Parent Perspectives on Educational and Psychosocial Intervention for Recent-Onset Type 1 Diabetes in Their School-Age Child: A Qualitative Study

This study was conducted within the context of the TACKLE T1D (Treatment Adherence and Control in Kids: A Longitudinal Evaluation) study (R01 DK100779), a multisite, prospective, longitudinal study examining factors that affect treatment engagement and children’s glycemia during the first 3 years post-T1D diagnosis. Parents/caregivers were recruited from a Midwestern children’s hospital–associated network of pediatric diabetes clinics. Eligibility criteria included parents/caregivers who were English-speaking and who were a legal guardian of a child who was diagnosed with T1D between the ages of 5 and 9 years and using intensive insulin therapy, with the child’s T1D diagnosis occurring within the past 24 months. Families were ineligible if their child did not have T1D, had a severe psychiatric disorder or comorbid chronic condition (e.g., renal disease), or was taking a medication that could affect glycemic control (e.g., systemic steroids). We attained local institutional review board approval before recruitment. Parents/caregivers provided written informed consent and attended a one-time study visit where they completed all study activities. Parents/caregivers received $20 for completing this visit.

Parents/caregivers completed the Hypoglycemia Fear Survey–Parent (HFS-P [25]), a 26-item measure of parent hypoglycemia fear; the Center for Epidemiological Studies Depression Scale Revised (CESDR [26]), a 20-item measure of parent depressive symptoms; the Problem Areas in Diabetes–Parent Revised (PAID-PR [27]), an 18-item measure of parent-perceived diabetes distress; and the Test for Diabetes Knowledge (TDK-5 [28]), a 29-item measure of diabetes self-management knowledge. We report total scores for each measure, where higher scores indicate greater symptomology or knowledge. Of note, scores ≥16 on the CESDR indicate clinically elevated depressive symptoms (26); however, the other measures do not have consistent clinical cut points.

We asked parents/caregivers to sort 55 preprinted cards into six possible categories: 1 month, 3 months, 6 months, 9 months, or 12 months post-diagnosis and never/not relevant, reflecting when parents/caregivers might prefer to receive education about the card topic during the first year after their child’s T1D diagnosis. The card topics related to T1D self-management, including self-care, parenting skills, parent/caregiver psychological well-being, adjustment to chronic illness, quality of life, family factors (e.g., communication and family conflict), T1D knowledge, coping skills, and social support. We also provided parents with up to five blank cards to add any relevant topics they perceived were missing from the existing cards. Parents/caregivers sorted cards manually using baskets labeled with each time point. In turn, a research assistant manually recorded parents’ responses in real time and later transferred the data to an Excel spreadsheet to calculate the percentage of times each card was sorted into each category.

We asked each parent/caregiver nine open-ended questions using a structured interview guide to obtain additional information about their experiences during the recent-onset period. (See Supplementary Material.) Parents further indicated whether information provided by the health care team during the first year post-diagnosis was helpful, unhelpful, or confusing and responded to a question about any ongoing concerns they had for their child with T1D. We audio-recorded and transcribed each interview. Two researchers independently coded transcripts for de novo themes repeated by at least three parents/caregivers. In case of discrepancy, the researchers finalized themes through consensus.

Thirteen parents/caregivers completed the card-sorting task, 11 completed the qualitative interview (n = 2 missing because of technology/recording error), and 9 completed the study surveys (n = 4 lost to follow-up). The majority of parents/caregivers were mothers and between 30 and 41 years of age. Children were between 6 and 9 years of age and 5–22 months (mean 9.67 ± 6.48 months) post-T1D diagnosis at the time of the study visit.

On the CESDR, parents/caregivers endorsed low levels of depressive symptoms (mean score 5.2 ± 4.0, possible range 0–60), and no one scored above the clinical cutoff (CESDR ≥16) for depressive symptoms. On the PAID-PR, parents/caregivers also reported low levels of diabetes distress (mean score 20.7 ± 14.0, possible range 0–72). In contrast, parents/caregivers reported moderate levels of hypoglycemia fear (mean score 63.9 ± 8.8, possible range 25–125). Notably, parents/caregivers identified engaging in two potentially adaptive behaviors sometimes to very often: 1) “Always carry fast-acting sugar” and 2) “Check my child’s blood sugar often when he/she is at school or activities.” Parents also identified two common worries occurring sometimes to very often: 1) “Worry my child will have a low blood sugar while sleeping” and 2) “Worry my child will have a low blood sugar when away from me and in someone else’s care.” Parents reported high knowledge of diabetes self-management (TDK-5 mean score 27.9 ± 2.3, possible range 0–29) (Table 1).

Parents tended to divide topics into four main stages of education across the 12 months post-T1D diagnosis (Table 2). Parents requested the topics “basic education” and “T1D survival skills” during the first month post-T1D diagnosis (Stage 1). Between 1 and 3 months post-diagnosis (Stage 2), they indicated that education should shift from basic T1D knowledge to the application of this knowledge in daily life. Between 3 and 6 months post-diagnosis (Stage 3), parents commonly endorsed a desire for information regarding community supports and how to manage T1D-related fears. At 6 months post-diagnosis and beyond (Stage 4), parents expressed an interest in learning how to safely promote their child’s T1D autonomy and strategies for managing burnout. In addition, parents identified some topics that they would have liked to have received multiple times during the first year post-diagnosis. These topics included promoting adjustment to T1D, T1D survival skill refreshers, recent T1D technologies, and handling major life transitions (e.g., starting school). All card sort items and parent-requested time points are provided in the Supplementary Materials.

Researchers identified 23 de novo codes repeated by at least three different parents. Then, using thematic analysis, these codes were fit into four overarching themes: anxiety, autonomy, distress, and support.

Parents reported that sending their child back to school after being diagnosed with T1D was scary and also described school transitions or changes in school providers as stressful.

Parents described sick-day care as confusing, overwhelming, and frustrating and endorsed worrying about their child becoming sick.

However, even on typical days, parents reported extreme fears about high and low blood glucose, and many endorsed concerns about acute and long-term health complications of high or low blood glucose levels.

Parents described ongoing difficulty trusting other adults to care for their child with T1D, the steps they have taken to train certain adults in T1D, or how they have chosen to limit their child’s activities because of their mistrust.

Finally, parents expressed anxiety about managing costs associated with T1D, including current difficulties with insurance coverage of and gaining access to T1D technologies and uncertainty about being able to afford insulin and T1D supplies in the future.

Another overarching theme from parent interviews was child autonomy for T1D self-management. During the initial diagnosis period, many parents reported changing their parenting styles and restricting their child’s independence. However, as time passed, parents also expressed frustration when their child struggled to take on more responsibility for T1D tasks, they were unsure of how to effectively foster their child’s independence, and they worried that their child could develop long-term complications if he or she did not achieve adequate self-care independence.

Closely related to these feelings, parents described the emotional toll T1D may exact on children now and in the future, and they reported a need to help their children normalize their experience of T1D and learn how to handle difficult peer interactions.

Parent-reported distress was common. Indeed, parents described that their entire world was dominated by diabetes and that T1D self-care tasks and misperceptions about how difficult and uncertain T1D self-care would be made the early diagnosis period very stressful.

Moreover, across the first year post-diagnosis, many parents described feeling guilt, grief, hopelessness, helplessness, frustration, isolation, loneliness, stress, and burnout, and they described putting all of their attention on diabetes because of the relentlessness of daily T1D management.

Parents reported that miscommunication or a lack of communication with their child’s school or health care team was a source of distress, and in particular, they noted distress and confusion resulting from the use of too much jargon.

Parents endorsed the importance of support to cope with feelings of distress and T1D-related challenges. Unfortunately, parents were often unsure of where to find adequate support initially.

They stressed the importance of 24/7 support from their child’s health care team, as well as support they received from school nurses, teachers, coaches, counselors, psychologists, and extended family. They also stressed the importance of interacting with other families living with T1D through support groups, peer advocacy, and online forums.

Parents highlighted the importance of supports that normalized their child’s experience living with T1D and connected him or her to peers who also have T1D. Plus, they requested more resources to support the whole family, including siblings.

Finally, parents consistently stated that they would like more support to learn about T1D technologies, including when and how to select the best devices for their child, and frequent updates on any new technologies.

Based on a novel card-sorting task and qualitative interviews, parents of school-age children provided an ideal timeline for addressing specific diabetes education topics in the first year post-T1D diagnosis and described four primary areas of ongoing concern.

Not surprisingly, parents reported the importance of learning basic T1D education and survival skills in the first month post-T1D diagnosis (Stage 1: Basic Education and T1D Survival Skills). This finding is supported by previous qualitative studies, in which parents reported that their main concerns shortly after diagnosis were adapting to life with T1D and learning daily T1D management skills (29,30). In addition, this finding is consistent with current practice guidelines for diabetes self-management, which call for extensive education at the time of diagnosis, followed by regular refresher sessions to build on knowledge in a developmentally appropriate format (5).

In typical practice, families learn basic T1D management skills during the first few days or weeks after diagnosis during an inpatient hospital stay or through outpatient workshops. Current evidence suggests that both methods of education may be similarly effective, although outpatient education programs may offer reduced costs for youth who do not require acute hospitalization (31,32).

Between 1 and 3 months post-diagnosis, parents’ card- sorting responses suggest a shift toward wanting education to help them better apply T1D management skills in their everyday life (Stage 2: Application and Practice). Similarly, in previous qualitative studies, parents commonly described large-scale disruption of their daily living activities soon after their child’s diagnosis as a result of their focus on learning T1D self-management skills (29,30). Although by no means did parents in our study report a full return to “normal” between 1 and 3 months post-diagnosis, parents generally indicated the desire for information and resources to help them build their confidence in their T1D self-management skills and reestablish previous daily routines and life balance.

Interestingly, while existing qualitative studies report that parents often immediately perceive their child’s diagnosis as traumatic (30,33), parents in our study reported an interest in receiving information and resources on managing the emotional toll of T1D between 3 and 6 months post-diagnosis (Stage 3: Emotional Support) and an interest in learning strategies to manage burnout and develop their child’s T1D self-care autonomy between 6 and 12 months post-diagnosis (Stage 4: Building Autonomy and Managing Burnout). In this way, parents’ timeline for educational topics deemed relevant for later in the recent-onset period seems to match the limited available longitudinal data on parent functioning in the recent-onset period from research indicating that parents’ level of diabetes distress and hypoglycemia fear may peak at 6 months post-diagnosis (34).

Parent/caregiver survey data suggest that we recruited a sample that was not experiencing many depressive symptoms or feeling highly distressed by their child’s T1D. We believe that this finding may promote the generalizability of our results because it suggests that the parents/caregivers who participated in our project were likely not seeking treatment and therefore could give a neutral estimation of the appropriate timing for specific T1D educational topics or resources.

However, the parents/caregivers who participated did report moderate levels of hypoglycemia fear, and these were generally consistent with the levels reported by a different sample of parents of young school-age children with recent-onset T1D (35). Moreover, parents’ reports of fear appear to line up with several of their qualitative responses and with our four major qualitative themes of anxiety, autonomy, support, and distress.

Taken together, we believe these results may highlight the need for a dynamic and ongoing approach to T1D education in the recent period and beyond. At the most basic level, a dynamic approach to education may include 1) frequent refreshers on T1D survival skills, 2) regular screening for youth and parents’ emotional concerns and adjustment problems at quarterly clinic visits, and 3) timely distribution of resources to help families seek treatment for any emotional concerns or adjustment problems from institutional or community partners or to learn about new T1D therapies and technologies. Indeed, this basic level of dynamic education would be consistent with current practice guidelines (5) and may be easily scalable with the availability of several low-cost and validated measures of parent and youth fear of hypoglycemia, family conflict, and psychological symptoms.

However, on a larger scale, a dynamic educational approach could involve all of these components plus in-clinic deployment of new or previously developed adjunctive interventions to help reduce parenting stress (36), family conflict (37–39), and hypoglycemia fear (40) and promote quality of life (21). It is also possible that a larger dynamic education program could incorporate interventions targeting T1D treatment engagement. In fact, there is already evidence to support the feasibility of deploying family-based interventions to improve T1D treatment engagement within clinics (41) and to provide these interventions via telehealth (42). There is also evidence supporting the feasibility and acceptability of care ambassador and peer mentoring programs, which may provide a cost-effective and targeted approach to supporting and educating families during the new-diagnosis period (43–46). For example, in one study recruiting families in the first 6 months after a T1D diagnosis and testing a peer mentoring intervention, parents reported increased community support and confidence for T1D self-management and fewer negative perceptions about the impact of diabetes (45,46). Finally, a larger dynamic educational approach may offer families ongoing support during life transitions (e.g., starting school and starting adolescence) and support for siblings of youth in the recent-onset period of T1D.

We believe the use of a novel card-sorting task to collect detailed information from parents about the timing of education topics during the first year post-T1D diagnosis and our inclusion of parents’ qualitative responses represent areas of strength for this study. Our card-sorting task proved to be easy to implement and efficient and may be a useful strategy for collecting similar data in the future. Moreover, our qualitative data add significantly to the literature. Few studies have focused on learning about parents’ perspectives across the entire first year post-diagnosis, and thus, what we need are qualitative foundational data to direct the focus of clinical research in the future.

This study should also be interpreted in light of its limitations. We report only qualitative data from a small sample of parents within a single Midwestern hospital system. Thus, it is possible that findings may not generalize to other geographic regions or parents and need to be replicated and confirmed. We asked parents only about topics during the first year post-T1D diagnosis, so findings may have limited impact on T1D education beyond the recent-onset period. Moreover, because we only collected data from one parent, we cannot describe how other family members may experience the recent-onset period, suggesting that we may need a follow-up study that includes more family respondents (e.g., all caregivers and siblings of the child with T1D) to obtain a more holistic family perspective. Finally, our data on parent/caregiver preferences for when to receive T1D education topics reflects their individual experiences, which may not translate to when providing this information could have the biggest impact on T1D-related outcomes. Therefore, a future study will need to explore the impact of using this proposed timeline for T1D education on families’ psychosocial and health-related outcomes.

To conclude, our findings support a four-stage framework for delivering T1D education, support, and resources to families of school-age youth within the first year post-T1D diagnosis. In addition, our data suggest that clinics should use a dynamic T1D educational approach that, at the most basic level, involves regular T1D refresher sessions, parent and youth psychosocial screening, and timely distribution of treatment resources and information about new T1D technologies. At a larger scale, it may also be feasible and acceptable to support clinic-deployed psychosocial and behavioral interventions to help families who evidence problems with treatment engagement and/or screen positive for psychosocial concerns.

As future areas of research, it may be helpful to pose similar questions about T1D educational needs to families further out from their T1D diagnosis, to continue to develop and test low-cost and flexible approaches to providing T1D education and treatment (e.g., mHealth/eHealth and peer mentoring programs), and to conduct implementation trials to identify effective educational programs and interventions for the recent-onset period that are also scalable for widespread clinic use.

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

A.M.M. and A.D.M. analyzed the data based on qualitative themes and wrote the manuscript. K.G. and M.A.C. reviewed/edited the manuscript. S.R.P. participated in the project design, contributed to the results and discussion, and reviewed/edited the manuscript. S.R.P. is the guarantor of this work and, as such, had full access to the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analyses.