T1D is recognised as a disability in the Australian Disability Standards for Education 2005,⁴ which is based on the Disability Discrimination Act 1992.⁵ According to these standards, schools have legal obligations to make reasonable adjustments for students with T1D to enable their participation in the curriculum on the same basis as their peers. Typically, institutions are reactive in responding to the needs of students, who are expected to fit into existing systems rather than the education provider fulfilling their obligation to be accessible.⁶ The onus often rests on parents to understand the system and advocate for reasonable adjustments for their child. Parents, as legal guardians, have the right to confidently hand over diabetes care to appropriately qualified staff during the school day and be assured that their child is safe.

Reasonable adjustments for EPS students with T1D is challenging due to the need for insulin administration. Insulin is a prescription-only medication in Australia, with limited legal rights for possession (only medical practitioners and AHPRA endorsed registered nurses with additional qualifications and specific expertise or nurse practitioners).^7-10 However, a parent or agent of the parent—for example, non-nursing school staff—may also be legally authorised when nurses are not available at school.^11-14 Parents are the only people who can grant agency (after informed consent) to a school staff member who has (a) freely volunteered, (b) completed appropriate training and (c) been deemed competent by the parent. This applies to both the administration and supervision of insulin therapy. The limited availability of school nurses in Australia, and therefore the need for an agent, creates problems, as school staff must freely volunteer. In most countries, there is no legal duty for non-medical personnel to administer or supervise medication.^{15, 16}

Although there are several international studies of T1D in the school setting, there are few published Australian studies. Research focusing on the particular needs of EPS students is lacking. The aim of this study was, therefore, to explore the experiences of parents, school teachers and DEs who support IIT use in the EPS setting to identify the facilitators and implications of this support. This study was conducted to fulfill the requirements of a doctoral thesis. Detailed findings from each individual participant group have been published elsewhere.^17-19 This paper will discuss the integrated findings from all three participant groups and the recommendations for DEs.

Method

A qualitative research design using narrative inquiry was used for this study. Explanatory stories collected from interview data, provide knowledge of particular situations in an attempt to understand individual personal experiences.²⁰ Examining how and why a particular outcome occurred by collecting descriptions of past events and actions, enables planning for future action and informs practice.²¹ Unlike quantitative data, qualitative interview data provide rich descriptions of personal experiences.

The inclusion criteria for participation in this research were a parent, school teacher or DE caring for a child with T1D who was, at the time of the study 1) attending the first 3 years of an Australian primary school, 2) using IIT (insulin pump or multiple daily injections) and 3) receiving an insulin bolus or injection at school. Participants were also required to be able to speak English. Participants were recruited through Facebook support groups, the Australian Diabetes Educators Association e-newsletter and emails sent to school principals. Recruitment occurred between December 2014 and September 2016.

All participants were emailed an information sheet and consent form prior to data collection. This information and the option to withdraw from the study at any time was also verbally explained over the phone before commencing the interview. After gaining informed consent, demographic and interview data were collected via phone at a mutually convenient time. Open-ended questions and a semi-structured interview guide were used to stimulate discussion about participants’ experiences of facilitating IIT use in the EPS setting. The interview guide was developed after a review of the literature and consisted of broad questions to address the study’s aims. Additional questions and probes from the interviewer were based on individual participant responses. Interviews were conducted by the primary researcher, a Credentialled Diabetes Educator (CDE) experienced in school diabetes care. Data were collected between December 2014 and September 2016. The interviews lasted an average of 40 minutes and were digitally recorded and transcribed verbatim by a professional transcription service. The transcriptions were checked for accuracy by the primary researcher.

The Human Research Ethics Committee at Western Sydney University granted approval to conduct the study (Approval No. H10811). In addition, ethics approvals to recruit school teachers were provided by the relevant departments of education.

Data analysis

Narrative analysis was used to interpret the interview data (Table 1). Narrative analysis, as informed by narrative cognition, involves noting difference and diversity within interactional and temporal contexts to provide an understanding of human action.^{20, 22} This method produces explanatory stories from descriptions of events and actions (narrative elements).²⁰ Narrative cognition results in ‘good stories’ that are detailed, sequential and oriented towards action; they deal with the particulars of experience in time and place.²²

Table 1: Narrative data analysis process

Findings

Thirty-eight people participated in the study: 13 DEs, 11 school teachers and 14 parents (Table 2). No participants withdrew from the study after data collection and there were no adverse events to report. A summary of findings from all participant groups with the major implications is provided in Table 3. All three participant groups identified collaborative partnerships, diabetes education, teacher aides, insulin pump therapy and continuous glucose monitoring as factors that facilitated support for IIT in the EPS setting. The implications of non-nursing school staff acting as voluntary agents to administer or supervise insulin included the need for development of simplified diabetes care plans and an additional burden on school teachers, including the potential legal considerations of performing tasks outside their usual scope of practice. Mothers were expected to fill the gap in available health support in both the hospital and education systems, with significant physical, emotional and financial implications. A combined examination of all participant data was conducted, and five key narratives were evident (Table 4).

Table 2: Participant characteristics

* First year of compulsory school attendance for children aged 5 years by April–June, depending on the Australian state/territory.

Table 3: Summary of study findings

Table 4: Combined narrative findings

Discussion

1. The disconnect between mandatory school attendance, the Disability Standards for Education 2005 and insulin administration

The current study highlights that, when a child with T1D enters the Australian school system, a consistent, formal support structure is lacking. Care is negotiated on a case-by-case basis and is dependent on the availability of a staff member to volunteer to administer or supervise insulin therapy. There is an obvious disconnect between mandatory school attendance, accessing education on the same basis as others according to the Disability Standards for Education 2005,⁴ and the availability of school nurses to legally administer insulin. Many education providers lack the necessary resources to implement reasonable adjustments for students with disabilities.⁶

2. Non-nurses administering or supervising insulin

All participant groups in the study—DEs, school teachers and mothers—reported that most children received voluntary support for IIT from school staff. However, there was no guarantee of ongoing and predictable support throughout the child’s entire schooling, which created uncertainty and distress for mothers. A class teacher or aide administered insulin for eight of the 25 students, and supervision was provided for 14 children who self-administered. This role was often associated with an increased burden of responsibility. The potential legal implications and emotional and physical burden triggered feelings of anxiety and distress for teachers. The medical aspects of diabetes care were reported as overwhelming at times and administering insulin in the classroom placed added pressure on the teacher if support from an aide was not available. Consequently, their attention was diverted away from their core teaching responsibilities and other students. It is unreasonable to expect class teachers to be responsible for IIT in addition to providing a duty of care for the remaining students in the classroom. Teacher burden has been highlighted in other studies, which reported that children with diabetes required more time and attention than students without diabetes did.^{23, 24}

Mothers in the current study spoke about the benefit of teacher aides. They were an ‘extra set of hands’ to take the pressure off class teachers and provided consistency for diabetes care. Unfortunately, the long-term funding and allocation of a teacher aide was not guaranteed for children in this study, and the aide was often shared among many students with varied, complex support needs. When aide support for diabetes care was not available, workload and stress levels increased for both the class teacher and mothers. Furthermore, the availability of teacher aide support for students with T1D varied across Australian states and school types according to both this research and an earlier study.²⁵

3. The implications of non-nurses administering or supervising insulin

To enable diabetes care to be provided at school, DEs considered the added burden on teachers, with large class numbers and other students with additional health needs and consequently simplified diabetes healthcare plans, trained non-nursing staff to administer or supervise insulin and the overall responsibility was transferred onto parents. Typical messages to mothers included, ‘Keep diabetes care simple at school. Don’t expect too much from staff. The main responsibility is on you as the parent’. Rather than advocating for appropriately qualified nurses to provide essential diabetes care at school, DEs simply ‘made do’ with existing resources in the hope that someone would volunteer. Parents were expected to provide consent for non-nurses to administer or supervise insulin for their child at school.

An additional implication of non-nursing staff administering or supervising insulin was the undue pressure on mothers to constantly be available to make clinical decisions. Mothers in the current study were proactive, well educated, able to speak fluent English and confident with diabetes care. Although they were highly capable, they still felt overwhelmed by the continuous amount of work and responsibility of caring for their child’s diabetes at school. Mothers sacrificed employment and/or family commitments to attend special school events and high-risk sports days due to concerns about the potential for hypoglycaemia and the lack of individual and skilled supervision from school staff. Likewise, parents in other studies exploring T1D at school experienced disruptions to their employment due to the inadequacy of school support.^26-29 Studies exploring school diabetes care in Spain¹⁶ and Denmark³⁰ also found that parents were always on alert, in a chronic vigilant state, which caused feelings of panic, worry, fear and anxiety. The inability to hand over care confidently during the school day and the requirement to always be on call have significant emotional and physical impacts for mothers. The added burden of diabetes care on mothers during the EPS years, when children require the most support, resulted in social and economic disadvantage as they put their lives on hold until their child was more independent. Cummins et al. ³¹ found that Australian parents caring for children with a disability had lower levels of life satisfaction, socioeconomic status and labour force participation.

School teachers in the current study also discussed the amount of work placed on mothers, particularly when a DE was not available to attend the school for initial and ongoing support with IIT. DEs confirmed the ‘big gap in services’ for diabetes support at school and the additional burden on parents who were expected to ‘fill the gap’. The lack of ongoing assistance from a DE was particularly problematic when parents were experiencing grief from their child’s diabetes diagnosis; had limited English, literacy or confidence speaking with school teachers; or had employment commitments.³² Likewise, a study by Marshall et al.³³ reported the need for continued parental support to facilitate diabetes care. School teachers in the current study volunteered to support diabetes care because the parent was contactable, organised and understanding.

4. The benefit of a school nurse

Three mothers in the current study reported the lack of a volunteer from the school to assist with IIT. The school advised mothers that they would need to administer insulin or that their child would need to self-administer. The inconsistent approach across school types and Australian states caused significant distress for mothers. A parent should not be expected to attend to their child’s diabetes care at school when resources are inadequate.¹² While support for IIT from a class teacher or aide had worked relatively well for many students in this study, it was on a voluntary basis. Most teachers and aides do not have formal health qualifications; they are not legally obligated to provide diabetes care and often have other roles within the school environment.

The benefits of a school nurse are that they are employed specifically for the purpose of health care, they have appropriate qualifications, it is within their professional scope of practice, and they have legal coverage for the administration of insulin as a Schedule 4, prescription-only medication. Moreover, access to a school nurse enhances safety for students with diabetes and reduces both the physical and psychological burden on parents and children.^{16, 34}  In addition, improvements in quality of life, classroom participation and diabetes control have been reported.³⁵ Other research has revealed the increased productivity of class teachers and parents in addition to reduced healthcare costs when a full-time school nurse was employed.³⁶ School nurses would benefit not only students with T1D but also their parents, teachers and all students with or without chronic health conditions.

There are 9,769 schools in Australia³⁷ and approximately 1,500 school nurses,³⁸ clearly indicating a shortage in services. The role of the school nurse is diverse, often requiring autonomous practice and significant expertise in many areas: primary health care; early detection and timely intervention in health or developmental issues; health promotion and prevention; health education; and chronic condition management.³⁹ According to the Australian National School Nursing Standards for Practice, the role of school nurses includes formulating care plans and providing health care.³⁹ However, in most schools, nurses are not readily available to assist with the direct management of health conditions, including T1D. In relation to the present study, school nurses appear to have been substituted with school teachers, teacher aides and administration staff. These staff members provided, to children with diabetes, care tasks that are normally within a nursing scope of practice.

The absence of school nurses, the poor ratios of school nurses to students and the substitution of nurses by untrained staff indicated in this research highlights the lack of appreciation of the complexity of the school nursing role. Teachers, aides and administration staff were expected to just absorb the school nurse’s role as though anyone could provide ‘care’ regardless of their qualification or lack thereof.

5. The important role of diabetes educators

The foundation for IIT support for this young age group is diabetes education and training, which provides knowledge and skills to enable understanding and increased confidence. A report from Diabetes Australia⁴⁰ identified that teachers were often concerned about their limited diabetes knowledge, which reduced their confidence when supporting students. A previous Australian study found that parents felt the school did not understand the seriousness of T1D, which affected the school staff’s level of assistance with diabetes care.³²

Teachers in this study reported receiving diabetes education via internet sources, DEs and parents. Some teachers experienced a lack of or delay in gaining health support from a DE. Mothers received support from either a DE from the hospital, a community/regional nurse or a nurse from the Queensland Education Department (the only state that mentioned school nurses employed by an education department). The nurses developed a diabetes healthcare plan and advocated for school support of IIT. Teachers expressed that there was an added burden on parents when there was a delay or lack of support from a DE. Six parents reiterated school teachers’ experiences of under-resourced diabetes services. These parents were expected to provide diabetes education to school staff, as DEs at the hospital either considered them capable, or were aware of the need for DE support but unable to meet the demand.

Other school teachers found DEs to be very supportive but wanted ongoing assistance, as they were not skilled in diabetes care after just one session. However, ongoing support was often provided by parents rather than a DE. Similarly, mothers in this study discussed the value of nursing support when their child was newly diagnosed, nurses knew what the school could do and provided peace of mind for mothers and school staff. Nurses, as qualified health professionals, provided credibility to requests for the accommodation of IIT rather than when these requests were from ‘just a panicked mother’.

In the past, it was common for DEs to provide support on school grounds. Providing face-to-face support in the child’s usual environment was a rewarding experience for many DEs in this study. Unfortunately, the increased number of children with T1D and the lack of associated additional staffing has led to withdrawal of school-based support from many diabetes services across Australia. Alternatively, DEs in this study discussed other options such as education seminars through Diabetes Australia, school nurses (Queensland Department of Education nurses), DEs in private practice, or parents.

DEs in the study who continued to provide support on school grounds tended to be from inner regional areas and non-paediatric specialist hospitals. These services had smaller numbers of children, short travel distance, support from their managers, and the educators believed that visiting schools was worthwhile. However, many DEs sacrificed their personal time and rescheduled non-urgent outpatients to accommodate the additional workload.

Although teachers in this study volunteered to either administer or supervise IIT, they expressed feelings of stress, anxiety and a burden of responsibility that could potentially be avoided with formalised skills training and ongoing assistance from DEs. Diabetes education provides theoretical knowledge and an understanding of concepts for problem-solving. However, skill development for IIT support requires training and real-life practice to develop and maintain competence. Research from Boden et al.⁴¹ highlighted the benefit of formal diabetes training: it validates the role of the teacher as a qualified carer, increases knowledge and confidence and limits panic. Teachers spoke about the significant gap between gaining diabetes knowledge and actually applying it in practice, stating that the most useful type of training was in relation to tackling specific issues in the classroom.

The Australian Paediatric Society¹¹ recommends three levels of diabetes education and training for school staff: (1) introductory education for all school staff, (2) intermediate education for school staff responsible for the child with T1D and (3) individualised skills training for staff supervising or administering insulin. The Diabetes in Schools report has recommended that each Australian state and territory diabetes organisation should provide or enable standardised diabetes training for nominated school teachers and other staff before the child commences, or as soon as possible, with follow-up training if required.⁴⁰ This is essential to ensure that teachers feel adequately prepared, children are safe and that parents have confidence in the school. Yet, the increased incidence of T1D has added to the workload of Australian DEs, who therefore become unable to provide this level of school support in all areas, particularly for Level 3 skills training.

In November 2019, the Australian Minister for Health announced $6 million in government funding for the Type 1 Diabetes Management in Schools program, commencing in 2020.⁴² This program aims to support students with T1D through online training and education, available for all school staff (Levels 1 and 2), and individualised face-to-face skills training (Level 3), for selected schools where students have high needs. The benefit of the new program is the availability of nationally consistent support and three levels of training.⁴³ Level 3 face-to-face training on school grounds is individualised for a particular student and, where possible, will be provided by a health professional from the student’s usual diabetes team.

The Type 1 Diabetes Management in Schools program aligns with Action 2.2 of the Australian National Diabetes Strategy Implementation Plan.⁴⁴ However, the government is yet to fully address strategies for Goal 3 of the Strategy,⁴⁵ particularly (1) improving workforce capacity and (2) making preschool, school and child care diabetes-safe environments. Rather than only allocating Level 3 diabetes training for selected schools and for students with high needs, additional funding is required to increase the number of DEs in public and private practice so that all school staff, parents and students can receive the necessary level of specialised support for IIT.

When non-nurses in the school setting agree to act as agents to administer or supervise IIT under a healthcare plan provided by either a nurse employed as a diabetes educator or a school nurse, this practice is considered a delegation of care. The Nursing and Midwifery Board of Australia⁴⁶ state that ‘registered nurses are responsible and accountable when delegating activities in a nursing plan of care in any practice setting to another person’ (p. 9).

When DEs or school nurses delegate care to non-nurses in the EPS setting, they are responsible and accountable for that decision. When delegating to a health worker or any other unregistered person, the registered nurse needs to consider, among other factors, if there is consent, competence, and supervision.

(a)         Consent: The person receiving care must consent to the activity being performed by an unregistered person. Parents in the study may have felt pressured to accept care from non-nurses. Therefore, the validity of the consent may be questionable. This highlights the need to formalise the consent process for delegated diabetes care to ensure that parents fully understand what they are agreeing to and their right to explore alternative options.

(b)         Competence: The unregistered person must be competent, possessing the necessary education, experience and skill to perform the activity safely. The registered nurse may deem that, after diabetes education, training and further support, non-nursing staff possess the experience and skill to perform diabetes care safely. However, these school staff typically do not have a level of health education and skill equal to that of a registered nurse. Furthermore, the registered nurse is responsible for determining whether the delegation is appropriate and within the person’s scope of practice.⁴⁷ The delegation of insulin administration or supervision (a Schedule 4 medication) is clearly beyond the scope of practice of unregulated and/or unqualified/inadequately qualified school staff and, therefore, the delegation would be considered inappropriate.

(c) Supervision: A registered nurse should be available to provide the required level of supervision and support. Due to the shortage of DEs and school nurses, it is unlikely that a registered nurse would be readily available to provide direct supervision and support for non-nursing school staff administering or supervising IIT.

DEs and school nurses involved in healthcare planning and in education and training of non-nurses to supervise or administer insulin in the school setting need to be aware that this practice is considered delegation. The voluntary arrangement to administer or supervise insulin could be viewed as a private agreement between parents and school staff. However, once a nurse becomes involved in the process, it clearly falls within the practice of delegation, with potentially serious professional and legal consequences.

Strengths and limitations

This study is the first to provide a rich, qualitative insight into the collective experiences of three key stakeholders involved in supporting children with T1D using IIT in the EPS setting. This sets the study apart from most other studies of the topic, wherein the findings typically represent the voice of only one or two stakeholders or involve only small participant numbers. Additionally, participants were recruited from three different settings: health, education and the community. The use of telephone interviews enabled data to be collected from across the vast Australian continent: seven out of eight Australian states and territories and incorporating both regional and city geographical areas. A broad overview of the facilitators of IIT use in this young age group has been provided, as the study included DEs from both private and public clinical practice, and both paediatric and combined paediatric/adult diabetes services. In addition, school teachers from government and non-government schools contributed, and participants discussed their experiences with students from kindergarten/reception/preparatory, Grade 1 or Grade 2, and with insulin injections or pump therapy.

With the limited breadth of the sample and methods used, the findings may not capture all narratives of DEs, school teachers and mothers as related to IIT support in EPS. There was a lack of input from remote areas of Australia, the Northern Territory and men (fathers, male DEs and school teachers). Study participants were purposively recruited and, although this was appropriate for narrative methodology, the findings might be influenced by participants who were more proactive than others. Participants were also from English-speaking backgrounds; therefore, the findings do not represent the experiences of people with culturally diverse backgrounds.

Recommendations for policy and practice

For students with chronic health conditions to safely access education on the same basis as their peers, the development of a national Australian policy that aligns with the Disability Standards for Education is required. School students, regardless of where they live or the type of school they attend, should automatically receive the same level of support for their chronic health condition. National policy needs to stipulate that appropriately qualified nurses are essential for the provision of high-quality care for students with chronic health conditions, including T1D.

Nurses working as DEs need to be aware that providing healthcare plans, education and training to non-nursing school staff who administer or supervise insulin is considered a delegation of care with associated accountability. DEs should not expect parents to give consent for non-nurses to provide diabetes care for their child in the school setting. DEs need to advocate for appropriately qualified nursing staff in schools so that children with diabetes receive the high-quality health support they deserve. School teachers should not volunteer to administer or supervise insulin therapy, as this task is clearly beyond their professional scope of practice and places not only themselves, but also their students, at risk.