Parental perception and knowledge of type 1 diabetes mellitus (T1DM) management in children and adolescents: a qualitative study

Introduction

Background

Type 1 diabetes mellitus (T1DM) is an autoimmune disease in which the body’s immune system attacks the insulin-producing beta cells in the pancreatic islets. Diabetes affects more than 180 million people worldwide (1,2), and T1DM is among the most common chronic diseases in children and adolescents (3). The global incidence of T1DM has been increasing, including in Saudi Arabia (4,5), where the prevalence among children is approximately 109.5 per 100,000 (1).

Management of T1DM is complex, requiring multiple daily insulin injections or continuous subcutaneous insulin infusion via insulin pump therapy, frequent blood glucose monitoring, dietary changes, and maintenance of an active lifestyle (6,7). Because of the demanding nature of T1DM management, particularly in children and adolescents, parental involvement and support are crucial to achieving optimal glycemic control and health outcomes (8,9). The effectiveness of treatment depends on multiple factors, including the patient’s knowledge and compliance, physical activity, nutritional adequacy, acceptance of available treatment methods, and other environmental influences (10).

Parents bear substantial responsibility for providing complex care for a child with T1DM during a period of life that is already challenging (11,12). They must monitor blood glucose, administer insulin, regulate diet and activity, and make constant adjustments to maintain normal metabolic balance while supporting the child’s growth and participation in everyday life (13). This responsibility imposes an enormous burden that can negatively affect parental psychological well-being and satisfaction in managing their child’s condition (14,15). Several studies have shown that parents of children with T1DM report higher levels of stress, anxiety, and depression compared with parents of healthy children (14,16). Moreover, difficulties in coping with the demands of T1DM management and balancing parental responsibilities can contribute to suboptimal adherence to treatment recommendations. Previous studies indicate that educating children with diabetes about the disease is essential (11,12). However, parents who are intent on ensuring a normal childhood for their children may hesitate to allow them to assume any responsibility for managing diabetes (17). These concerns can lead parents to avoid discussing the disease with their children, which may leave them less informed, less able to contribute to self-management, and more concerned about a condition they do not fully understand (18).

Rationale and knowledge gap

Family serves as a vital resource in supporting children with self-management (19,20). Substantial research has reported the importance of family support in managing diabetes among children with T1DM (21,22). However, few studies have examined the influence of the family on the lives of children and adolescents with T1DM in Saudi Arabia. A review article discussed several challenges, including limited patient and parent awareness of T1DM and its complications, inadequate psychosocial support, insufficient resources for school-based assistance, and ineffective self-management techniques, in treating children and adolescents with diabetes in Saudi Arabia (23). Understanding parental perspectives can help healthcare professionals develop strategies and interventions to support parents and promote optimal T1DM care for their children (18).

Objective

In this study, we aimed to explore parental knowledge and perception of diabetes management in children and adolescents with T1DM. We present this article in accordance with the SRQR reporting checklist (available at https://pm.amegroups.com/article/view/10.21037/pm-25-8/rc).

Methods

Study design

A qualitative thematic analysis study using one-to-one interviews was conducted in Saudi Arabia from March to October 2022.

Study setting

Semi-structured interviews, each lasting 20 to 45 minutes, were conducted by telephone. Participants were recruited nationally through social media platforms, such as Twitter.

A survey was created with a brief explanation of the study, including its aim, design, and inclusion criteria. Parents willing to participate were asked to indicate their child’s age and provide a contact number. Based on the survey responses, the research team contacted parents to schedule telephone interviews at a time convenient for them. The presence of adolescents or children during the interviews was optional rather than mandatory. All questions were open-ended, and when both parent and child were present, sufficient time was allowed for each to respond. Questions included sex, age, date of diagnosis, nationality, and type of insulin used. Interviews were conducted by trained personnel.

The research team included healthcare professionals who had received training from the study’s principal investigator on conducting a qualitative interview study. Training focused on the research questions for this study to minimize bias and standardize the process. Mock interviews were conducted as part of the training.

Study population and sample

Parents of patients with T1DM aged ≤18 years who agreed to participate were included. Participants who did not receive care in Saudi Arabia or did not speak Arabic were excluded. Parents who declined participation were also excluded.

Study tool

A semi-structured interview guide assessed parents’ knowledge and perceptions of T1DM management in children, covering areas such as insulin treatment, blood glucose monitoring, diet, physical activity, self-care, communication with healthcare teams, barriers, and school management. Parents reported their child’s most recent hemoglobin A1c (HbA1c) value based on clinical documentation from their routine diabetes visits. No medical records were accessed. Demographic information was collected. Experts, including pediatric endocrinologists, nurse educators, and health education specialists, reviewed the guide to ensure validity. A pilot study with five parents evaluated question clarity, resulting in minor modifications to sequence and wording before data collection. The pilot study data were not included in the final analysis.

Data collection procedure

The researcher conducted phone interviews at times convenient for participants, explaining the study’s nature and purpose beforehand. Participation was voluntary and could be withdrawn at any time. Interviews began with demographic questions and proceeded to discussions of T1DM management experiences, lasting 20–45 minutes. Patients participated in the interviews alongside their parents. In all cases, parents were the primary participants; however, in 7 of the 19 interviews, the child/adolescent was present and contributed spontaneously to the discussion. The remaining 12 interviews were conducted with parents alone. When dyadic interviews occurred, parents and children were given the opportunity to speak individually. Parent and child comments were analyzed together as part of the family narrative. Interviews were recorded, transcribed, and coded with participant IDs to maintain anonymity. Transcription accuracy was verified, and member checking was performed to confirm the credibility of findings. Data collection continued until saturation, when no new patterns or themes emerged, and patients from all specified age groups were represented.

Data analysis

The content analysis method, recommended for qualitative research, was used to analyze the data (24-26). Two researchers separately examined the data using an inductive methodology, with differences resolved by a third researcher. For dyadic interviews, parent and child contributions were coded as part of the same transcript but labeled by speaker to maintain analytic clarity.

First, the audio recordings were transcribed. Second, the researchers coded the data after a line-by-line analysis of each transcription. Third, they jointly determined the appropriate subthemes for the coded data. These subthemes were then combined to produce the main themes. Using the NVivo^® program, the researcher conducted a thematic examination of the data. The main themes and their underlying subthemes were identified and compared with the participants’ comments and responses to the study questions. The interview sequence, along with participants’ ages and sexes, was included to provide context for the findings.

Ethical considerations

To maintain confidentiality, all data, audio recordings, transcripts, and notes were stored in locked cabinets and in password-protected files accessible only to the research team. This study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by institutional ethics board of Taibah University (IRB# 00010413) and individual consent for this retrospective study was waived.

Results

Nineteen children and adolescents with T1DM, aged 4 to 18 years, participated in the study through interviews conducted with their parents. Among the 19 participants, 10 (52.6%) were female, and 9 (47.4%) were male. Regarding age distribution, 1 participant was under 5 years old, 8 (42.1%) were between 5 and 9 years, 7 (36,8%) were between 10 and 14 years, and 3 (15.8%) were between 15 and 18 years of age. The duration of diabetes was 1 year in 8 (42.1%) participants, 2–3 years in 7 (36.8%) participants, and more than 4 years in 4 (21.1%) participants (Table 1). Most participants used multiple daily injections, while only three used insulin pumps. Analysis of the interviews revealed four major themes.

Theme 1: role of parents in T1DM management

Children and adolescents frequently relied on their parents to follow physicians’ prescribed instructions and recommendations regarding medication, diet, insulin dosage, and other aspects of disease management. Some parents assumed complete responsibility for administering insulin and advising their children on appropriate food choices to regulate blood glucose levels. In many cases, parents calculated carbohydrate intake, determined appropriate insulin doses, and administered injections themselves.

One mother described the experience:

“...The family adapted to the situation. Initially, I had to learn to calculate doses and give injections while in the hospital. After that, I joined the telegram group that shares information on how to manage similar conditions. The doctor also guided us.” (mother of a 5-year-old female).

Adolescents often identified their mothers as their primary source of support, particularly during puberty and physical changes. Some parents had to leave their jobs to care for their children. As one participant and her mother recounted:

“...my mother started learning about my condition and tried to motivate me to exercise and stay healthy. She had to resign from her job because of the difficulty of managing diabetes while working. My sister also developed diabetes, but my mother had enough experience dealing with type 1 diabetes from her previous experience with me.” (16-year-old female; mother was also interviewed).

Parents play an essential role in managing T1DM in children and adolescents by administering medication, regulating diet, calculating insulin doses, and providing emotional support. Mothers often sacrificed their careers to manage their children’s condition, as having both parents work full-time while caring for a child with T1DM proved challenging.

Theme 2: parental knowledge of T1DM

Most parents demonstrated a lack of functional knowledge about carbohydrate counting and insulin-to-carbohydrate ratio assessment, although they possessed some essential skills for managing T1DM, such as frequent blood sugar testing and insulin administration. Parents attempted to learn carbohydrate counting from different informal sources, as described by participants:

“I searched for methods to calculate carbohydrates and asked different people their opinions about the carbohydrate counting method. Based on our calculations, the pump releases insulin doses into the bloodstream after we calculate the carbohydrate intake.” (mother of a 9-year-old female).

Another participant explained, “...her father and I are responsible for managing her diabetes. We try to calculate and adjust insulin and carbohydrate needs based on the child’s weight, and according to the results, we give insulin doses.” (mother of a 7-year-old female).

Although some parents understood carbohydrate calculation, most struggled with the process due to a lack of guidance from nutritionists or physicians. One participant noted:

“... we use fixed doses. I do not know how to calculate carbohydrates. I tried to learn on my own, but I could not. The nutrition specialist did not teach us during hospital admission or follow-up visits.” (mother of a 5-year-old female).

Participants described how their parents managed their T1DM using quick-acting and long-acting insulin to control blood sugar, demonstrating awareness that high blood sugar can negatively impact health. One participant said: “... we use two types of insulin: fast-acting and long-acting. My sister is responsible for calculating and scheduling the insulin, but my mother believes that for each serving of carbohydrates, roughly a unit of insulin should be given.” (a 12-year-old female, mother was also interviewed).

Another participant described how the father monitors and controls blood sugar before administering insulin: “...we use both fast-acting and long-acting insulin injections. I’m responsible for child management. For instance, if the blood glucose level was 300 mg/dL, we roughly estimate the number of units needed to be given.” (father of a 4-year-old male).

Some parents showed good knowledge and skills in managing T1DM, yet most struggled with certain aspects, particularly carbohydrate calculation. This finding highlights the importance of proper education and guidance from healthcare professionals. One parent demonstrated partial understanding of diabetes management but lacked essential knowledge considered high-risk, such as reliance on fixed insulin doses and limited understanding of carbohydrate counting and correction factors. In addition, some parents relied on rough estimations for insulin doses, practices that pose critical safety risks.

Theme 3: parent perception of T1DM

Although parents recognized that providing a healthy diet is essential in diabetes management and that certain foods should be avoided to control blood sugar, many were reluctant to enforce strict dietary restrictions. Many children admitted craving foods high in sugar, and parents agreed that restricting such foods is unhealthy for growing children, despite the condition.

As one participant said, “...not following any diet because my child is in a growth stage.” (mother of a 9-year-old male).

Another participant noted, “...not following any diet, but we are trying to limit and avoid fatty food, sweets, and chocolate while trying to provide a healthy diet.” (mother of a 13-year-old female).

Some families struggled with dietary management, reporting that some foods lacked nutritional value or that frequent eating out made carbohydrate calculation difficult. One participant explained, “...regulating sugar is difficult; sometimes the sugar level increases to 200 mg/dL, although we are committed to giving her the required insulin doses. We are having difficulty managing the type of food for our child because she is not accepting her condition.” (mother of a 12-year-old female) Another parent expressed similar frustrations (mother of an 11-year-old male).

While parents understood the importance of a healthy diet in managing T1DM, many thought dietary restrictions were necessary for achieving good control, yet reported that this was very hard to maintain. Most families faced difficulties regulating their child’s diet due to challenges in calculating carbohydrates when eating out or coping with children’s cravings for high-carbohydrate meals and snacks. Although committed to administering insulin appropriately, some found maintaining blood sugar within target ranges highly challenging.

Theme 4: barriers to T1DM management in children and adolescents

Despite high HbA1c levels in some children indicating poor glycemic control, most participants reported receiving minimal medical guidance on managing diabetes. One participant explained, “...health centers lack a pediatric endocrinologist, and the child is examined by a family doctor or general pediatrician.” (mother of an 11-year-old male).

Another participant said, “...The communication and guidance from the hospital on how to care for our diabetic child were inadequate. The hospital was supposed to guide us in managing our child’s condition, especially early after diagnosis, because we had no idea how to take care of her.” (mother of a 12-year-old female).

Many participants identified family members and online groups as their primary sources of information on managing T1DM. For example, one mother stated, “...at first, it was very difficult to deal with T1DM. I had to join a parent-based education group on Telegram to learn how to manage her condition.” (mother of a 9-year-old male).

Another participant shared, “...the beginning was very difficult. While we were trying to adapt to the child’s situation, we had to learn how to give injections and calculate doses at the time of diagnosis. The doctor gave us some instructions, but we mainly learned through joining the parent-based education group on Telegram.” (mother of a 5-year-old female).

Some children were denied care at certain hospitals due to their age. For example, one mother described, “Suffering after a referral from a pediatric clinic to an adult clinic, and there was no specialized clinic for adults in the same hospital. He remained without equipment for insulin pumps for a while.” (mother of a 16-year-old male).

Accessing necessary supplies such as sensors and needles was also challenging for some families. One participant explained, “Providing the necessary supplies for diabetics such as sensors and needles, as I suffered from an outage of the sensor and needles for a while.” (mother of a 12-year-old female).

A lack of guidance from physicians, age restrictions on treatment at some hospitals, difficulty accessing necessary medical supplies, and reliance on informal sources of information were significant barriers to T1DM management. All of these factors are critical to effective T1DM care and may contribute to poor glycemic outcomes, which can manifest as elevated HbA1c levels.

Discussion

T1DM is a chronic condition that requires daily management to maintain healthy blood sugar levels. Parents play a crucial role in managing T1DM in children and adolescents by administering medication, regulating diet, calculating insulin doses, and providing emotional-support (26). This qualitative study explored parental perceptions and knowledge of T1DM management among children and adolescents. Nineteen children and adolescents with T1DM, aged 4 to 18 years, participated in the study. Most participants were using multiple daily injections, and only three used insulin pumps. A thematic analysis of the interviews with parents revealed four major themes: the role of parents in T1DM, parental knowledge of T1DM, parent perception of T1DM, and barriers to T1DM management in children and adolescents.

The themes indicate that while parents play an essential role in T1DM management and often possess some knowledge of the condition, challenges remain in implementing healthy diets, calculating carbohydrates, and controlling blood sugar.

• Theme 1: this study found that children and adolescents relied heavily on their parents to follow physicians’ prescribed instructions regarding medication, diet, and insulin dosage. Some parents assumed full responsibility for administering insulin and guiding their children toward appropriate food choices to regulate blood sugar levels. Mothers, in particular, often sacrificed their careers to manage their children’s condition, a finding consistent with previous research (27,28). An emotionally supportive and accepting parenting style (parental responsiveness) has enduring implications for improving the quality of life of children and adolescents with T1DM (28).
• Theme 2: administering insulin, conducting close monitoring, and performing regular testing were widely practiced as recommended (29,30). However, many parents struggled with essential skills, such as carbohydrate counting, determining the insulin-to-carbohydrate ratio, and calculating corrective doses. These gaps demonstrate the importance of proper education and guidance from healthcare professionals. Additionally, parental responsiveness has been associated with lasting improvements in quality of life for children and adolescents with T1DM (28).
• Theme 3: parents recognized the importance of diet in managing T1DM but often reluctant to impose strict food restrictions on growing children. Some families struggled to regulate diet due to difficulties in calculating carbohydrates when eating out and addressing children’s cravings for restricted foods. Although parents remained committed to proper insulin administration, some felt that regulating blood sugar through diet alone was challenging. Previous studies also found that dietary adherence is difficult for families and that both insulin therapy and diet are required for optimal control (31,32). A literature review indicated that parents of children with T1DM may experience increased stress and anxiety related to their child’s condition, which can affect their ability to manage it effectively (11). Another study found that adolescents with T1DM show less effective metabolic control than other age groups, partly because of biological changes, making parental monitoring particularly important during the adolescent transition years (33).
• Theme 4: the study identified several significant barriers to T1DM management, including insufficient guidance from physicians, age restrictions on treatment at some hospitals, difficulty in obtaining necessary medical supplies, and reliance on informal sources of information. Improved access to pediatric endocrinologists, age-appropriate care, medical supplies, and structured education programs may help address these barriers. Such challenges have also been reported in previous research (34-36).

A previous study found that parents’ perceptions of their children’s knowledge of diabetes and their role in diabetes management can impact clinical outcomes (11). Additionally, conflicts within families regarding diabetes management and difficulties in recognizing problems in illness self-management can negatively affect the quality of life of adolescents with T1DM and their parents (37).

Overall, the findings highlight the significant role of parents in managing T1DM in children and adolescents. Although some parents demonstrated a solid understanding of T1DM management, challenges remain in implementing healthy diets, calculating carbohydrate intake, and regulating blood sugar levels. Proper education and support from healthcare professionals can help families manage T1DM more effectively. The study also highlights the need for improved access to pediatric endocrinologists, age-appropriate care, medical supplies, and structured education programs to address the barriers to effective T1DM management.

This study has several limitations. First, the small sample size of 19 participants limits the generalizability of the findings. A larger sample would provide a more comprehensive understanding of parental perceptions and barriers to managing T1DM. Second, the study lacked information on participants’ socioeconomic status, education level, and income. These factors significantly influence health literacy, access to medical care, and the ability to manage chronic diseases. Their inclusion would provide valuable context for interpreting the results. Third, the study relied solely on self-reported data from participant interviews, which can be subject to biases such as social desirability and recall bias. Triangulating the findings with objective data from medical records or physician reports would strengthen the validity and reliability of the results. Additionally, interviews varied in format (parent-only vs. parent-child dyads), which may have influenced parental responses due to social desirability or the desire to avoid worrying the child.

Conclusions

The study emphasizes the critical role of families in managing T1DM in Saudi children/adolescents and the burden of caring for this complex disease. Parents often understand T1DM and its management techniques; however, implementing a healthy diet, calculating insulin doses, and regulating blood sugar remain challenging. Many rely on informal educational resources and encounter difficulties in accessing medical supplies and optimal pediatric endocrinology care. Although participants did not explicitly link high HbA1c levels to system challenges, many described difficulties accessing supplies, education, and specialized care. These barriers may contribute to suboptimal glycemic control and highlight the need for improved structured support for families managing T1DM. All of these challenges raise safety concerns and highlight the need for a collaborative approach involving pediatric endocrinologists, primary care doctors, nurses, dietitians, psychologists, and community organizations to address medical and psychosocial needs. Families and healthcare providers can optimize T1DM management through integrated care and education, thereby reducing health risks and promoting a healthy transition to adult care. Continued advocacy and policy changes are needed to improve access to care, supplies, and technologies for all families. Although managing T1DM is a lifelong challenge, adequate resources and support enable children and their families to achieve better control and live fulfilling lives. This qualitative study provides insights into parental perceptions of T1DM management, though its findings are limited by the small sample size, lack of objective data, and its exclusive focus on parental experiences.

Acknowledgments

None.

Footnote

Reporting Checklist: The authors have completed the SRQR reporting checklist. Available at https://pm.amegroups.com/article/view/10.21037/pm-25-8/rc

Data Sharing Statement: Available at https://pm.amegroups.com/article/view/10.21037/pm-25-8/dss

Peer Review File: Available at https://pm.amegroups.com/article/view/10.21037/pm-25-8/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://pm.amegroups.com/article/view/10.21037/pm-25-8/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. This study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by institutional ethics board of Taibah University (IRB# 00010413) and individual consent for this retrospective study was waived.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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