Background

There is gradual acquisition of type 1 diabetes self-care responsibility across childhood as youth mature and gain more independence from their family. Understanding the timing of diabetes self-care by youth can guide the tailoring of diabetes education and support programs.

Objective

To investigate parent-perceived responsibility for diabetes self-care tasks across childhood.

Methods

Parents/guardians of youth (ages 5–18 years) with type 1 diabetes reported parent involvement in diabetes management using the Diabetes Family Responsibility Questionnaire. Survey items were divided items into five domains: nutrition, monitoring, insulin dosing, communication, and health surveillance. Age-groups for analyses were 5–10 years (elementary school), 11–14 years (early adolescence), and 15–18 years (late adolescence). Demographic, diabetes management, and A1C data were collected at the time of survey completion.

Results

Youth (n = 148, 50% male) were a mean age of 12.9 ± 3.3 years, with a mean type 1 diabetes duration of 6.2 ± 3.6 years; 66% used insulin pump therapy, and the mean A1C was 8.4 ± 1.3%. Of the parents (84% mothers, 91% White), 83% were married, and 52% were college educated. Per parent report, less parental involvement was associated with older youth age (P <0.001). Across all age-groups, more overall parental involvement was related to lower A1C (P = 0.02). Youth self-care in the nutrition domain began in elementary school, whereas self-care in monitoring and insulin dosing began in early adolescence, and self-care with regard to communication started in late adolescence. Responsibility for health surveillance remained mainly under parent care throughout childhood and adolescence.

Conclusion

Providing education and support for youth during their acquisition of self-care tasks, especially those relating to nutrition, monitoring, and insulin dosing, may help to prevent glycemic deterioration later in childhood and adolescence.

Diabetes management during childhood and adolescence requires family support to ensure optimal growth and development and achievement of target glycemic control (1,2). Previous studies have highlighted the importance of family involvement in the management of type 1 diabetes, especially for young children (3,4). Given the crucial role of family involvement in type 1 diabetes management, diabetes care teams must provide education and support to both parents and youth, with anticipatory guidance related to increased acquisition of self-care tasks by children when appropriate (1).

Normative development during childhood and adolescence includes the gradual acquisition of more responsibility for self-care tasks such as personal hygiene. Similarly, children and adolescents with type 1 diabetes gradually acquire more skills and knowledge and assume more responsibility for their diabetes management as they grow older (5). This increase in self-care is often accompanied by a decrease in parental involvement during adolescence (69). However, failure to maintain a developmentally appropriate level of parent/family involvement in diabetes management tasks can lead to premature transfer of diabetes management tasks to the child, resulting in “diabetes burnout,” with its accompanying poor adherence and suboptimal glycemic control (2,10). Factors such as diabetes-specific family conflict, low education, or low access to resources might play a role in such premature transfer of responsibility (11,12). In addition, some youth may be forced to assume additional self-care responsibilities at a young age because of factors outside of the family’s control (e.g., no nurse in the child’s school) (11,13,14).

There is a range of normal childhood development and an understanding that youth generally acquire increasing maturity at different rates and ages, indicating a need to individualize the approach to diabetes management. Nonetheless, the developmental skills and expectations for type 1 diabetes self-care acquisition across childhood have been described in national and international diabetes guidelines (1,15) and reviews (5).

In this study, we sought to gain a better understanding of the general developmental timing for the acquisition of specific domains of diabetes self-care tasks across childhood and adolescence, as reported by the parents of youth with type 1 diabetes. Such information can help to inform diabetes care and education specialists, along with other members of the pediatric diabetes care team, in their efforts to provide timely training to pediatric patients as they grow and develop, as well as guidance to parents regarding the expected transition to self-care. We hypothesized that acquisition of responsibility for self-care tasks would vary among youth according to the complexity of tasks, with youth acquiring responsibility for less complex tasks (e.g., deciding what to eat) at earlier ages than more complex tasks (e.g., sick day management). In addition, we sought to assess the relationship between parental involvement in specific domains of diabetes management and A1C. We hypothesized that lower A1C would be associated with greater parental involvement in type 1 diabetes self-care across all domains.

Participants

Parents of children and adolescents with type 1 diabetes were recruited from a clinical diabetes center in Boston, MA. Parents were eligible to participate if they were fluent in English and their child had had type 1 diabetes for ≥6 months, was 5–17 years of age, and was attending kindergarten through twelfth grade in a Massachusetts public school. The center’s institutional review board approved the study protocol, and parents provided written informed consent before beginning any study procedures.

Procedures and Data Collection

Parents completed study questionnaires regarding child/family demographics and their child’s diabetes management, including the Diabetes Family Responsibility Questionnaire (DFRQ). After the study visit, a trained research assistant performed a systematic review of the child’s electronic health record to extract diabetes management data, including provider-reported frequency of blood glucose monitoring (BGM) and A1C level (measured in the clinical laboratory using a Diabetes Control and Complications Trial–standardized assay with a reference range of 4–6% [20–42 mmol/mol]) from the clinic appointment closest to the study visit. Most study visits occurred on the same day as a routine clinic appointment. All visits took place during a 2-month period in 2012.

Diabetes Family Responsibility Questionnaire

The DFRQ is a 19-item validated survey assessing parental involvement in various diabetes management tasks (16). Parents reported the responsibility for each diabetes management task using a three-point response scale: child mainly responsible (scored as 0), equal responsibility (scored as 1), or parent mainly responsible (scored as 2). The mean item scores were multiplied by 50 such that the total DFRQ score could range from 0 to 100, with higher scores indicating more parental involvement.

Data Analysis

For analyses, we categorized participants into three groups based on child age: 5–10 years (elementary school), 11–14 years (early adolescence), and 15–17 years (late adolescence). These age-groups correspond to developmental stages during which children and adolescents attain increasing independence across many general life skills (e.g., increasing independence in clothing and food choices, homework assignment completion) as well as diabetes self-management tasks.

We divided the items on the DFRQ into five care domains: nutrition, monitoring, insulin dosing, communication, and health surveillance (Table 1). Three items (remembering day of clinic appointment, checking expiration dates on medical supplies, and making doctor appointments) were not included in the domains because they are tasks for which parents are usually expected to maintain primary responsibility throughout childhood and adolescence. Indeed, across all age-groups, very few parents in our sample endorsed that their child shared responsibility for these tasks (with only one parent indicating that their child had primary responsibility). Thus, these three items had limited relevance to the assessment of diabetes self-care acquisition by children and adolescents. The five care domains had satisfactory internal consistency (Cronbach α: nutrition = 0.64, monitoring = 0.69, insulin dosing = 0.90, communication = 0.70, and health surveillance = 0.52). For each of the domains, we calculated the mean score of the items within the domain and then categorized responsibility for care tasks based on the mean domain score as follows: mean domain score <1 = child mainly responsible, mean score of 1 = equal responsibility, and mean score >1 = parent mainly responsible.

Table 1

Domains of Self-Care Based on DFRQ Items

DomainDFRQ Items
Nutrition 1. Deciding what to eat at meals or snacks
2. Deciding what to eat when family has meals out 
Monitoring 1. Noticing the early signs of a low blood glucose
2. Carrying some form of sugar in case of a low blood glucose
3. Remembering times when blood glucose should be checked 
Insulin dosing 1. Remembering to take insulin injections or boluses
2. Giving insulin injections or boluses
3. Taking more or less insulin according to results of blood glucose monitoring
4. Rotating injection sites or pump infusion sites
5. Making insulin and/or food adjustments for exercise 
Communication 1. Telling teachers about diabetes
2. Telling relatives about diabetes
3. Telling friends about diabetes
4. Explaining absences from school to teachers or other school personnel 
Health surveillance 1. Noticing differences in health, such as weight changes or signs of an infection
2. Giving extra attention to diabetes management on sick days 
DomainDFRQ Items
Nutrition 1. Deciding what to eat at meals or snacks
2. Deciding what to eat when family has meals out 
Monitoring 1. Noticing the early signs of a low blood glucose
2. Carrying some form of sugar in case of a low blood glucose
3. Remembering times when blood glucose should be checked 
Insulin dosing 1. Remembering to take insulin injections or boluses
2. Giving insulin injections or boluses
3. Taking more or less insulin according to results of blood glucose monitoring
4. Rotating injection sites or pump infusion sites
5. Making insulin and/or food adjustments for exercise 
Communication 1. Telling teachers about diabetes
2. Telling relatives about diabetes
3. Telling friends about diabetes
4. Explaining absences from school to teachers or other school personnel 
Health surveillance 1. Noticing differences in health, such as weight changes or signs of an infection
2. Giving extra attention to diabetes management on sick days 

All statistical procedures were performed using SAS, v. 9.4, statistical software (SAS Institute, Cary, NC). For continuous variables, mean ± SD, median, and range were calculated. For categorical variables, percentages were obtained. Differences among groups were assessed by ANOVA and χ2 tests. Spearman correlations and linear regression models assessed associations among A1C, demographic variables, and parental involvement in self-care domains. In the multivariable analyses, parental involvement was categorized into three levels as described above. For all analyses, P <0.05 was considered statistically significant. No adjustments were made for multiple comparisons because of the exploratory nature of the associations of developmental stages with performance of diabetes self-care tasks.

Participant Characteristics

Parent and youth characteristics are presented in Table 2. The majority of respondents were mothers, non-Hispanic White, and married or living with a partner. Distribution across age-groups was as follows: 26% elementary school, 43% early adolescence, and 32% late adolescence. There was slightly more insulin pump use in younger children, although the difference was not statistically significant. Daily insulin doses were higher in the adolescent groups compared with the elementary school group, as expected because of growth and likely pubertal development with older age. BGM frequency was highest in the elementary school group and lowest in the older adolescent group. A1C was highest among older adolescents and lowest among children in elementary school. Total score on the DFRQ was highest in parents of elementary school–aged children and lowest in those of older adolescents, indicating more parental involvement for younger children.

Table 2

Parent and Youth Characteristics

All Participants (N = 148)Elementary School (n = 38)Early Adolescence (n = 63)Late Adolescence (n = 47)P
Parent 
Mother responding 84 68 92 87 0.005 
White race 91 95 86 94 0.22 
Married/living together 83 84 86 79 0.61 
Have ≥3 children in household 27 30 32 20 0.35 
Parental education
High school or less
Some college/associate’s degree
College/graduate degree 

18
31
52 

11
26
63 

16
33
51 

26
30
44 
0.29 
Annual household income, $
≤50,000
50,000–99,999
≥100,000 

27
26
46 

21
13
66 

27
28
45 

33
36
31 
0.03 
DFRQ score 65 ± 19 82 ± 11 66 ± 13 50 ± 18 <0.0001 
Youth 
Female sex 50 50 44 57 0.40 
Diabetes duration, years* 0.7–15.7 4.5 ± 2.2 5.9 ± 3.4 7.9 ± 4.1 <0.0001 
Insulin regimen
Pump
Injections 

66
34 

76
24 

68
32 

55
45 

0.11 
Daily insulin dose, units/kg 0.9 ± 0.3 0.7 ± 0.2 0.9 ± 0.3 0.9 ± 0.3 <0.0001 
BGM frequency, times/day 5.6 ± 2.9 8.4 ± 2.3 5.4 ± 2.2 3.7 ± 2.2 <0.0001 
A1C, % 8.4 ± 1.3 7.7 ± 0.6 8.5 ± 1.2 8.9 ± 1.5 <0.0001 
All Participants (N = 148)Elementary School (n = 38)Early Adolescence (n = 63)Late Adolescence (n = 47)P
Parent 
Mother responding 84 68 92 87 0.005 
White race 91 95 86 94 0.22 
Married/living together 83 84 86 79 0.61 
Have ≥3 children in household 27 30 32 20 0.35 
Parental education
High school or less
Some college/associate’s degree
College/graduate degree 

18
31
52 

11
26
63 

16
33
51 

26
30
44 
0.29 
Annual household income, $
≤50,000
50,000–99,999
≥100,000 

27
26
46 

21
13
66 

27
28
45 

33
36
31 
0.03 
DFRQ score 65 ± 19 82 ± 11 66 ± 13 50 ± 18 <0.0001 
Youth 
Female sex 50 50 44 57 0.40 
Diabetes duration, years* 0.7–15.7 4.5 ± 2.2 5.9 ± 3.4 7.9 ± 4.1 <0.0001 
Insulin regimen
Pump
Injections 

66
34 

76
24 

68
32 

55
45 

0.11 
Daily insulin dose, units/kg 0.9 ± 0.3 0.7 ± 0.2 0.9 ± 0.3 0.9 ± 0.3 <0.0001 
BGM frequency, times/day 5.6 ± 2.9 8.4 ± 2.3 5.4 ± 2.2 3.7 ± 2.2 <0.0001 
A1C, % 8.4 ± 1.3 7.7 ± 0.6 8.5 ± 1.2 8.9 ± 1.5 <0.0001 

Data are % or mean ± SD, unless otherwise noted.

*

Diabetes duration presented as range for all participants and as mean ± SD for each age-group.

Acquisition of Responsibility for Self-Care in Childhood and Adolescence

Parent-reported responsibility for diabetes care tasks is shown in Figure 1. The age at which youth acquired more responsibility for diabetes self-care tasks, according to parent report, differed across the five domains. The proportions of youth reported to be mainly responsible for self-care was greater in the older age-groups for all five domains. In the elementary school group, the majority of parents reported primary responsibility for communication (e.g., telling others about diabetes), health surveillance (e.g., sick day care), monitoring, and insulin dosing; however, most parents (60%) reported that nutrition was a shared responsibility. Similar to the elementary school group, the majority of parents of early adolescents had primary responsibility for communication and health surveillance, and most parents (53%) reported that nutrition was a shared responsibility. Early adolescents had greater responsibility for monitoring and insulin dosing, with 49% of youth having primary responsibility for monitoring and 32% having primary responsibility for insulin dosing. In the late adolescent group, the majority of youth had primary responsibility for nutrition (55%), monitoring (60%), and insulin dosing (70%), and about half (47%) had primary responsibility for communication. Parents in the late adolescent group maintained a high level of involvement in health surveillance, with 60% reporting primary responsibility and 36% reporting shared responsibility.

Figure 1

Parent-reported responsibility endorsement of type 1 diabetes self-care domains by age-group.

Figure 1

Parent-reported responsibility endorsement of type 1 diabetes self-care domains by age-group.

Close modal

Associations Between Acquisition of Self-Care Responsibility and A1C

A1C was significantly associated with several participant characteristics. Correlational analyses showed positive associations of A1C with youth age (R = 0.38, P <0.0001), diabetes duration (R = 0.16, P = 0.047), and daily insulin dose (R = 0.39, P <0.0001). Females had higher A1C than males (8.7 ± 1.4% vs. 8.1 ± 1.1%, respectively, P = 0.006), as did youth on a multiple daily injection regimen compared with those treated with insulin pump therapy (8.9 ± 1.6 vs. 8.2 ± 1.0, P = 0.009). Finally, youth A1C was inversely related to frequency of daily BGM (R = −0.49, P <0.0001) and parent involvement in diabetes management tasks (R = −0.19, P = 0.02).

Next, we performed multivariate linear regression modeling to identify the relationship between parent involvement in each of the five diabetes self-care domains and youth A1C, controlling for youth age, sex, BGM frequency, and insulin regimen (pump vs. injections). Greater parental involvement for insulin dosing (higher DFRQ scores on the insulin dosing domain) was significantly associated with higher A1C levels (P <0.0001, model: R2 = 0.38, P <0.0001). Greater parental involvement on the nutrition domain was also associated with higher A1C levels (P = 0.003, model: R2 = 0.34, P <0.0001). Parental involvement in monitoring was not significantly associated with youth A1C, although more frequent BGM was significantly associated with lower A1C (P = 0.0006). For the other two self-care domains—communication and health surveillance—parental involvement was not associated with youth A1C in the multivariable models.

Youth and families appeared to share responsibilities in care across the spectrum of diabetes self-care tasks. These parent-reported perceptions of diabetes management indicated that even young children have some responsibility for less complex care tasks (e.g., deciding what to eat, monitoring blood glucose), whereas adolescents are mainly responsible for more complex tasks (e.g., insulin therapy and communication). Although national and international standards of care in type 1 diabetes reinforce the importance of individualized care to achieve better diabetes outcomes, few studies have reported benchmarks for expectations with regard to sharing diabetes task responsibilities between youth and their family members (1,13). From a pediatric development perspective, children should be involved in diabetes self-care skills when they demonstrate knowledge and skills compatible with their maturity (17). Nonetheless, the process of mastering diabetes self-care tasks is individual to each child, and both parents and health care professionals must recognize when children or adolescents are ready to assume additional responsibility for their self-care.

Overall, our study highlights that self-care tasks related to nutrition, insulin therapy, and monitoring were mainly youth responsibilities by late adolescence. These observations suggest that there is a need to ensure timely re-education and support for youth as they begin to accept more self-care responsibilities during childhood and adolescence. This strategy may be particularly important for adolescents who were diagnosed at a young age, when initial diabetes education was likely directed toward their parents. Such focused youth education and support, particularly around the topics of nutrition, insulin therapy, and monitoring, may facilitate greater acceptance of self-care responsibility and ultimately ensure more effective future transitions in care from pediatric to adult diabetes health care systems. In addition, it is important to identify ways to maintain healthy and collaborative supervision by parents as youth assume more responsibility for their diabetes management.

The acquisition of self-care responsibility by teens is generally supported by ongoing support from parents and begins with an interdependence across diabetes management tasks. There is a natural transition in care responsibilities as teens begin to navigate away from the family unit and spend more time in academic, athletic, social, and even work-related activities (5). Nonetheless, until there is complete transition in care from parents to older teens, a safety net of parental oversight may exist. Successful acquisition of diabetes self-care responsibility is likely to make for greater ease in transfer from pediatric to adult health care settings, an area that remains challenging and under study worldwide (18,19).

Overall, greater parental involvement in youth self-care was associated with lower youth A1C levels, as has been previously reported (16,20). With regard to the self-care domains, insulin dosing and nutrition were the only domains for which parental involvement was significantly associated with A1C, after controlling for age, sex, insulin regimen, and BGM frequency. However, these associations were not specifically aligned with previous reports of greater parental involvement yielding lower youth A1C (16). Instead, higher parental involvement with insulin management was associated with higher A1C, possibly as a reaction to the need for greater parental supervision to improve youth glycemic control. Similarly, shared nutrition management was associated with higher A1C, potentially because of parents’ recognition of the need for more supervision of youth dietary management when youth A1C was high. Given the cross-sectional nature of our observations, we cannot determine causality but offer these explanations based on our extensive collective experience.

Limitations

There are limitations to these observations despite the strength of the wide age-range of youth, including children from elementary school through the end of high school. First, given the cross-sectional nature of this study, we could not assess individual-level changes in acquisition of self-care tasks across childhood. This information could be collected in the future by performing a longitudinal assessment of parents’ reports of diabetes self-care responsibilities. Second, youth reports of diabetes self-care involvement would enhance our understanding of the timing of self-management. Next, the five self-care domains were selected based on clinical recognition of diabetes self-care tasks without confirmation by factor analysis, although internal consistency was satisfactory based on the Cronbach α. Future use of these domains in other studies should be preceded by additional psychometric evaluation.

Finally, study participants were represented by a nondiverse sample with a majority of White and middle- to upper-class families. Previous studies have shown that social, economic, and health care disparities affect glycemic control in youth with type 1 diabetes (21,22). We did not observe differences in parental involvement according to the available variables related to socioeconomic status. Larger and more diverse samples, including members of racial and ethnic minority groups and wider ranges of parental education level and economic status, may identify differences in parental involvement (e.g., related to cultural expectations). Our sample likely experienced similar access to diabetes health care, given receipt of childhood diabetes care at a single institution. Future studies would also benefit from involvement of multiple centers with geographic diversity.

Furthermore, technologies have advanced rapidly since our data were collected. As penetration of technologies in diabetes care continue to increase, it will be important that questionnaires on self-care behaviors include the use of devices such as continuous glucose monitoring and automated insulin delivery systems. Such technologies will still require advanced understanding for their proper use by youth as they acquire greater self-care responsibility and parental involvement declines. Future research can investigate whether youth responsibility in self-care for the five domains used in this analysis has changed in the modern era with these technologies, especially given the facility with which youth embrace such advancements (23). Newer diabetes technologies may have implications for how parents and youth share responsibilities for diabetes management. We acknowledge these as limitations, which provide avenues for future research. Nonetheless, our findings remain applicable to many youth with type 1 diabetes globally who reside in developing countries where such technologies are less available (11).

Implications for Practice

Understanding the acquisition of self-care responsibility in youth with type 1 diabetes can help structured diabetes education and support programs set a foundation for successful future self-care as young children grow older. The findings of this study present the expectations for type 1 diabetes self-care acquisition across childhood and its possible impact on A1C. Diabetes education and support programs can benefit from these data by providing a framework to establish realistic and developmentally appropriate goals for youth acquisition of self-care skills. For example, diabetes care and education specialists might deliver focused education strategies on nutrition and insulin dosing for school-aged children with type 1 diabetes.

These data demonstrate a gradual transition in responsibility for diabetes care from parents to youth during childhood and adolescence, during which greater overall parental involvement in diabetes management tasks is associated with lower A1C. It is important that pediatric diabetes care teams remind parents that family management of diabetes is key; young children are not equipped or expected to perform diabetes self-care tasks on their own, and even growing and developing adolescents can still benefit from the safety net of parental support in a developmentally appropriate manner.

Funding

This work was supported by the CAPES Foundation within the Ministry of Education, Brazil (finance code 001); a Mary K. Iacocca Fellowship provided by the Iacocca Foundation; a grant from the American Diabetes Association; and National Institutes of Health grants P30DK036836 and K12DK094721. The content is solely the responsibility of the authors and does not necessarily represent the official views of these organizations.

Duality of Interest

No potential conflicts of interest relevant to this article were reported.

Author Contributions

R.O.L.B. designed the study, performed the analyses, and wrote the manuscript. L.K.V. collected the data, reviewed the data analysis, and edited the manuscript. L.M.L. designed the study, collected the data, reviewed the data analysis, contributed with the discussion, and edited the manuscript. L.M.L. is the guarantor of this work and, as such, had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Prior Presentation

Portions of this article were presented as an abstract at the American Diabetes Association’s 79th Scientific Sessions, 7–11 June 2019, San Francisco, CA.

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