Managing Type 1 Diabetes (T1D) is challenging because patients are usually diagnosed at an early age, and it requires lifelong daily treatment, such as checking blood sugar, carb counting, and doing insulin injections. For children, T1D management is even more challenging due to their lack of ability to practice self-care, and parents need to help them until they become fully independent. Therefore, throughout the children’s gradual transition toward their independence, it is important that parents shift and share care tasks so that the children could effectively carry out self-care when they become fully independent. 

Patient independence has been a focus of HCI and medical studies, and prior studies have shown how patients and their caregivers collaborate in everyday life to achieve patients’ self-management. In pediatric care, children gain independence in illness management by parents educating and transferring skills to their child. 

However, the practice of transferring care from parents to children is complicated and how they collaborate while the children become more independent is not well studied in the literature.

Therefore, our study aims to investigate how children and parents collaborate to manage T1D and examine how the children become more independent in their self-management through the support of their parents. In this study, we aim to 

1) understand the challenges that they faced

2) identify the strategies parents developed

3) provide design implications for technologies supporting their collaboration

To realize this goal, we conducted semi-structured interviews with pairs of children and their parental caregivers (N=41). 

For each child-caregiver pair, the interview sessions lasted about an hour, and the child and the parent were interviewed separately. A total of 20 pairs participated and the children were between 6 to 12 years old.

For the child interview, we used six scenarios (examples shown right) about children’s diabetes management so that children could better recall their own experiences. After the interview, we conducted thematic analysis on the transcripts.

Our findings showed that two main factors are crucial for children's transition towards independence in their illness management: knowledge of illness management and motivation to engage in self-care. 

Based on these two factors, we identified the four types of child’s collaboration in illness management. For each collaboration type, we analyzed their challenges and parental strategies. 

1. Dependent Type

First, the children who were dependent in collaboration were usually younger children who had difficulties with understanding diabetes management or the importance of self-care due to their limited cognitive skills. For the transition from the dependent to the independent type, parents taught urgent parts of self-care skills such as reaching out for help and emphasized the importance of self-care to their child.  

2. Resistant Type

Second, the children who were resistant passively collaborated with their parents, and often faced conflicts with their parents. For the transition from the resistant to the independent type, parents gave rewards, involved their child in the decision-making process, and created a comfortable environment. 

3. Eager Type

Third, for the children who were eager to collaborate, their parents had challenges if they were anxious about their child engaging in self-care too quickly. For the transition from the eager to the independent type, parents quickly learned about T1D and educated their child with the help of health professionals. 

4. Independent Type

Lastly, the children who were independent in collaboration sometimes faced emotional struggles when they did not feel confident about self-care. For maintaining the independent type, parents supported their child to feel safe while doing self-care and adjusted the child’s engagement level. 

Moreover, these factors can determine whether the collaboration is child-initiated or parent-initiated. 

The ‘child-initiated collaboration’ was sparked when children were more proactive in learning about T1D management. This often facilitated the child’s rapid transition into independence and led to successful collaboration between the parents and their child. 

On the other hand, ‘parent-initiated collaboration’ was sparked when children were slow in gaining motivation and relatively passive in their cooperation.

Based on our study insights, we suggest three main design implications for technologies to support child-parent collaboration in chronic illness management. 

• First, identifying the child’s knowledge and motivation levels to support children with different levels of knowledge and motivation. 

• Second, developing strategies for child-initiated or parent-initiated T1D management to support children’s interest and recommend strategies that should be implemented first. 

• Third, adjusting the child-parent involvement level to ensure children are not overburdened and feel confident with self-care. 

Here are some examples of design implications supporting child-initiated and parent-initiated collaboration. 

For child-initiated collaboration, diabetes education tools can be designed to support what child wants to learn or know about T1D, and those education tools can be also designed to invite other caregivers and family members alongside with children especially when children are newly diagnosed. 

For parent-initiated collaboration, a system could recommend parental interventions and strategies based on child’s knowledge and motivation level, while prioritizing strategies based on the urgency of the content (e.g., teaching children how to reach out for help).