Developing Self-Management in Type 1 Diabetes at Secondary Schools: Who Is Responsible? A Qualitative Study

Research Design and Procedure

This qualitative study rests on a pragmatic worldview (Creswell, 2014) and is the second phase of a mixed-methods study with a sequential explanatory design. It received ethics approval from the Human Research Ethics Committee of Children’s Health Queensland (LNR/18/QCHC/46374). Use of reflexive thematic analysis (Braun & Clarke, 2022) enabled both a descriptive and interpretative analysis of adolescents’ perspectives of responsibility-sharing through the identification of patterns of commonality in the data. We followed the Consolidated Criteria for Reporting Qualitative Research guidelines (Tong et al., 2007) when reporting the qualitative methodology.

Participants were identified by a diabetes educator working in the endocrinology clinic of a major metropolitan hospital in Australia. Purposive sampling included adolescents with T1D who had diverse treatment regimens and schooling types and met the inclusion criteria: age 15 or 16 yr, attending a mainstream high school, and with no concomitant disability. The diabetes educator sought parents’ consent to be contacted by phone by Lisa Gardener, who explained the study and invited parental consent for their adolescent’s involvement. Adolescents were then contacted directly for their assent to participate.

Participants

Eleven adolescents (all Caucasian, with six identifying as female and five as male), representing a mix of diabetes regimens (insulin pump, multiple daily injections, and/or continuous glucose monitor) and schooling types, participated (Table 1).

Data Collection

Semistructured interviews of 45–75 min duration were conducted via participants’ choice of phone call, Zoom, or in person (see Appendix). Interviews were audio recorded. Recordings were transcribed verbatim and deidentified, and then transcripts were compared with recordings to ascertain accuracy. Recruitment continued until the research team, through constant comparison of data during collection, agreed that a point of substantial information power (Malterud et al., 2016) had been reached. This was determined by data that sufficiently addressed the research questions, given the focus on identifying pragmatic issues relating to self-management, the homogeneous participant sample, and high-quality dialogues with participants.

Data Analysis

Lisa Gardener undertook all data collection. The coauthors who collaborated in the analysis were female academic occupational therapists with doctoral qualifications and extensive experience in qualitative research. Two authors have lived experience of parenting adolescents with T1D attending school. After the first five interviews, Lisa Gardener and Helen Bourke-Taylor engaged in collaborative first-round coding, and then Lisa Gardener analyzed all transcripts using NVivo (Version 12). Throughout the analysis, she continued an iterative cycle of coding and reflection and met regularly with all of the coauthors to discuss assumptions that were possibly influencing this process and to clarify the identification of meaningful themes.

Trustworthiness was enhanced through methodological triangulation by integrating the insights gained from the cross-sectional survey analysis into the analysis of qualitative data. Credibility was further supported by having two researchers independently code the initial data set and holding ongoing peer debriefings in addition to research team meetings. Dependability of findings was strengthened by recording the evolving analysis, through both collation of the NVivo-supported analyses (e.g., mind maps) and team meeting documentation. To enhance confirmability of the data, Lisa Gardener reflexively journaled her observations, assumptions, and decision-making throughout. Transferability was considered through the provision of thick descriptions of the research process and findings (Nowell et al., 2017).

Theme 1: Responsibilities Are Formally and Informally Arranged

This theme reflects adolescents’ perceptions that responsibilities for school-based DSM were both formally (in the form of school plans) and informally (through communications with parents and school staff) arranged.

Theme 2: Considerations for the Sharing of Responsibility

This theme reflects intentional adolescent management of their own school-based diabetes responsibilities.

Theme 3: Taking Care of Diabetes Means Missing Out on School

This theme reflects the adolescents’ perspective that the impact of current diabetes care arrangements translated to reduced school participation.

Arrangement of Responsibility for DSM

Consistent with studies that have examined chronic health management in the family context (Chung et al., 2020 ; Nightingale et al., 2019), arranging responsibility for DSM at school was perceived to occur largely as a function of an interdependent parent–adolescent partnership that was based on regular communication that was highly responsive to difficult situations. This supports the conception of DSM as a co-occupation in the school context with the understanding that sharing communication, emotionality, and intentionality can define co-occupation, even when participants are not physically sharing task performance (Pizur-Barnekow & Pickens, 2019).

Adolescents’ heavy reliance on the parent–adolescent partnership meant daily responsibilities were generally not perceived as shared with the wider team, such that decisions about reducing school participation were often made without clinical or educative oversight (e.g., leaving school early or not attending a camp). Adolescents reported that their parents’ sense of worry about diabetes was greater than their own; this corroborates other qualitative findings that adolescents and parents have unique perceptions regarding diabetes care priorities (Spencer et al., 2013). One cross-sectional study found that substantial dissimilarity between illness perceptions of parents and adolescents with T1D, together with low levels of school support, was associated with poorer quality of life (Almeida et al., 2020), which suggests these are important targets for intervention.

Overall, parents were seen as responsible for organizing formal procedures for diabetes management (e.g., school plans), whereas adolescents arranged support on the go, as needed during the school day. This meant that adolescents did not share responsibility for the final determination of school-based DSM strategies even though they were primarily responsible for the enactment of these strategies at school. This division of responsibilities may not play to adolescents’ cognitive strengths. A literature review found that, compared with adults, adolescents are highly creative and fast thinkers, although their decision-making performance is hampered in emotional contexts (Casey & Caudle, 2013). Herlitz et al. (2016) argued that adolescents are therefore more suited to deliberative, rather than in-the-moment decision-making. This lends support to the importance of including students in formal school planning.

The allocation of responsibility to parents, for the structuring of formal diabetes support, may explain the commonly reported finding that, despite the fact that a formal school plan is generally mandated, many adolescents perceived that they did not have one (McCollum & O’Grady, 2020). Participants who knew of their school plans viewed them as emergency advice for teachers, which is at odds with the broad recommendation that the school plan should be used to clarify stakeholder responsibilities, determine support for psychosocial issues, and manage environmental barriers (Jackson & Albanese-O’Neill, 2016). Clarified team roles and responsibilities have been reported as fundamental to effective sharing of responsibility with adolescents with T1D (Olinder et al., 2011). Although analyses of co-occupation with adolescents are minimally present in the literature, clear roles have been reported as important to the functioning of co-occupation for parents with adult children (Wilburn et al., 2022). This suggests that a school plan could be used more comprehensively to delineate and allocate team responsibilities. Occupational therapists’ skills in occupational analysis would be a valuable contribution to this process in providing clarity around roles and responsibilities and helping with plans that attend to the integration of DSM into daily school routines.

Factors Affecting Adolescents’ Sharing of Their Responsibility

Participants’ sense of DSM at school as a matter of life or death pervaded their decision-making and gave rise to the sharing of responsibility primarily as a means of subverting impending personal danger—which commonly equated to reduced participation at school. Some participants reported heightened anxiety related to this emphasis on risk management in diabetes care. This is important given that a systematic review reported that one-third of adolescents with T1D have elevated levels of diabetes-related distress (Hagger et al., 2016).

A review of 50 years of advancing diabetes management and related outcomes for adolescents with T1D found that treatment emphasis has shifted from avoidance of hypoglycemia to the minimization of glucose variability (Fairchild, 2015). In keeping with this shift, diabetes management strategies may be better focused on support for health-promoting habits rather than the subversion of danger. Occupational therapists’ capacity to analyze task performance and habit formation within the school context would be a valuable addition to a team-based management of diabetes that aims to enable appropriate risk management while optimizing school participation.

The way adolescents participated in the sharing of responsibility appeared to be further underpinned by their pressing need to build independence, which participants understood to mean managing diabetes by themselves. This likely reflects a normative and culturally tied expectation that as an adolescent becomes older, they will increasingly differentiate themselves from their family unit (Casey & Caudle, 2013). A qualitative study of 61 17-year-olds found that adolescents had a sense of running out of time to become proficient at DSM and that this feeling was overwhelming at times (Ladd et al., 2022). In high- and middle-income countries, changing societal dynamics mean that half of all young adults will still live at home until at least age 24, so for many this sense of urgency may be misplaced (Australian Institute of Family Studies, 2023; U.S. Census Bureau, 2023).

Participants reported reducing their communication about DSM was a necessary mark of becoming independent. This reduction in communication as they grew older has also been reported to be a function of shifting familial responsibilities (Tuohy et al., 2023). However, this may not be optimal given that many older adolescents are not meeting their blood glucose targets, which are associated with better health outcomes (Gregory et al., 2022). In addition, older adolescents have been reported to have uniquely elevated mental health symptoms compared with younger adolescents, suggesting an ongoing need for emotional support (Fried et al., 2018). Better DSM is reported when responsibility is shared across the course of adolescence and into emerging adulthood and thus represents an important consideration for school planning (Kelly et al., 2019).

In this study, the participants’ reports of increased independence meant they were less likely to access school services, and they often left school to manage their diabetes at home, thereby affecting their school engagement. A review of factors that influence DSM for late adolescents and emerging adults concurred that instead of focusing on independence, it may be beneficial to support young people to actively regulate the involvement of others (Wiebe et al., 2018). This is consistent with a literature review of shifting responsibilities in families of adolescents who have one or more chronic conditions (e.g., asthma, cystic fibrosis, epilepsy) that concluded there is limited evidence to support independence, or complete responsibility, for self-management as reasonable goals for this population (Nightingale et al., 2019). A qualitative study of 32 parent–adolescent dyads affirmed that aiming for interdependence may better support long-term outcomes for adolescents who are self-managing their diabetes (Farthing et al., 2022). These concerns are echoed by the broader health literature that questions a focus on independence as an end goal for health care, wherein it is understood to mean completing a task on one’s own, because this may function to diminish both autonomy and opportunities for social support (McClure & Leah, 2021).

The results of this research highlight the value these adolescents placed on parental sharing of responsibility. This reinforces the importance of retaining the involvement of parents and adolescents on teams that manage diabetes care for schools and prompts consideration of interdependence as the aim of successful adolescent DSM. The American Occupational Therapy Association (AOTA; 2020) endorses this view of co-occupation as a conceivable endpoint for intervention.

Finally, adolescents’ reports of limiting their sharing of responsibility to staff who were “worth the energy” provided insights into their pragmatic approach to DSM. They valued school staff who had knowledge of diabetes, offered a sense of relatedness, and supported their choices in management. Adolescents’ tendency to keep diabetes management private if they did not perceive a reason to share details reflects developmentally typical growth in autonomy (Datye et al., 2019). This is consistent with the understanding that warm, autonomy-supportive communication best supports adolescents’ sharing of responsibility for DSM (Tuohy et al., 2023). Teachers’ lack of diabetes-related knowledge and communication has been reported to reduce both adolescents’ willingness to share responsibility and teachers’ potential to minimize educational disruption (Almeida et al., 2020). Hence, teachers’ involvement in the development of diabetes management strategies is important.

Impact of Current Processes on School Participation

Participants’ current DSM practices often resulted in reduced school attendance and involvement. They rarely referred to DSM in the context of enabling optimal performance for school activities but instead focused on managing school-based risks. This meant they frequently reported leaving the classroom and/or going home when difficulties with DSM arose. These results are consistent with reports that adolescents with T1D experience restrictions on school engagement (Fried et al., 2018) and miss more school time than their peers (French et al., 2022). Other studies have similarly reported hypoglycemia as often managed by leaving class, a strategy proposed to be inherently unsafe because of the associated incidence of cognitive impairment (Kise et al., 2017).

In general, the arrangement of school-based responsibilities in this study did not reflect current recommendations for a collaborative team-based approach to the negotiation of diabetes care strategies (Lawrence et al., 2022). All stakeholders must be present if school planning is to enable the kind of responsibility-sharing that can support the integration of DSM into daily routines such that adolescents are not unnecessarily excluded from school activities.