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It’s Like an Educated Guessing Game: Parents’ Strategies for Collaborative Diabetes Management with Their Children

Yoon Jeong Cha • Alice Wou • Arpita Saxena

Joyce Lee • Mark Newman • Sun Young Park

University of Michigan

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Background | Type 1 Diabetes (T1D)

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Background | The term ‘risk’ in our study

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Definition of the term ‘risk’ in this study

Risky health situations due to children’s too high or too low blood sugar levels, which could potentially result in fatal conditions

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Related Work

Supporting parents’ caregiving tasks for children’s illness management through technological supports (e.g., Seo et al., 2019; Shin et al., 2022).
Improving communication, self-care strategies, or self-monitoring of adolescent patients (e.g., Froisland et al., 2012; Holtz et al., 2019; Raj et al., 2019; Hong et al., 2020; Shin and Holtz, 2020)
Illness management as a family unit through the collaboration of family members; family informatics (e.g., Pina et al., 2020; Yamashita et al., 2018)

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How risk could be better handled for the parents of children with T1D?

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Goal & Contribution

Four types of parental strategies for managing T1D risks
Importance of developing parental strategies collaboratively with children

Knowledge about the cause of risk
Predictability of the occurrence of risk

Design implications for collaborative technologies that support parents in better planning for contingencies and identifying unknown causes of risks

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Investigate how parents manage potential risk to children’s health

& identify how they collaboratively manage it with children

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Method

Participants

Total of 20 child-parent pairs (N=41)
Children: 6-12 years old (Mean=9.6 years)
Average years of T1D diagnosis: 3.8 years

Semi-structured interviews

60-80 minutes per pair
Thematic analysis on the transcripts

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Findings | Two Factors of Parental Strategies for Managing Risks

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Cause of Risk

Known vs Unknown

Occurrence of Risk

Predictable vs Unpredictable

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Findings | Four Types of Parental Strategies

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		Cause of Risk
		Known	Unknown
Occurrence of Risk	Predict-able	An educated guessing game	Experimentation
Occurrence of Risk	Unpred-ictable	Contingency planning	Reaching out for help

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Strategy | An educated guessing game

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Feeling fairly confident and comfortable with managing children’s T1D
Making informed decisions based on prior knowledge and research
Constantly updating knowledge as they cannot be perfect

“We’re never going to be perfect... So yeah, we do our best in educating ourselves

and calculating things, and researching stuff and being knowledgeable,

but when it comes down to it, it’s an educated guessing game.” (P5)

		Cause of Risk
		Known	Unknown
Occurrence of Risk	Predictable	An educated guessing game	Experimentation
Occurrence of Risk	Unpredictable	Contingency planning	Reaching out for help

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Strategy | Contingency planning

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Children easily influenced by situational factors, or simply changing their mind
Developing collaborative contingency plans such as planning meals and activities
Discussing proactively and making shared decisions

		Cause of Risk
		Known	Unknown
Occurrence of Risk	Predictable	An educated guessing game	Experimentation
Occurrence of Risk	Unpredictable	Contingency planning	Reaching out for help

“We asked him in the morning if he wants that or if he wants something else with his food,

his breakfast. Then he chose and said, ‘Mommy I want the apple juice or I want that.’” (P6)

Even though the parents were already familiar with the causes of risk, the occurrence of risk was sometimes unpredictable.

This was because children’s activities or diets were easily influenced by situational or external factors, or they simply changed their minds without telling their parents.

Thus, the parents would sometimes have difficulties adjusting the blood sugar levels before children’s activities, such as exercising.

To lessen these unpredictable risks, parents developed collaborative contingency plans, such as planning meals and activities with children.

This involved parents proactively asking children about what activities they wanted to do or what they wanted to eat and making shared decisions.

For instance, P6 confirmed with her child what and how much he wanted to eat. P6 said,

“We asked him in the morning if he wants that or if he wants something else with his food, his breakfast. Then he chose and said, ‘Mommy I want the apple juice or I want that.’” (P6)

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Strategy | Experimentation

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Recognizing general patterns, but not knowing the exact cause of the risk
Various experimentations: restricting choices, making adjustments, etc.
Several rounds of experimentation to seek for better solution

		Cause of Risk
		Known	Unknown
Occurrence of Risk	Predictable	An educated guessing game	Experimentation
Occurrence of Risk	Unpredictable	Contingency planning	Reaching out for help

“We had to test him like every 20 or 30 minutes. It took us a couple of weeks.

We had to stop during his practice, check where he was, and adjust.

And then after a couple of weeks of doing that, we started to see patterns..” (P17)

Sometimes, parents could predict risk based on their general knowledge of diabetes or by recognizing the patterns in blood sugar levels.

However, they didn’t have enough knowledge to identify the specific causes of the blood sugar change.

To deal with this uncertainty, parents tried various experimentations such as restricting choices or making small adjustments until they gained more knowledge.

Sometimes, they conducted several rounds of experimentations to understand a whole picture and seek a better solution.

P17 explained how difficult it was for figuring out the right treatment for child playing hockey. She said,

“We had to test him like every 20 or 30 minutes. It took us a couple of weeks. We had to stop during his practice, check where he was, and adjust. And then after a couple of weeks of doing that, we started to see patterns..” (P17)

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Strategy | Reaching out for help

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No idea about the potential causes of risk, thus unable to predict the risk at all
Common for children in the early stages of T1D diagnosis
Consulting with the health professionals or seeking help from the online communities

		Cause of Risk
		Known	Unknown
Occurrence of Risk	Predictable	An educated guessing game	Experimentation
Occurrence of Risk	Unpredictable	Contingency planning	Reaching out for help

“I belong to three different Type 1 diabetic parent Facebook groups and

I just sent a message out on each one and said, ‘Any of you that have middle schoolers who are in cross country, would you be willing to share with me how you handle blood sugars during their practices..?’ I got great feedback from a lot of them.” (P20)

Lastly, some parents had no idea about the causes of risk, thus unable to predict the risk at all.

This was especially common for children in the early stages of T1D diagnosis.

To overcome this challenge, a lot of parents consulted with health professionals and clinicians.

But some of them still struggled due to individual variability and contextual factors.

Thus, some parents also reached out for advice from online communities.

For example, C20 did cross country, and the child often went low during the workouts in unpredictable ways.

So she asked to several Facebook groups. She said,

“I belong to three different Type 1 diabetic parent Facebook groups and I just sent a message out on each one and said, ‘Any of you that have middle schoolers who are in cross country, would you be willing to share with me how you handle blood sugars during their practices..?’ I got great feedback from a lot of them.” (P20)

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Discussion | Sensemaking in collaborative context

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Making sense of risk for children is challenging because children change their minds in unexpected ways.
Contingency planning and experimentation strategies require extensive collaboration between children and their parents.
Parents try to do sensemaking of potential risk in advance for contingent risk.
Parent-child collaboration is crucial for the ultimate step: educated guessing game

Our findings show making sense of risk for children is challenging because children are easily influenced by situations and change their minds in unexpected ways. Thus, collaboration with their children is necessary and crucial for parents.

In particular, contingency planning and experimentation strategies require extensive collaboration between children and their parents, as those strategies cannot be carried out by parents themselves but need their children’s involvement for planning for contingent risks or discovering unidentified causes.

Thus, parent-child collaboration was crucial for performing the ultimate step: the ‘educated guessing game’.

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Our study findings show how parents tried to explore unknown causes, anticipate risks, and develop plans to mitigate the impacts of unforeseen risks.

Through these strategies, we found that parents tried to explore unknown causes, anticipate risks, and develop plans to mitigate the impacts of unforeseen risks

In our study, we observed that parents engaged in the habitual mode as they became more knowledgeable about risks. By performing an ‘educated guessing game’ described by our participants, they were better aware of the causes and the occurrences of the risks. When they became more comfortable with T1D management, they eventually were better prepared for contingent risks based on their knowledge of the factors that impact blood sugar.

During experimentation, parents mostly relied on their own (general) reasoning to determine how the causal factors impacted blood sugar. This is because children may have difculties understanding the mechanisms at play and the reasoning required. Rather, children were involved more as proxies because carrying out treatment requires the actual involvement of the child. Children’s engagement throughout the experimentation was especially crucial because oftentimes, the process involved several rounds of trial-and-error to fnd out the optimal action plan.

The majority of sensemaking literature focuses on past events because sensemaking largely involves refection on past experiences. Our study analysis also indicates that parents are heavily engaged in FCR mode in predicting certain risks that may happen in the future and developing contingency plans together with their child, even though they are not completely sure when those risks will happen. Developing plans for contingencies collaboratively with their children is essential for parents to deal with unpredictable occurrences of risks, even when the causal factors are known because children are often unpredictable and easily infuenced.

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Discussion | Collaborative experimentation

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In the early diagnosis, parents try to lessen risk by restrictions.
As parents become more knowledgeable, they try to further explore the unknown causes.
Parents involve their child: collaborative experimentation
Children gradually become more involved as they got more independent.

In the early diagnosis, parents often try to lessen the risk by restricting children’s activities and foods to avoid the causes of risks.

However, as they become more knowledgeable, they try to further explore the unknown causes by trying out new foods or monitoring activities.

This requires parents to involve their child in experimentation, leading to ‘collaborative experimentation’

Most children start with a lower level of involvement as a proxy because of their young age and fewer self-care skills. But they gradually become more involved in understanding how the experimentation works.

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Recently, an increasing body of literature highlights how ‘self-experimentation’ can help patients be more knowledgeable about their illness. Prior studies on self-experimentation focused on the individual work of carrying out experiments. Our study extends these investigations by examining how parents do so in a collaborative setting, as parents need to conduct experiments with their children to derive an optimal treatment.

We also noticed that parents were more promotion-focused as they became more knowledgeable about their children. In the beginning, it was challenging for parents to explore new causes due to a lack of knowledge about the regimen and their child’s uniqueness. However, as they became more skilled through the trial-and-error processes, parents were better prepared to leverage their additional knowledge to try new methods.

Still, they were cautious about changing things too much because it could increase the complexity of interpretation. That is, exploring more factors by experimentation could potentially lead to more risk if they were not ready to interpret situations well or if other factors could add complexity. Thus, when parents perform experimentation to identify unknown factors, they also try to avoid making too many changes because it could be harmful to the child. Thus, balancing between exploratory and restrictive strategies was also crucial for maintaining children’s health.

As children are generally too young to carry out their own experiments, they were mostly involved in these experiments as proxies, by following their parents’ instructions about what to do in the practice. However, as they became more independent, they were more aware of what was happening in the experimentation and recognized that they should support their parents.

Most of the children started with a lower level of involvement as a proxy in experimentation because of their young age and fewer self-care skills. This suggests that as children become more independent through greater knowledge and parental help, they will gradually become more involved in understanding how the experimentation is conducted and actively seek better action plans.

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Discussion | Design Implications for Collaborative Health Tech

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Tools for children developing contingency plans with their parents

Recommending possible procedures for collaborative experimentations

In summary, our study suggests that collaborative health technologies can be designed to support parents to do better sensemaking by planning for contingencies and identifying unknown causes of risks together with their children.

For instance, systems could support children developing contingency plans with their parents and provide recommendations for possible procedures for collaborative experimentations.

How much children are involved should be also carefully designed considering their knowledge and self-care skills.

For more detailed information, please refer to our paper.

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Sharing plans with other caregivers, system providing personalized suggestions based on possible risks

Educational tools for children to develop contingent plans for possible risk situations with their parents

System providing suggestions by comparing the child’s data with that of other children in similar condition (age, personality, etc.)

Recommending age-appropriate experiments based on children’s blood sugar patterns

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This can be achieved by providing guidelines for developing new contingency plans and recommending possible procedures for collaborative experimentation.

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It’s Like an Educated Guessing Game: Parents’ Strategies for Collaborative Diabetes Management with Their Children

Key Takeaways

Parents conduct various strategies for minimizing children’s risk in managing T1D, impacted by two factors: knowledge of the cause of risk and predictability of the occurrence of risk.
Collaborative health technologies could provide guidelines for developing new contingency plans and recommending possible procedures for collaborative experimentations.

Acknowledgements

Many thanks to our participants, reviewers, and the pediatrics diabetes team at the C.S. Mott Children’s Hospital at the University of Michigan who helped with developing the interviews and recruiting participants. [Icons are from flaticon]

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Yoon Jeong Cha

yjcha@umich.edu