TĖVŲ, AUGINANČIŲ 1 TIPO CUKRINIU DIABETU SERGANČIUS VAIKUS, INFORMACIJOS PAIEŠKA IR DALIJIMASIS PATIRTIMI
INFORMATION SEARCH AND EXPERIENCE SHARING FOR PARENTS RAISING CHILDREN WITH TYPE 1 DIABETES

Summary/Abstract: The aim of the study is to identify the information needs and experiences of parents raising children with type 1 diabetes within the Facebook community. This study focuses on the experiences of parents raising children with type 1 diabetes who participate in a Facebook community to seek information and share experiences related to the disease. Type 1 diabetes is a chronic condition requiring continuous monitoring, daily decision-making and the active involvement of parents in disease management. Therefore, access to reliable information and support is essential to ensure effective disease control and maintain the child’s quality of life. In recent years, social media platforms have become an increasingly important source of health- related information and peer support for parents managing chronic childhood conditions. This article presents the results of a document analysis based on posts from a Facebook group for parents of children with diabetes, which was conducted using a case study method. The selected group met several criteria: it included healthcare professionals such as a diabetes nurse and a psychologist, as well as representatives of a diabetes association; it was actively moderated to ensure that shared information aligned with evidence-based recommendations; it united parents raising children with diabetes; and it demonstrated high activity, with approximately six to eight posts per day and more than 1,000 members. This context enabled theanalysis of informational and experiential aspects of communication within the community. Posts were collected from September 2023 to September 2024, resulting in 310 entries in total related to health topics. The study adhered to key ethical principles, including voluntariness, confidentiality, anonymity, and data protection. The name of the Facebook group was not disclosed to protect participants’ privacy. Data collection focused exclusively on health-related content, which was identified using keywords such as ‚health‘, ‚control‘, ‚nutrition‘, ‚physical activity‘, ‚emotions‘, and ‚help‘. The selected posts, along with their associated comments and responses, were categorised by theme and analysed using qualitative content analysis.Research questions: 1) What is the most relevant health information sought by parents raising children with type 1 diabetes in the Facebook community? 2) What experiences and practical advice do parents share on Facebook? The study adhered to the fundamental ethical principles of social science research, namely voluntariness, confidentiality, anonymity and data protection. As the research data was collected from a private Facebook group, permission to analyse the posts for scientific purposes was obtained from the administrators of the group prior to data collection. To ensure the anonymity of the study participants, all personal data and identifying characteristics (such as first and last names, usernames, and any other information that could reveal personal identity) were removed from the analysed records. The group‘ s name was not disclosed during the study to protect the privacy of community members. The collected data was used solely for research purposes.The findings revealed that parents actively seek and share information on several key areas of diabetes management, such as nutrition, physical activity, blood glucose control, insulin dosing, diabetes-related technologies and psychological support. These areas reflect the complexity of living with a chronic condition and highlight the need for practical and emotional support. The results suggest that social media communities not only serve as sources of information, but also as platforms for experiential learning and peer-to-peer knowledge exchange. Parents frequently exchange advice on dietary management, including calculating carbohydrates, fats and proteins, and meal planning. Discussions related to physical activity focus on its impact on blood glucose levels, suitable sports, and adjusting insulin during exercise. These findings suggest that parents actively seek practical, experience-based knowledge to complement formal medical guidance. Furthermore, parents often report applying the advice they receive within the community to real-life situations, thereby developing practical disease management skills. The study also highlights the importance of rapid information exchange within social media environments. Parents often receive responses within minutes, which is particularly important in situations requiring immediate decision-making. This immediacy helps parents to manage acute situations and boosts their confidence in dealing with everyday challenges associated with diabetes care. Furthermore, active participation in the community fosters health literacy and a sense of empowerment among parents.The findings emphasise the importance of emotional support provided within the community, beyond informational support. Parents share their personal experiences, express their concerns and seek reassurance from others who are facing similar challenges. This peer interaction reduces feelings of isolation and supports emotional adaptation to the child’s diagnosis, promoting acceptance of the chronic condition. The results suggest that social media communities play a significant role in addressing the informational and psychosocial needs of parents. A key finding of the study is the importance of content moderation and reliable information. In critical situations such as hypoglycaemia or hyperglycaemia, parents often seek immediate assistance and expect timely, accurate guidance. In these cases, group administrators — particularly healthcare professionals — provide evidence-based recommendations, helping to stabilise the child’s condition and reduce potential risks. This finding highlights that the quality and credibility of information are as important as its availability in online health communities. Furthermore, the study revealed a strong interest among parents in technologies that support diabetes management, including mobile applications, glucose monitoring systems and wearable devices. Discussions within the community help parents to make informed decisions about selecting and using these technologies, which can significantly improve disease control and daily management.In summary, social media can be a valuable source of health knowledge and skills for parents raising children with type 1 diabetes. Such communities can contribute to better disease management, helping parents to cope more easily with the daily challenges associated with their child’s condition. They can also foster positive attitudes in children regarding health maintenance and promotion, helping them to lead a high-quality life. The Facebook community serves several functions for parents, providing an opportunity to access relevant information, share experiences, receive emotional support and learn from the practical experiences of other parents. The results of the study allow us to view social media communities as significant environments for non-formal learning and health literacy education. However, it is important to ensure the reliability of information, so the participation of specialists in such communities is essential to provide high-quality support and ensure the information is used safely.

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