Promoting Self-Care at School for Students With Chronic Health Needs

Participants

A purposive sampling strategy was used to recruit elementary teachers of schoolchildren with diabetes receiving care through the School Health Support Services (SHSS), a medical program designed to enable students with CHNs to participate at school (New Brunswick Department of Education, 1999; Ontario Ministry of Education, 1984). The teachers were selected from a Public School District in a midsized city in New Brunswick (N = 4) and two Boards of Education in a midsized Ontario city (N = 4), namely, a nondenominational School Board (N = 2) and a Separate (English Catholic) School Board (N = 2). The recruitment of participants took place in two phases, starting with the New Brunswick School District (October 2013) and followed by the Ontario School Boards (January to March 2014). Participants were contacted through Board-approved mailing lists, as well as through word of mouth from teacher colleagues. Prior to the one-on-one interview, the demographic questionnaire was electronically distributed. The questionnaire asked participants to describe their employment status, teaching history, professional qualifications, and training in diabetes management. Questionnaire data are summarized in Table 1.

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Table 1.

Characteristics of Study Participants.

Characteristics	n
Interview participants (N = 8)
New Brunswick	4
Ontario	4
Grade level(s) taught a
Kindergarten	2
Grade 1	2
Grade 2	3
Grade 4	1
Grade 5	3
Grade 6	1
Years taught (years)
Median	7
Range	5-14
Highest level of qualifications
Master’s	2
Bachelor’s	6
Children’s diagnosed health condition
Type 1 diabetes	9
Type 2 diabetes	1
Sex ratio of children
Female:male	5:5

a

Numbers include split-grade classrooms.

Interview Data Collection

Semistructured, open-ended interviews were facilitated by the primary investigator and occurred at teachers’ schools. Interviews ranged in length between 60 and 120 minutes. Interview questions focused on teachers’ conceptions of CHNs and self-care. Additionally, teachers were asked to share narratives of educating students with diabetes and their efforts to promote self-care. Teachers were asked to discuss the resources, supports, and stakeholders that enabled them to support the health needs of students with CHNs. Questions and probes were designed to allow an opportunity for the teachers to revisit their experiences and discuss how they perceived a number of aspects of students’ self-care. Our objective in the interviews was to capture the “layers or levels of sense” (Costello, 2012, p. 5) teachers held as perceptions of their experience in addressing their students’ health support needs, with follow-up questions used to elicit deeper descriptions of how teachers made sense of their participation in supporting students’ experiences of developing self-care. All interviews were audiotaped and transcribed verbatim for analysis. Field notes documenting the layout of the classroom, school environment, and any health documentation that was shared to further inform about health needs of the schoolchildren with DM provided additional contextual information.

Data Analysis

Transcribed interviews and field notes were imported into NVivo 10 for data management and analysis. For the New Brunswick and Ontario data sets, each were earmarked according to participant number and provincial abbreviation (e.g., 01NB, 03ON). Data analysis included inductive coding of all data within the two provincial sites, followed by the generation of larger themes (Moustakas, 1994). Two investigators representing the disciplines of educational psychology and curriculum studies, respectively, read the transcripts and met to inductively develop a coding scheme. After an initial code list was generated (N = 16), data were coded by the two raters, independently. A high rater reliability was observed (.92; see Miles & Huberman, 1994, for procedure). In cases where data were coded differently, raters discussed code assignment until consensus was reached (Hays & Singh, 2012). Based on co-occurrence of codes and code relationships, five themes emerged that responded to the identified research questions: (a) teachers’ conceptions of self-care, (b) learning about health supports, (c) communication for self-care, (d) building inclusion, and (e) a difficult but manageable endeavor.

Teachers Conceptions of Self-care

Self-care was initially an unfamiliar term to the interviewees; accordingly, the teachers constructed meanings throughout interviews, associating self-care with the child’s observed behavior in relation to their everyday caregiving experiences. They attributed to the word the general approach one takes to manage his or her health, the clinical ideas informing personally relevant caregiving practices, and the skills that are acquired to cope with the social, emotional, and physical challenges accompanying life with diabetes. These attributions to self-care resonated with much of the clinical literature (e.g., Halvorson et al., 2005; Orem, 2001).

The meanings generated for self-care also encompassed teachers’ commentary about the relevance and timeliness of self-care for individuals with CHNs. Tim expressed, “Self-care, to me, I guess, is living with it day-to-day and in a way that does not jeopardize your health any worse than it already is” (03ON). Furthermore, several teachers expressed that self-care only becomes a pressing need after diagnosis. Rachelle, for example, said, “It brings on a whole new life. . . . It compromises you, you know, the body can’t manage on its own any longer” (03NB). As a result, “Care must be placed on the body, but not any type of care, but for diabetes, having the self-care” (03NB). Paul likewise perceived self-care as being associated with life postdiagnosis. “Becoming a self-advocate is very much like what diabetes impresses upon the self: the need to seek out specific actions, because the body doesn’t work on its own any longer” (020N).

In conceiving self-care as deliberative action exercised in the aftermath of diagnosis, Paul, like the other interviewed teachers, further described the nature of self-care by appealing to his student’s perceived psychological characteristics. “When I think of self-care, I think of Jared developing his own medical expertise—becoming a self-advocate, like, showing competency and autonomy in taking care of his well-being” (020N). Similar to Paul, Casandra believed that once her student was hospitalized midway through the school year and became diagnosed, as part of his newfound treatment regimen Darryl “needed to develop courage and persistence,” because only with these could he “demonstrate the self-care needed to stick to the chronic health routines, day-in, day-out” (04NB).

Self-care was further conceived as an embodied skill set developed through supportive relationships with others and through the formalized operations of diabetes management. According to Casandra, self-care meant “getting into health from the knowledge and the support around you” (04NB). In the context of the SHSS, most teachers described self-care as interconnected with diabetes management, yet also the desired outcome of all the teachings that may come through the course of diabetes management. In the words of Greg,

Self-care . . . refers to that release of responsibility from the circle of practitioners to the child. It is about releasing the teachers, educational assistants, and other school personnel from the context of taking care to do certain tasks and putting these same tasks on the child to do herself, so that she can integrate better with others and work with the schedule each day. (01ON)

Susan also linked self-care to her student’s perceived ability to perform most, if not all, of the medical tasks independently. “His ability to self-regulate allowed us to coexist together. I could support and encourage him, but he didn’t need me to take a hands-on approach with him or hold his hand and to take care of the situation” (03NB).

Apart from understanding self-care as the outgrowth of caregiving supports at school, the majority of teachers described self-care as a very practical endeavor marked with incremental accomplishments. As Rachelle indicated,

Self-care is a goal-oriented project. It involves steps to do; you’re reaching developmental milestones. On the work, you’re getting into it; learning lots of things. You’re concerned with gaining the skills—learning of numbers; interpreting results; all the administering; and doing decisions on your own. (03NB)

Everyday examples of practical gains for self-care might be, according to Kathleen, “packing a healthy lunch . . . being healthy, being active, and eating the right things, and putting the right fuel into the body at the right time” (01NB). In taking an active approach to one’s own care through these and similar other habit-forming activities, Lacy hypothesized that the student with diabetes “gets to peak performance,” that is, “having just your body being in a good spot and your mind in a good head space. Not feeling yucky or not feeling off-kilter—ready to go for learning” (04ON).

The teachers’ conceptualizations of self-care featured three main components: (a) an acquired sentimentality supportive to the development of personal health and wellbeing while living with chronic disability, (b) a set of tangible skills useful for facilitating the everyday treatment regimen of diabetes management, and (c) the experience of reaching developmentally appropriate milestones consistent with school readiness behaviors. These conceptualizations serve to contextualize the perceived teaching of students with diabetes in ways that appear to support the findings of Mukherjee et al. (2000). Nevertheless, these teachers’ descriptions of self-care add critical insight from the space of classroom life to the existing knowledge base of teaching self-care to children and youth with diabetes (Kirchofer et al., 2007).

Learning About Health Supports

Learning about the various health supports available for addressing diabetes (i.e., the chronic illness) was found to undergird at least three aspects of the development of self-care education: (a) constructing as thorough knowledge about the child and of his or her health needs for self-care as possible, (b) learning from the students’ experiences of diabetic distress, and (c) mobilizing the documentation of health supports in the school environment.

Knowledge for enacting the medical services program, according to the teachers, developed through relationships with members of the child’s family and school nurses. These relationships were substantiated through written documentation, including health records, emergency response protocols, and caregiver summaries. For example, Rachelle described her interactions with the parents of children with DM and the school nurse in the following way:

The diabetic nurse gave us some information on glucose testing and insulin injections and gave us a chance to practice the steps, including recording the sugars and insulin amounts. The parent, each time, based on the information from the pediatrician, gave us the rest, including the child’s ranges for blood sugars—what they looked like, and what foods have the power to jump the sugars quickly, what to do when the sugars are very low and high. (03NB)

While the teachers professed the importance of gaining an understanding of the students’ needs for self-care, they also indicated that studying their students’ body language offered them the chance to acquire symptomatic knowledge about diabetes. For example, Greg indicated that having had exposure to episodes of diabetic distress was educative for him: “I have read and responded to the situations I’ve encountered, and as a result I have built up my experiences in a meaningful way. The more situations that you see, the easier the next ones become” (01ON).

Teachers alluded to perceived differences in the quality of the knowledge about diabetes acquired through interpersonal contact, compared with information in written reports. Tim commented on his experience teaching gym classes:

I didn’t know what was going on. Jenny kept coming to the bench, being all covered in sweat, head drooped slightly, and even sometimes gasping for some air. It didn’t take long before Jenny was just bottoming out. . . . I never thought to ask the parents about how to catch these lows at the beginning of the school year after going through all the paperwork. (03ON)

However, the teachers asserted that written information is essential in facilitating the coordination of care among service providers within the school environment. For instance, Kathleen remarked,

The pictures and the blurb provide everyone at the school with information about the child, emergency procedures, signs and symptoms, caregiver responsibilities, and parent and physician contacts. . . .These are key to raising and maintaining awareness about which children in the school have health needs that require our care. (01NB)

Such written information is perceived to benefit the school’s capacity to educate its teachers on how to execute emergency response procedures. “All of us knew what protocol and what steps were needed to take care of him. We just never had to act out on them” (02NB). Furthermore, knowledge about the student’s health support needs can be found in special education documentation. As Paul pointed out, “The Individual Education Plan pretty much indicates he has type 1 diabetes. It indicates some of the symptoms; some of the things to look out for; some of his health history” (02ON).

Despite the availability of medical services resources at school, educators felt challenged to make sense of these resources. As Rachelle suggested,

We have the form that parents fill out the information that talks about the symptoms and treatments. It’s a booklet that you can download. … However, I would highly recommend the diabetic nurse or the diabetic clinic to visit schools. . . . Having a direct contact with an individual in that field so that if you did run into an issue and you needed some information, you would have someone directly connected. (03NB)

Similar to previous studies (Mukherjee et al., 2000; Shiu, 2004), learning about health supports from the perspective of educators appears to be dependent on them forming a collaborative relationship with parents and health professionals, in addition to the student whose self-care for diabetes requires having their input. Like Kelo et al. (2011), educators’ interactions with the parents and health professionals have enabled them to acquire psychological insight about the students’ mental health and associated needs for self-care. Teachers recognize that written information contributes to their administration of health supports, but knowledge constructed through interpersonal contact generates a more contextualized and layered understanding of the students’ clinical symptoms. Repeated exposure to episodes of emergency blood glucose levels results in heightened sensitivity to address accompanying physiological and functional changes in the students’ behavior.

Communication for Self-Care

The school environment is widely understood as an important arena for facilitating communication about children’s needs for self-care (Kirchofer et al., 2007), supporting them in their goals for social, academic, and personal successes (Alderfer & Rourke, 2014). However, there was little to no evidence in the literature on how communication for students’ self-care worked from the point of view of teachers. In this study, teachers identified communication as an integral feature of developing self-care in students with DM, and further described the importance of communication to support the continuum of self-care with their students, parents, and school/health personnel.

All teachers mentioned having participated in an SHSS meeting with parents, school personnel, and visiting health professionals. Some teachers expressed having had the meeting in advance of the school year, while others spoke about having had it during the first few weeks of the fall semester or at some time during the school year. Regardless of school location, the teachers reported that school administration played an important role in setting up the meeting to initiate the medical services intervention. As Greg relayed,

The principal, she got everybody together. She gave us permission to review all the medical safety procedures and background info. The principal gave me the student’s plan. It was something to read—the medical health information package that the school had made. The medical plan involved the nurses who provided the insulin shots. (01ON)

Meanwhile, the parents were described as steering the conversation about how the school might promote the realization of self-care in their daughters or sons at school. For example, Casandra said,

The parents and I went through what the student was supposed to be eating. How the parents were going to contribute to that. How the parents were going to manage preparing his lunches and sending them in. The parents provided me with the needle box—the safety one that you can put your used health materials in. The parents provided everything for me, as far as meeting the needs of the student while in school. (04NB)

Some teachers lamented how communication had become quite clinical over the course of the school year:

I’ve been in touch with his mom, sharing health information and getting feedback to go forward with the medical procedures. In the morning time, his mom would say, “ This is how many carbs he is having today.” It was rigid. (03NB)

Similar to Howe et al. (2005), some of these communications with the parents took place over the telephone. In these cases, classroom teachers coordinated the care with the family mainly to support the everyday health routines and to inspire compliance behaviors at school relative to the child’s health plan. Unlike the conclusions reported in Nordfeldt, Ängarne-Lindberg, Nordwall, and Krevers (2013), Rachelle, Casandra, and Greg explicitly indicated that their contact with the parents led to perceived tangible improvements in the process of diabetes care at school.

Apart from the communications had with the parents and school personnel, teachers operationalized the delivery of medical services in response to the students’ perceived clinical and social needs. According to Tim,

Knowing how the medical and social sides of the equation operate definitely would help to work out the solutions to health problems in a more inclusive way and as they arise in the student’s life. A way to do that is making good connections with the parents, and, if lucky, with the medical staff. But that’s hard to predict and it’s asking a lot on the teacher. However, the teacher’s never alone—that’s for sure. (03ON)

The teachers’ accounts of having communication for self-care such as these extend our understanding of the complexity enveloping the administration of medical services for students with DM at school (Halvorson et al., 2005), and highlight how communication among members of the SHSS team (i.e., teachers, school personnel, parents, health professionals, and students) appears to be an essential component in teachers’ experiencing service delivery as coordinated, productive, and educational for their students.

Building Inclusion

While schools generally deliver medical services for students with health support needs within the context of the classroom (Jackson, 2013), educators often remain limited in their interactions with these students (Mukherjee et al., 2000), assuming a pedagogical orientation that works on the premise of scripted accommodations and modifications (Thomas & Vaughan, 2004). In such context, educators might draw on provincial curricula in an effort to construct a culture of social acceptance (McDougall et al., 2004). Yet, regardless of how the relationship between pedagogical content and inclusion unfolds, students inextricably face the impact of teaching philosophy and methods of instruction as performed by their teacher. Accordingly, conceptions of disability are constructed through the knowledge of personal experiences, interests, and strengths for learning (Mukherjee et al., 2000).

Teachers’ reflections highlight much congruence with the literature; however, the teachers often described administering medical services as being bound up in the more fundamental quest to realize a form of schooling that promotes students’ health and wellness, safety, and participation. Kathleen, for instance, said, “The teacher builds her knowledge of diabetes care based on what works to support the child’s safety, comfort, and self-esteem” (01NB). She further described how teachers in her school have constructed learning for all students, thereby embedding self-care education within the domain of a general classroom lesson.

The lessons we teach are based on Stephen Covey’s work—The Seven Habits for Highly Effective Children. The first habit is being proactive. Each month we talk to the kids about sharpening the saw. . . . The students are involved and being active—taking healthy risks, saying “Yes, I can,” as opposed to “No, I’m busy,” or “That’s boring!” . . . Having diabetes is not a barrier. It should thrust them to reach for these moments. (01NB)

Teachers’ accounts frequently described using instructional language that emphasized the person first and foremost, and interpreting the students’ diabetes as an opportunity to reconceptualize disability outside of a clinical framework. Susan insisted that she “always said ‘Kevin’ not ‘Kevin with diabetes’” (02NB) and viewed these expressions as measures designed to deconstruct “barriers to full participation” (02NB). “I don’t view students with a health condition as if it were something within the body of the student. . . . It has something to do with the school environment” (02NB).

Teachers also spoke about the students having the power to inform perceptions about, and shape classroom attitudes towards, their diabetes. According to Casandra,

Darryl presented to the class what diabetes was all about. He ended up doing this phenomenal PowerPoint presentation all about his condition. Essentially what it is and what lows and highs look like. . . . We have projects here at our school we believe in. The kids become experts at something. For Darryl, this involved him becoming the expert at diabetes. The kids were amazed and respected that. They thought it was really cool. (04NB)

Although all teachers expressed the importance of building inclusion, they held contrasting views about the impact students with medical health needs had on their ability to promote self-care. The New Brunswick classroom teachers felt they held a deep obligation to be involved in their students’ self-care. “While the child is in my care, he is absolutely my responsibility,” which, according to Rachelle, meant making sure that “Lydia gets all her stuff prepped. . . . She then turns it [glucose monitor] towards me and she counts down. I write down the reading once the monitor shows it. And then she cleans up afterwards” (03NB). As a result, the teachers from the Atlantic province openly viewed themselves as occupying a central role in the delivery of health services for these students.

For the Ontario teachers, the medical procedures were understood as a necessary inconvenience taking place within the classroom or school. “He kept his care bag by his desk all the time . . . It contained disposed items and it was completely gross–definitely not clean” (02ON). Furthermore, some students were described as having to take periodic leaves from the classroom to perform their medical procedures, either under the supervision of an attending nurse or along with an educational assistant.

The nurse takes Jenny to the Life Skills and Development Centre. Sugars are checked three times a day, and the nurse helps administer Jenny’s insulin during lunchtime. . . . I don’t stop teaching when Jenny leaves and I don’t double-back on things either when she comes back. . . . In all, she misses at least 10 minutes of instruction per day. This all adds up to much hours of lost learning time. (03ON)

Accordingly, Ontario teachers stated that they oversaw much of the health services, but performed very little in the way of administering medical procedures as a measure to show compliance with school policy. However, some circumstances were seen as warranting necessary teacher intervention. As Lacy pointed out,

The office is like, “You should not be testing.” “You’re not supposed to be testing!” But when Lawson says he is hungry and no one else is available to intervene, well, I guess I’m the only one here. So, I test him and he is 2. If I wait 5 minutes, because Craig [Educational Assistant] is helping Tim upstairs, what could happen? I don’t even know how fast he would drop! I need to be proactive and take the risk. (04ON)

Like Mukherjee et al. (2000), the teachers’ accounts of their experience in administering health services featured a strong concern for building inclusion. Students’ health and safety, participation, and self-esteem were described as key objectives in the teachers’ care, and examples of how classroom instruction might accomplish these populated teachers’ discussion as well. However, the level of involvement teachers’ reported in the students’ everyday medical care differed by province, with New Brunswick teachers claiming to assume a central role while Ontario teachers mainly occupying a peripheral role.

A Difficult but Manageable Endeavor

Teachers expressed supporting their students’ self-care through a series of progressive steps (Alderfer & Rourke, 2014), starting at the SSHS meeting and following with health-infused teaching strategies (Daneman, Frank, & Perlman, 1999). Consistent with previous research (e.g., Nabors et al., 2008), most teachers had little to no previous knowledge about the health needs for diabetes self-care prior to the child’s entry into their classroom (and reentry in two cases). Hence, teaching students with DM was considered a “difficult but manageable endeavor.” Teachers felt underprepared at that time to meet the child’s perceived health needs. Susan summed up: “Well it was definitely a trial by fire . . . I was instantly terrified that I was going to have a child solely dependent on me” (02NB). Furthermore, the teachers felt having some practical, hands-on medical service training might be useful in preparing them for their SSHS paramedical role. Paul, for example, said, “I realize there are things that may arise unexpectedly, but making sure that, if you are in this pickle, what should you do? I think all of that needs to be practiced well before the sun shines” (02ON).

After the SHSS meeting, Susan, Paul, Casandra, and Tim reported using the child’s goals for self-care to inform their interpretation of teacher-directed health supports (Kucera & Sullivan, 2011), while Kathleen, Rachelle, and Lacy, largely because of the child being unwilling or unable to present, said they employed health measures on behalf of the child’s presumed health needs (Halvorson et al., 2005). Apart from having to make use of heavily teacher-dependent strategies, classroom teachers reported using others that required them to undertake less active participation in their student’s daily self-care development. All teachers indicated using supervision (Nguyen, Mason, Sanders, Yazdani, & Heptulla, 2008), to monitor the child’s health behaviors and for determining when more involved intervention (e.g., assisting with medical procedures, first aid) was required. However, teachers generally reported difficulty with identifying the symptoms of hypoglycemia and hyperglycemia as they manifested in the body of the particular child and how these symptoms related to long-term health impacts. As Paul lamented,

His sugar can be extremely high and extremely low, where my EAs [educational assistants] have said he should be in comatose. . . . But he appears fine. He is sitting down and he’s engaged, talking. This picture does not make sense to me and it is frustrating to grasp what is going on here. . . . I’m often meeting up with my EAs and asking, “What is this doing for his future years? What is this doing for him later on in his life if his numbers often appear around 2.0 and these should be around 4.0 to 5.0? What is his lack of consistency doing for him later on in life, down the road?” (020N)

Last, teachers included the child’s classmates and school peers in the process of self-care development through peer support and mentorship models (Embuldeniya et al., 2013), with Kathleen and Lacy facilitating the construction of inclusive learning communities through students joining together to learn about developmental health activities and to partake in buddy systems, while Casandra and Tim offered the chance for their students to spend time with other students at school with diabetes for extended periods of time to learn how these students have managed. Similar to Shiu (2004), teachers who offered their student or students peer support and mentorship generally felt these strategies proved useful in complementing their caregiving functions and increasing the child’s self-confidence. Casandra remarked,

The students in the school with diabetes were like teammates—they took on the challenge to pursue a common goal and ended up realizing it together. It’s a good life lesson and it changed my relationship with him. . . . It’s no longer just standing up there and telling the students what to do. I became the parent and a babysitter. I became a doctor and a nurse to him. I became a coach and a counsellor. I am not just a teacher anymore, I am so much more. (04NB)

Overall, the teachers’ reported contributions to medical care at school reflected involvement with important facets of students’ medical health needs (Nabors et al., 2008). Unlike some teachers in other studies (Piper & Smith, 2003), the interviewees for the most part expressed having a very “hands-on” approach to the medical care of their students. For example, most teachers said they adapted their teaching practice in ways applicable to the administration of medical services, especially to the contributions of medical health and safety support. They talked about making sense of and following through on medical, hygiene, and safety protocols, as well as monitor students’ behaviors from an educational health viewpoint.