The diagnosis of T1DM, among adolescents, is regarded as a demanding chronic condition, which often causes them physical and psychological discomfort as they attempt to navigate through the disease management (Kerimoğlu Yildiz, Ates Besirik & Azak 2026). In addition, a recent study affirms that managing T1DM in adolescents is challenging because of the physical, sexual and neurological development these individuals undergo (Bombaci et al. 2024). Unlike adults who have developed coping mechanisms for living with diabetes mellitus, adolescents often experience difficulties in living with and managing this chronic condition while navigating through developmental, physiological and emotional changes associated with adolescence (Hadad, Ali & Sayed 2021; Nyanful et al. 2026). This turbulence frequently exposes them to diabetes burnout, non-adherence to their treatment regimens and psychological discomfort, which negatively impacts their health outcomes (Azar et al. 2024; Orbea Cevallos et al. 2026). Despite the availability of clear guidelines and protocols globally for promoting metabolic control, the lived experiences of adolescents remain poorly understood and under-researched, especially within local healthcare settings (Le Roux et al. 2026; Morandi et al. 2024). Based on the literature above, without understanding the lived experiences of adolescents diagnosed with T1DM, there will be no contextual evidence to guide the development of supportive interventions these adolescents might need. The exploration of the subjective realities of these adolescents is therefore imperative to prevent potential health complications, identify and reduce psychological discomfort and empower adolescents to engage in effective, autonomous self-management.

This study was guided by Dorothea Orem’s Self-Care Deficit Nursing Theory (2001), which was applied to explore and describe how adolescents experience living with T1DM as a chronic condition. The literature supports the relevance of Orem’s self-care deficit nursing theory for improving self-care practices among children and adolescents living with chronic conditions such as T1DM (Isik & Fredland 2023; Nkabinde-Thamae 2021; Nkabinde-Thamae & Downing 2024). This framework embraces three relevant constructs, such as self-care (adolescents’ daily management of T1DM, insulin administration, adherence to diet plan and blood glucose monitoring), self-care deficit (the developmental changes adolescents experienced, experiences of diabetes burnout, injection site reactions) and lastly the nursing systems (the support provided by nurses and doctors or even external such as family and friends). These constructs guided the study’s interview guide, providing the researchers with insight not only into the clinical aspects of this condition but also into adolescents’ daily self-care agency.

The study aimed to explore and describe the lived experiences of adolescents living with T1DM.

The study was qualitative and utilised a phenomenological approach. The design is suitable because participants provide information-rich descriptions of living with diabetes as they experience and understand it daily. This approach assisted in exploring and describing insights into various occurrences while collecting participants’ experiences, perceptions and behaviours that are essential for the study at a particular moment (Polit & Beck 2020).

The study was conducted within the public healthcare sector of the Ekurhuleni Eastern Sub-District, located in the Gauteng Province of South Africa. Three tiers of care include health care institutions such as Primary Health Care (PHC) clinics, Community Health Centres (CHCs) and the Outpatient Departments (OPDs) of public hospitals. Data collection was limited to operational hours, specifically between 08:00 and 16:30. These settings were purposively selected because these public healthcare facilities are the primary points of care where adolescents access healthcare services, including the management of the chronic condition T1DM. Sampling across these three tiers provided a comprehensive view of adolescents’ lived experiences, capturing both local community care and specialised care within a hospital setting.

A non-probability purposive sampling method was employed to select participants for this study. This approach was selected to recruit individuals with rich, firsthand lived experiences and the ability to provide valuable insights into living with T1DM, thereby addressing the study’s specific aims and objectives. To ensure rigorous sample selection, specific inclusion and exclusion criteria were established (Polgar & Thomas 2019). The detailed breakdown of these criteria is presented in Appendix 1, Table 1-A1.

The primary author conducted individual, face-to-face, semi-structured interviews from November 2023 to September 2024 to explore the lived experiences of adolescents living with T1DM. Data collection began only after receiving institutional ethical clearance, allowing the researchers to recruit relevant participants by distributing posters and flyers that included details of the study and the primary researcher’s contact information. These materials were hand-delivered by researchers to the designated healthcare institutions for display and distribution. The data collection process was facilitated by a central question, ‘What are your experiences living with type 1 diabetes mellitus?’, which allowed participants to freely share their experiences. In addition, the interview guide (Appendix 1, Table 2-A1) was employed to prompt discussions on key areas of interest, allowing the researchers to probe for deeper meaning in the phenomenon. To elicit deeper understanding, communication strategies such as probing, paraphrasing, active listening and summarising were used, allowing the researcher to clarify and explore nuances without leading the participants (Mabunda, Masondo & Mokoena-de Beer 2025; Nkabinde-Thamae & Downing 2026). The interviews were conducted in English and lasted for approximately 45–60 min. The interviews were conducted in a private room at the different institutions during scheduled appointment times or at an alternative location and time deemed convenient by the participant to ensure privacy and accessibility. Upon receiving participants’ consent, the interviews were audio-recorded, and participants’ nonverbal cues and body language were observed and documented in field observation notes, along with facial expressions, which are often lost in audio recordings. Two pilot interviews were conducted to pre-test the newly developed semi-structured interview guide and evaluate the researchers’ communication skills; however, no discrepancies were detected. The pilot data were excluded to prevent bias, maintain data consistency and uphold the rigour of the primary study. Data saturation, defined as the point at which no new information was elicited after the 10th interview, was confirmed by interviewing two additional participants (Nkabinde-Thamae & Downing 2025). The sample size of 12 participants was deemed appropriate, as it enabled a comprehensive exploration of participants’ experiences while maintaining depth and methodological rigour. This approach is consistent with established qualitative research principles, which prioritise depth, context and meaning over numerical representation. Although the study was conducted across clinics and hospitals that could yield a larger pool of participants, inclusion was guided by purposive sampling criteria to ensure that participants had direct, relevant experience with the phenomenon under investigation (adolescents living with T1DM).

A professor of nursing with extensive experience in qualitative research analysed the data and met with the researchers to reach consensus on the identified themes. Giorgi’s descriptive thematic data analysis stages were employed (Giorgi, Giorgi & Morley 2017; Nene 2021). In stage 1, the researchers independently read all 12 transcripts to derive meaning from them. Thereafter (stage 2), the researchers grouped the 12 transcripts together using non-ambiguous language to indicate their intended meaning and perception. Subsequently, in stage 3, themes were generated using clear, descriptive words, which assisted the researchers (stage 4) in making sense of the data and in creating significant statements, thereby helping determine the themes relating to the experiences of adolescents living with T1DM.

This study was approved by the Biomedical Research Ethics Committee of the University of KwaZulu-Natal (Reference number: BREC/00005790/2023). To access participants, the researchers formally requested approval from the Research Committee of the City of Ekurhuleni, and approval was granted by the Chair and Deputy Chair of the Committee (Reference number: 30/092023/01). The researchers furthermore had to register this study with the National Health Research Database (NHRD) for approval (Reference number: GP_202310_038). During the information session, the primary researchers explained the aims, objectives and potential risks of the study to participants. Despite the participants being of legal age, they were allowed to seek approval from their parents or any individual they regarded as a legal guardian. The primary researchers informed all participants that confidentiality, privacy, justice, anonymity and all other ethical principles would be upheld throughout the research process (Khuzwayo & Mkhize 2025; Mashazi et al. 2025; Tukisi 2024; Tukisi et al. 2025; Zondi & Mkhize 2025).

In this study, the researchers promoted trustworthiness as follows: (1) Credibility was promoted through prolonged engagement, as data were collected from November 2023 until September 2024. Triangulation was achieved through multiple sources, including individual interviews, field notes and audio recordings. In addition, credibility was strengthened because the data analysis was conducted by a full professor in nursing with extensive knowledge and skills in qualitative research. Moreover, S.W.M. provided peer support and guidance, as he is a senior lecturer with a PhD and widespread experience in qualitative research. In addition, the researchers conducted member checking with the participants at an appropriate time, confirming telephonically whether the identified themes reflected their lived experiences of living with T1DM. (2) Transferability is apurposive sampling method, a clear description of the participants’ demographics and the research setting, as well as an in-depth description of the research methodology, promoted transferability of the study. (3) Dependability was enhanced by the clear and explicit discussion of the study results. (4) Confirmability was promoted by appropriate and relevant references. In addition, the researchers wrote reflexive notes that assisted them in reflecting on the participants’ experiences of living with T1DM. This helped them avoid bias, enhancing the objectivity of their findings by setting aside their own feelings, views and perceptions regarding the lived experiences of adolescents with T1DM.

Participants described profound emotional challenges, stress and anxiety associated with living with T1DM. The verbatim quotes below give a clear lens into this theme.

Participants in this study shared their daily routines for managing diabetes mellitus, which involved administering insulin as prescribed by a medical practitioner. However, they experienced challenges and some discomfort in administering the injections on time, and they felt the injections caused pain and discomfort or pain at the injection sites.

The participants consciously isolated themselves from their peers, believing they were protecting themselves from possible negative attitudes (stigma and discrimination). In addition, participants reported that when with their peers, they were at risk of engaging in activities that could negatively affect their health.

Other participants added:

The absence of emotional and practical support was a recurring theme, leaving participants feeling solely responsible for managing their condition. They yearned for a more profound support system from the healthcare system and their families. In addition, participants expressed the need for modernised interventions to test their glucose levels and administer insulin.

This study provided insight into the lived experiences of adolescents living with T1DM. It revealed the daily challenges they encountered, which directly impacted their quality of life. The findings of this study may support better clinical management of adolescents with T1DM. This study was conducted solely through in-depth individual interviews with 12 adolescents living with T1DM, as data from the pilot interviews (two participants) were excluded from the analysis. Adolescents living with T1DM who accessed private hospitals or health facilities could have benefited from a larger sample, which may have contributed to this phenomenon. In addition, the researchers did not have a plan to follow up with participants who were referred for counselling to maintain continuity of care.

The results that unveil the emotional impact the chronic condition T1DM had on these participants indicate a need for in-depth research to be done on the emotional well-being of adolescents living with T1DM. In addition, research such as recommendations to improve the quality of life and experience of adolescents living with T1DM can be undertaken.

The findings of this study revealed that adolescents living with T1DM struggled to adapt to their daily routines. Theme 1 specifically revealed the emotional and psychological struggles the participants experienced because of living with T1DM. Policies at the national and provincial levels need to be extensively developed and implemented to cover the psychological well-being of adolescents living with T1DM and to include guidance on how professional nurses and other healthcare workers should screen and assess adolescents’ mental well-being during subsequent visits.

Considering the findings of the study, it appears that adolescents living with T1DM find it extremely difficult to live with this chronic condition. Healthcare institutions, including primary healthcare facilities, should be more sensitive to these adolescents when they visit.