toys.
Zoe sat down with her mom and picked out her favourite cards. She wanted to do the one about their holiday. The family had gone to Spain sometime back and Zoe loved the beach. Zoe started telling her mom about the sand and the shells on the beach and her mom wrote it down. Her mom also wrote down her favourite things from their trip. Zoe then wanted to draw a ball and colour it because they played with a ball at the beach. They both sat down and drew together.
They then went through some of the pictures they had taken together. Zoe loved doing this. She liked pointing at her favourite pictures and saying what she saw. Zoe picked out her favourite pictures to put in the tile. She had also picked up some seashells from the beach that she wanted to put in the tile. They also had some postcards from their trip and put all of it in the tile
Soon, they had filled four tiles with different memories. One morning, Zoe’s mom suggested they play a treasure hunt with the tiles. She hid them around the house and gave Zoe a board with all the flags to find. Zoe was thrilled and used her magnifying glass to find the hidden tiles.
When Zoe found a tile, she called out to her mom, who helped her reach it. They opened the tile and sang songs they liked together.
On the weekend, the whole family played the board game, sharing memories and laughing together.
Zoe’s mom couldn’t always get up to play with her. Some days she was too tired and was unable to get out of bed. Those days, Zoe would take a filled tile up to her bed and ask her to tell her their stories together. She would ask her mom to tell her about how she pet the cat outside their hotel in Spain or how she sang a song to her dad on his birthday.
Zoe’s mom would sit up on her bed, hold Zoe in her arms and tell her the stories from the tile and show her pictures.
A few weeks later, Zoe’s mum’s health dipped even more and everyone was very sad. A few days later, she died. Everyone was heartbroken.
Zoe’s dad spoke to Zoe and told her that her mother had died. Zoe did not fully understand what was happening. Zoe was confused. “How can we get her back?”, she asked, “Does it hurt?”
Confounded by the depth of Zoe’s questions, Zoe’s dad did his best to try and talk to her.
He told Zoe about the funeral and Zoe wanted to bring the memory tiles she made with her mother and sing a song that they sang together for her.
When they came back home Zoe held on to the tiles. She asked her father if they could play scavenger hunt again.
She went looking for the tiles and when she found one, she saw a picture of her mother holding her inside the tile.
She went back to her father and hugged him tight.
For the future
Partnering with the KIEZO Working Group
KIEZO children live in a family in which one of the parents has a serious chronic, life-threatening, life-shortening and/or incurable disease. The abbreviation KIEZO stands for Children of Seriously Ill Parents. The KIEZO target group has been brought to the attention by the KIEZO working group.
The KIEZO group has expressed a strong interest in taking this product into production. They have offered their assistance with marketing, translating the materials into Dutch, and distributing the product through their extensive network. This partnership is invaluable, providing the necessary support to bring the product to a broader audience.
The enthusiastic support from KIEZO is a significant validation of the product’s potential impact, reinforcing the belief that it can make a meaningful difference in the lives of those it touches.
Zoe’s mom had left behind a treasure chest of their memories. After her mom died, Zoe would go back to the treasure chest her mom and her used to play with. It was in her room, she would open it up and look inside. She would pick up a tile, look at it and hold it in her hands. Inside she saw a picture of her mom and her at the beach. She held the tile close to her and thought about her mom.
Every year on the anniversary of her death, Zoe and her dad now had a tradition. They would open up the treasure chest and set up the board game. They would take a walk through memory lane, remembering everything they did and laughing together. It was their way of celebrating Zoe’s mum and their memories together.
Many years into the future, Zoe was leaving for college. Right before she was about to leave, Zoe’s dad ran inside and got something for Zoe. It was a tile that Zoe’s mom had left for Zoe for the day she was leaving to college.
Zoe knew in her heart that her mom never left her side. She knew that she always wished her well and would always cheer her on in her own way. Zoe, smiled and said to herself, “I love you too, mom”.
