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Abstract
Objective The objective of this study is to explore the information needs related to insulin therapy in children and adolescents with type 1 diabetes mellitus (T1DM) from the children’s perspectives as well as their caregivers.
Design Qualitative study; semistructured interviews. To identify emerging themes relating to information needs, open coding and thematic analysis were employed.
Setting Participants were recruited from a tertiary care children’s hospital in Kuala Lumpur, Malaysia and a specialist hospital in Riyadh, Saudi Arabia.
Participants Thirty one children with a mean age of 11.5 years (SD=1.9) and their caregivers were interviewed. Seventeen participants were from Malaysia and 14 were from Saudi Arabia.
Results Four themes of information emerged from the interviews, including information related to (1) hypoglycaemia and hyperglycaemia, (2) insulin therapy, (3) injection technique and (4) other information needs pertaining to continuous glucose monitoring, access to peer groups and future advances in insulin therapy.
Conclusion This study provided valuable insights into the information needs related to T1DM and insulin therapy among children and adolescents with T1DM that should be considered by stakeholders in the development of age-appropriate education materials. Such materials will assist children and adolescents to better manage their life-long T1DM condition from adolescence until adulthood.
- information extraction
- community child health
- adolescent
- diabetes & endocrinology
Data availability statement
Data are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
This study was strengthened by the recruitment of participants from two countries and involved both children and their caregivers.
In-depth insights into information needs pertaining to type 1 diabetes mellitus (T1DM) and its management were obtained, which are vital in the development of age-appropriate education materials for children with T1DM.
As with other qualitative research, limitations included the subjective interpretations by the coders and recruitment of participants from a single centre in each country.
Potential response bias may have occurred as the child may have responded according to their caregiver’s preference since the interviews involving children were conducted in the presence of their caregivers.
Changes to meaning can occur during the process of translating the interview guide to different languages; however, this was overcome by piloting them on a few participants to ensure comprehension and appropriateness.
Introduction
The incidence of type 1 diabetes mellitus (T1DM) is increasing in many countries at a rate of 1.8% annually.1 Globally, approximately 1 211 900 children and adolescents younger than 20 years are living with T1DM, with an estimated 108 300 children under 15 years diagnosed in 2021.2 In Malaysia, 977 cases of T1DM were reported among children aged 0–19 years in 2019.3 4 In comparison, the prevalence of T1DM in Saudi Arabia has increased rapidly over the last three decades. The WHO ranks Saudi Arabia as having the second highest prevalence of T1DM in the Middle East, as well as the seventh in prevalence and fifth in incidence worldwide.3 4
Based on the Malaysian Diabetes in Children and Adolescents Registry (Di CARE), a mean glycated haemoglobin (HbA1c) of 10.8% was reported among local children and adolescents with T1DM, which indicated poor glycaemic control among this population.5 Moreover, several studies reported that diabetic ketoacidosis (DKA) at diagnosis of T1DM has been persistently high in Malaysia, in fact, the highest among Western Pacific region countries.6 7 Similarly, Saudi Arabia was also one of the countries with the highest rates of DKA at diagnosis of T1DM (59%).8 In addition, several studies from Saudi Arabia reported highlighted poor glycaemic control as reflected by high HbA1c levels and increased prevalence of DKA among children and adolescents with T1DM.9–11
Children and adolescents with T1DM need to follow a structured self-management plan that incorporates appropriate insulin use, blood glucose monitoring, adequate physical activity and a healthy balanced diet to ensure good glycaemic control and prevent diabetes-related complications.2 However, self-management activities remain suboptimal among this group of patients in many countries, including Saudi Arabia and Malaysia.12 13 A joint position statement of the American Diabetes Association, the American Association of Diabetes Educators, as well as the Academy of Nutrition and Dietetics, defined Diabetes Self-Management Education (DSME) as the process of facilitating the knowledge, skills, and ability that are necessary for diabetes self-care.14 DSME has been advocated as an essential component in diabetes therapy and an effective tool in reducing HbA1c levels among patients with T1DM.14 15
For children and adolescents with T1DM to make appropriate decisions and practise effective self-management concerning their illness, it is vital to develop a sufficient level of age-appropriate education material that centres on disease and therapy-related information.14 16 This is an important component in the approach to empower young people to apply relevant knowledge and practical skills in problem-solving and self-care for better diabetes management. Essentially, they will be equipped with the ability to make better decisions and take care of themselves concerning their conditions.17–20
To provide needs-driven information, a deeper insight to gain the perspectives of children and adolescents with T1DM is needed. Principally, information provision, self-management and health outcomes of medical condition can be improved if the perspectives and needs of those patients can be elicited.21 Therefore, this study aimed to explore the information needs related to insulin therapy among children and adolescents in Malaysia and Saudi Arabia with T1DM from the perspectives of the children and their caregivers. The information obtained can assist the development of suitable interventions, especially age-appropriate education materials with the aim of empowering children and adolescents with T1DM to better manage their conditions from young.
Methodology
Study design and participants
This qualitative study was based on online or face-to-face semistructured interviews using an interview guide (online supplemental appendix 1) that was developed based on literature reviews and discussion among research team members. The participants were recruited from two hospitals, namely Universiti Kebangsaan Malaysia Children’s Specialist Hospital (HPKK UKM), a tertiary care paediatric referral centre in Malaysia with 243 inpatient beds, and King Faisal Specialist Hospital and Research Centre (KFSH&RC) in Riyadh, Saudi Arabia, an internationally recognised tertiary healthcare facility with 1600 beds. Patients or the public were not involved in the design, or conduct, or reporting or dissemination plans of the current research.
Supplemental material
A purposive sampling was used to recruit T1DM children and adolescents between 9 and 15 years old, as well as their caregivers. This age group was chosen following the recommendation of a paediatrician in one of the study centres based on her experience in dealing with T1DM children. Furthermore, the literature showed that most children were encouraged to start learning diabetes self-care practices from 8 years old.22 On the other hand, adherence to diabetes self-care and glycaemic control usually decrease by the time they reach adolescence (mean age of 15 years).23 Therefore, we included only children and adolescents between 9 and 15 years old in this study.
To be eligible for inclusion, the child must be diagnosed with T1DM and receiving regular insulin therapy for at least 3 months. The children and their caregivers must be willing to participate in the study and able to communicate in English, Malay or Arabic language. Potential participants were identified by the paediatricians at each centre. An invitation to participate in this study was sent to the caregivers via WhatsApp with a brief explanation of the study. An interview date was scheduled with those who expressed interest in participating. Prior to the interview, a patient information sheet was shared to explain the study before the consent for participation and audio recording was obtained from the participants. Parental consent was also obtained for their child to participate in this study. Online interviews were conducted using the Google Meet platform, while face-to-face interviews were held at the respective clinics of the study centres. Each interview took 30–40 min and was audio recorded. Interviews were conducted among the caregivers of children with T1DM and the child as well, whenever possible. Interviews conducted with the children were done together with their caregivers.
Data collection and analysis
The interviews were conducted by the principal investigator (SM) and another team member (NFMA). A semistructured interview guide was prepared in English language and translated into both Malay and Arabic languages. The translated interview guide was pretested on two patients whose inputs were not included in the final analysis.
The recorded interviews were transcribed verbatim by a certified transcriber and checked by two members of the research team (NFMA and SME). Transcription and analysis were done simultaneously with the interviews. Interviews conducted in Malay and Arabic languages were translated and coded into English. The anonymity of participants was ensured by assigning a study code to each participant.
Patient recruitment was stopped once data saturation was achieved, that is, when (1) no new or relevant data seem to arise regarding the theme, (2) the theme is well developed and reveals variation and (3) the relationships among themes are well established according to Strauss and Corbin.24 Based on these criteria, the investigator (SME) decided when no new data that would add new information emerged and confirmed the point of data saturation with another investigator (NMS).
Qualitative content analysis was conducted following the six steps of thematic analysis described by Braun and Clarke,25 namely (1) familiarising with data; (2) generating initial codes; (3) searching for themes; (4) reviewing themes; (5) defining and naming themes and (6) producing the report. Initially, the researchers (SME and NFMA) read and reread the transcribed data several times to familiarise themselves with the data. The data were then coded by each researcher independently and then organised based on a list of different codes that were identified in the data material. After that, the researchers met to sort the codes into a range of possible aspects and patterns before discussing the best way to combine different codes under the same theme. Based on the discussion, some codes were modified and become new codes, and subthemes were also created. The theme with the subthemes was reviewed and renewed until a consensus was reached on the final theme and subthemes. ATLAS.ti Windows V.22.2.5.0. was used for data analysis.
Patients and public involvement
This study was initiated by the research team members as part of a larger study to develop an interactive education material on insulin therapy for children and adolescents with T1DM. Findings related to the information needs on insulin therapy from children and adolescents in this study will be utilised in developing the education material. The interview guide used in this study was piloted among few patients and their caregivers to determine its understanding and appropriateness. Suggestions made by the participants in pilot study were taken into consideration in refining the interview guide.
Results
Demographic data
A total of 33 children and their parents expressed an interest in participating. However, two of them were uncontactable. The remaining 31 children (17 males and 14 females) reported a mean (±SD) age of 11.5 (1.9) years. Their median (IQR) duration of T1DM diagnosis was 3 (2) years and their mean (±SD) HbA1c was 9.72% (2.7). A total of 31 parents were interviewed along with their children, of which 22 (71%) were mothers and 9 (29%) were fathers. A total of 17 children were from Malaysia (HPKK UKM) and another 14 children were from Saudi Arabia (KFSH&RC). All children were receiving a combination of rapid-acting insulin and long-acting insulin at the time of the study. Table 1 outlines the sociodemographic characteristics of the participants.
Sociodemographic variables for study participants (n=31)
Themes and subthemes
Four main emergent themes were identified consistently throughout the interview data while analysing the transcripts of interviews: information related to (1) hypoglycaemia and hyperglycaemia; (2) insulin therapy ; (3) injection technique and (4) other information needs. Table 2 summarises all 11 minor subthemes within these four themes. The themes and subthemes are described in further detail below.
Themes and subthemes of the information needs in children and adolescents with T1DM
The quotes are contextualised with the demographic information in brackets, that is, for the children; child number (Cn), age (number) and country (Malaysia/ Saudi Arabia), and for the caregivers; caregiver number (Cns), caregiver (mother/ father) and country (Malaysia/ Saudi Arabia).
Hypoglycaemia and hyperglycaemia
Most of the children were not aware of the signs and symptoms of both hypoglycaemia and hyperglycaemia. They were also unsure of how to differentiate between both conditions and the best ways to manage them.
Recognising hypoglycaemia and hyperglycaemia
Some children expressed clearly their need for this information.
Need to know about hypo and… high reading, … how to know …, if its hypo or aaa hyper. (C3/9/Malaysia)
Other children claimed they developed hypoglycaemia but with different signs and symptoms or only one distinctive sign or symptom. Parents also expressed their worries regarding this issue.
I only feel hungry. (C8/11/Malaysia)
She feels hungry only, nothing else. (C25s mom/Saudi Arabia)
I only feel dizzy and sometimes I fall asleep during the class. (C24/11/Saudi Arabia)
At that day after he finished playing football he felt he… he said he felt funny, then he aaa… checked (his) blood (again), ummm…his blood (reading) was low……… am a bit worried I don’t know what he meant by feeling funny. (C5s mom/ Malaysia)
How to know if its hypo or hyper, we need to know…… she feels tommy pain only when she has high level, and she feels dizzy when low levels, sometimes she…. she feels sleepy, I told her not to inject at school, she might develop low glucose level, is that correct? (C18s mom/Saudi Arabia)
She needs to know the early signs of type 1 diabetes complications hypo and hyper. (C4s mom/Malaysia)
Differentiating hypoglycaemia and hyperglycaemia
Some children voiced out their inadequate knowledge about the signs and symptoms of hypo/hyperglycaemia. They were also confused about both conditions.
When hypo….I feel like, aaa… I feel like, I feel light, like lightheaded in somewhere. If… I feel like I don’t have a heart. Like the way that my heart is kinda near my chest. I don’t I don’t feel like there’s anything inside. And it also feels like more prone to running faster, which take, which hypoglycemia feels like hyper. It’s it’s it’s supposedly to be hard, they’re basically mixed. They literally swapped places. (C7/13/Malaysia)
Don’t know exactly the symptoms, sometimes got confused. (C28/10/ Saudi Arabia)
I feel dizzy and dryness in my throat, is this hypo or hyper? (C20/12/ Saudi Arabia)
Managing hypoglycaemia and hyperglycaemia
Furthermore, some parents reported the need for the information on how to manage both hypo/hyperglycaemia conditions.
He needs to know about the early symptoms of hypo and hyperglycemia is important to know and also how to manage in both cases. (C12s mom/ Malaysia)
Insulin therapy
The importance of insulin
Almost half of the children requested more information about the importance of insulin to their bodies.
My pancreas doesn’t secrete insulin, the injections I take are to help my pancreas to secret insulin, but why my body needs it? (C27/12/Saudi Arabia)
Parents also stressed the need to educate their children about the importance of insulin and the significance of adhering to insulin therapy.
I think they need to know why it is important for them to take the insulin. (C2s dad/ Malaysia)
I want him to understand what insulin is all about, why his body needs insulin. (C7s mom/Malaysia)
She refuses to take the insulin; she thinks it is not important to inject it. (C19s mom/ Saudi Arabia)
He needs to improve his awareness about the importance of insulin. (C23s mom/Saudi Arabia)
Carbohydrate counting and dose adjustments
Most of the children needed more information on how to count carbohydrates as many felt that the process was complicated.
How to calculate the carbs in my meals, I don’t know. (C28/10/Saudi Arabia)
How to count the carbs? I really don’t know how to count carbs; the doctor told me several times but it’s complicated. (C30/13/Saudi Arabia)
This was concurred by some parents who expressed the need to know more about counting carbs and insulin dose calculation for their children’s meal preparation.
We need to know how to calculate the dose based on the calories then inject. (C23s mom/Saudi Arabia)
Another parent expressed their worries on the possible wrong calculation of carbohydrate intake as they sometimes guess or estimate the content.
What she does is guess basically, ……… But sometimes she guesses wrongly. (C3s mom/Malaysia)
We still have hyper or hypo because sometimes we calculate wrongly. (C7s mom/Malaysia)
Some children and parents understood the importance of carbohydrate counting as a tool to optimise glycaemic control, but they admit that they were not practising it.
I know it is important to count carbs but honestly; we don’t do now. We used to count carbs before, but…. aaa, wrongly most of the times, now we guess it only. (C17s mom/ Malaysia)
I don’t strictly analyse my diet, maybe it is important but, aaa, I didn’t do before, I never did. (C5/14/Malaysia)
Storage of insulin
A few children showed uncertainties regarding the correct way to store insulin.
In terms of the storing injections we usually store them in the room temp, yes all insulin. (C5/14/Malaysia)
May be in the fridge. (C24/11/Saudi Arabia)
Rarely in the fridge. (C7/13/Malaysia)
One parent claimed that he collected insulin from the pharmacy early in the morning but kept them in the car for several hours until the time when he returned home in the evening.
I go to the pharmacy early morning before going to my work, collect my daughter’s insulin, leave it in the car till I return back home in the evening, will that affect its use? (C19s dad/Saudi Arabia)
Injection technique
Following injection steps
From the interviews, some children demonstrated a lack of knowledge regarding the right steps of insulin injection.
No, I don’t use alcohol swab, I just inject. (C8/11/Malaysia)
Needle, needle I don’t change (the needle), if it’s painful then only …only when I feel pain, I will change the needle. (C19/12/Saudi Arabia)
One child claimed that the nurse taught him about the injection technique only once and he had to search for more information on YouTube.
Yes; the nurse taught me once how to inject insulin, I tried to see in YouTube as well. (C30/13 Saudi Arabia)
The importance of self-injecting and to reduce reliance on the caregiver
Almost half of the children were still relying on their parents to inject insulin. Furthermore, some parents claimed that they had to go to their child’s schools every day to give the insulin injection.
My husband and I, both of us, no he (the child) is not involved. (C11s mom/Malaysia)
My mom comes with me and inject me at school, I don’t know how to inject myself. (C25/10/ Saudi Arabia)
I go every day by 9 am and inject her, she doesn’t know how to inject. (C31s mom/Saudi Arabia)
Many parents also expressed their desire for their children to learn the steps and take the responsibility of injecting insulin themselves.
Also; I want her to start injecting herself. I want her to take her own responsibilities, but I don’t know how to start doing that. (C29s mom/Saudi Arabia)
Other information needs
Continuous glucose monitoring (CGM)
One of the parents suggested the need to provide more information about continuous glucose monitoring (CGM) and how to use it as it is helpful for glycaemic control.
I need to know more about CGM, I heard it will control her glucose level in a better way. (C10s mom/Malaysia)
One of the parents shared his experience with CGM in which he felt that sufficient information about CGM would encourage the application of CGM.
He wore it for fourteen days; we couldn’t use it for longer. Aaaaa a CGM system? maybe if we know more about it, we can use for him. (C9s mom/Malaysia)
Access to peer support group
Peer support groups were also mentioned as an important source of information.
But I think if the children …. If they can have their own group, to share their worries …that would be great. (C11s dad/Malaysia)
I want, want extra access like support group, I don’t know, maybe there is a support group among the HUKM patients. (C13s dad/Malaysia)
Future advances in insulin therapy
Two children were asking about the latest updates on T1DM therapy.
What about the stem cells researches any good news, is there any hope? (C7/13/Malaysia)
And also, I want to see a synthetic pancreas that I can hold and no more injections are needed. (C28/10/Saudi Arabia)
Discussion
Four main themes related to information needs among children and adolescents with T1DM were identified in this study, namely information on (1) hypoglycaemia and hyperglycaemia; (2) insulin therapy; (3) injection technique and (4) other information needs. In general, similar information needs emerged from children and adolescents in Malaysia and Saudi Arabia as well as their respective caregivers.
In this study, the children and adolescents portrayed a lack of knowledge in recognising the signs and symptoms of both hypoglycaemia and hyperglycaemia. They also faced difficulties in differentiating both conditions. Similar studies in Egypt and Malawi reported that children with T1DM showed inadequate knowledge regarding diabetes complications, management of hyperglycaemia, as well as differences in signs and symptoms of hypoglycaemia and hyperglycaemia, all of which contributed to poor glycaemic control.26 27 For example, some children in this study claimed that they experienced hypoglycaemia with different signs and symptoms or with only one sign or symptom. This can be explained by the Impaired Awareness of Hypoglycaemia (IAH) phenomenon. Children and adolescents who experienced frequent hypoglycaemia may suffer from defective counter-regulatory hormone responses, thus resulting in a reduced sensation of hypoglycaemia, a condition known as IAH. This affects approximately 20%–25% of people with T1DM and diminishes their ability to detect the onset of acute hypoglycaemia, subsequently increasing the risk of severe hypoglycaemia.28
From the parental perspective, many parents emphasised the need for their children to understand the importance of insulin injection. Healthcare professionals should ensure that children and adolescents with T1DM are provided with adequate knowledge regarding their disease and insulin therapy to improve adherence to clinical management.29 Poor glycaemic control among children and adolescents can also be explained by physiological and hormonal changes during puberty, a period linked to increased adiposity and insulin resistance, as well as behavioural and adherence issues. All of these can contribute to suboptimal glycaemic control.30 In addition, the difficulty for children and adolescents with T1DM to achieve the recommended HbA1c has also been linked to the inability to self-manage the disease in terms of insulin dosing, administering insulin, monitoring glucose levels throughout the day, as well as maintaining appropriate diet and physical activity.31
Furthermore, most of the children and the parents expressed their need for information on counting the carbohydrate content (grams) in a meal and matching that to their insulin dose. Among intensively treated youth with T1DM, carbohydrate counting knowledge has been associated with a lower HbA1C level.32 A study from China reported that one-third of T1DM patients had never been taught carbohydrate counting and how to match it with insulin dosing.33 Another study reported that less than one-third of the participants showed a good knowledge of the insulin-to-carbohydrate ratio and insulin sensitivity factor. The main attributing factor was found to be a lack of training on these aspects by the healthcare providers.34
Next, several children showed uncertainties regarding the correct way of insulin storage. Diabetic patients and their caregivers should be educated about the recommended variations in the temperature and duration of insulin storage to ensure its efficacy.35 Lack of knowledge regarding the correct steps and technique of injecting insulin was also observed among the study participants, similar to findings from other studies worldwide.36–38 The need for adequate training on how to inject insulin correctly was also raised in this study. A multicentre study in China concluded that poor practices that resulted from insufficient insulin education could be attributed to healthcare professionals’ lack of training, unfamiliarity with guidelines, lack of time and absence of appropriate educational tools.34 Many children in this study were still relying on their parents for insulin injections. Parents, on the other hand, expressed a desire for their children to be responsible for self-injecting insulin. However, they were unsure of how to achieve that. A study in the Netherlands highlighted the challenges faced by parents of children with T1DM in identifying the right division and transfer process of diabetes care responsibilities to their child.39
In this study, some parents suggested the need for CGM to be taught as they perceived it as a useful tool to improve their child’s glycaemic control. A study from the USA reported that despite increasing awareness of CGM, it remains underutilised.33 Studies have shown that children educated on CGM showed an early improvement in glycaemic outcomes and a significant reduction in the duration of hypoglycaemia.40 41 Moreover, some parents expressed the benefits of peer support groups to supplement the necessary information for children with T1DM. Implementation of peer education can improve self-care behaviours and HbA1c in adolescents.42 43 Two children in this study enquired about new T1DM therapies, including the availability of advanced treatment that can replace the lifelong use of insulin injections. Therefore, it is crucial to share ongoing research and growing evidence of new treatment approaches to enhance therapeutic outcomes in children and adolescents with T1DM.44 45 Nonetheless, it is equally important to emphasise the need for lifelong administration of exogenous insulin as it remains the approved treatment for T1DM.46
Conclusion
The themes and subthemes identified from this study highlighted the important information needs of children with T1DM and their caregivers. This includes information on the recognition of the signs and symptoms of hypoglycaemia and hyperglycaemia, as well as disease management such as insulin therapy, injection technique, CGM, access to peer groups and future advances in insulin therapy. In summary, this study provides valuable insights into the information that should be incorporated into age-appropriate education materials that can help children and adolescents with T1DM to manage their lifelong conditions.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
Ethical approval was obtained from the Ethical Review Committees of both UKM (UKM PPI/111/8/JEP-2022-046) and KFSH&RC (RAC no. 2231015). Informed consent was obtained from each participant prior to the interview.
Acknowledgments
The authors thank the study participants for sharing their experiences.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors SME and NFMA conducted and analysed the interviews. AMR, SAAA and NMS contributed to designing and planning the study, and writing and reviewing the manuscript.
NMS and SME are the guarantors for this work. JH, CXY, BSB-A and AA assisted in patient recruitment and reviewing the manuscript.
Funding This work was supported by Novo Nordisk Pharma (Malaysia) Sdn. Bhd. grant number (NF-2022-002).
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.