An exploratory study of adolescents and emerging adults with spina bifida knowledge of their individual education program: Implications for health care transition planning

The findings of this preliminary study provide insights about the respondents’ IEP experience and knowledge. As revealed by their responses, all AEA with SB acknowledged that they had an IEP and the majority of respondents indicated that they had attended their IEP meeting (Table 2). These findings are comparable to selected findings of the National Transition Longitudinal Study (NTLS) for older students (15 to 19 years) [27] and higher than in previously reported smaller studies that explored IEP attendance [28, 37, 38]. Unlike other studies, in this investigation, the composition of the membership of the respondents’ IEP team was queried. As their responses indicated, the most frequently identified members were parents, followed by themselves, and the regular education teachers. Other members were identified by less than 50% of the respondents as presented in Table 2.

References to parents’ attendance was made most often in other studies as to their participation in IEP meetings [27, 28, 37, 38, 40] or indirectly in terms of consulting with their parents regarding their IEP [37]. In this study, the rates of attendance were higher than other reports of parental attendance [27, 28, 29]. As identified in other studies, both general and special education teachers were identified as to their membership on the IEP team [28, 38]. In this study, respondents identified general education teachers more often than their special education teachers, which is not evident in other studies published. The higher frequency in selection of general education teachers than for special education teachers by respondents may reflect inclusive educational practices wherein these special education students were enrolled in general education classes as well.

Of notable difference in the report of IEP team members in this study is the frequency which the AEA with SB identified school nurses as members of the IEP team ( n = 24, 30%) and other related services personnel (i.e., psychologist, occupational and physical therapists), although with less frequency, which had not been specified in other IEP studies. The selection of these team members is based in part on a closed-ended questionnaire item with a listing of potential IEP team members, based upon knowledge of the services AEA with SB receive in school settings [48]. These distinctive differences in needs for services and supports as identified in the IEP contribute to variations in the IEP experience for students with chronic conditions [27].

As evident from the responses of the AEA, these respondents demonstrated limited knowledge and understanding of their IEP. As Theme One: The Barometer of How I Am Doing and its subthemes reveal, the respondents viewed the IEP meeting as a gathering of school personnel to review their needs to perform academically in school. The statements made by the respondents primarily reflect a deficit-oriented approach, with scant acknowledgement by the participants of their strengths. There were no statements that indicated their sense of feeling competent about themselves academically. This deficit perspective was reported in several other studies as well [28, 38]. Coupled with this perspective shared by this sample of respondents were statements reflective of their lack of involvement in the IEP meeting. There were no references about student-initiated actions during their IEP meetings or involvement in decision-making. A tally of responses with the use of the first person (i.e., “I”) in 86 (51.5%) of the 167 statements generated by the AEA in this study support this view.

The lack of involvement by students in their IEP team meetings was identified in other studies as problematic as well [28, 37]. Although the reasons for the lack of involvement were not examined in this study, other studies attributed lack of involvement to discomfort in sharing information [37] and the belief their input would not be valued [28]. Lack of preparation for the IEP meeting was also cited as a contributor to the AEA’s reluctance to participate in their IEP meeting [36].

Theme Two: Creating the Right Match for Learning and Theme Three: Obtaining the Right Assistance reflected the extent of their IEP understanding these AEA possessed. Theme Two responses disclosed that their overall understanding of the purpose of the IEP meeting was to assist them academically. However, the views presented were often vague, leaving out content that signaled informed understanding. This perspective might serve to create the impression that the student perceived that his/her presence would be treated in much the same manner as in the classroom, thus adopting an attitude of passivity. That is, the student attending this meeting may have expected the school personnel and administrators to take the lead, similar to the classroom environment. Additionally, an IEP meeting composed of a team of school personnel likely consisted of more school personnel than the student had encountered previously in school meetings, some of whom the student may not have known or met before. A meeting of this composition and under these circumstances may create an atmosphere wherein the student would feel uncomfortable. These same issues of discomfort, student passivity, and lack of involvement with decision-making were raised in other studies as they have been identified as an ongoing problem and not representative of the original intent of the IDEA legislation [20, 28, 37, 38].

With Theme 3: Obtaining the Right Assistance, the respondents were able to provide more specific information, although the extent of accommodations and supports provided were limited in number and description. Several comments made by the participants were specific to their SB disability, such as wearing braces. Unlike other studies cited, respondents in this study referred to specific accommodations needed for their condition, reflecting the unique disability experience of this sample of students with SB and its influence on their IEP [27].

In Theme Four: Future Goals and Planning, the respondents cited comments that reflected a future planning orientation. Just two comments referred to employment; no comments were provided pertaining to postsecondary education, unlike findings referring to postsecondary planning in other studies [27, 29]. However, the mean age of this sample is 15.3 years, suggesting that the discussion of post-secondary planning may have likely not occurred in these earlier grades, although provisions of IDEA enable IEP transition planning to begin before age 16.

In general, input provided by AEA in this study consisted of brief statements, sometimes amounting to a few words which were not fully descriptive of their lived IEP school experience. As examples, AEA often used second or third person pronouns in their written responses rather than the more personal perspective of using first person pronouns. Slightly more than half of the statements (51.5%) contained first person statements (i.e., “I”, “me”, “my”, “we”).

As the findings of this study reveal, assumptions about AEA’s understanding and involvement with their IEPs warrant scrutiny to determine the extent to which AEA have the knowledge necessary to fully understand and participate in the IEP process. For students with SB, it is likely that they will have IEPs as they will qualify for special education services based on their physical disability and/or cognitive limitations. Understanding the rights and protections available with an IEP is an essential lifestyle self-management competency to acquire for AEA with SB. Other IEP opportunities to learn and practice lifestyle self-management skills such as requesting health-related accommodations or discussing their needs for academic assistance were not evident. The findings of this study reveal that AEA with SB who participated in this study had insufficient and limited knowledge and understanding of IEPs despite their lived experience, which is concerning.

It is evident that preparatory training for attending and participating in IEP meetings for AEA with SB would assist them in learning to be more engaged and support health-related and lifestyle self-management knowledge and skills. Instruction and assistance support not only with educators but with the members of the HCT interdisciplinary team who are involved with health care transition planning is needed. Learning to live independently with a childhood-acquired condition involves a wide array of lifestyle knowledge and skills beyond those typically associated with chronic care treatment management. The recommendations of professional associations have recognized the role health care professionals have in working with educators, related services personnel, students, and parents to ensure that the services and supports needed to perform in school are available [49, 50, 51, 52].

Future studies are needed to better understand the barriers AEA with chronic conditions encounter in educational settings. Examination of the factors that support and impede AEA with chronic conditions in participating more fully in their IEPs would provide insights for health care professionals to develop and implement evidence-based supports and services in educational settings.

Several limitations are noted with this exploratory study. The data were collected anonymously, which limited the collection of additional demographic information, although the intent of this investigation was exploratory. Data were collected from English-speaking AEA, thereby excluding those who were non-English speakers. Survey data were obtained from a predominately Hispanic sample of AEA, which may not be extrapolated to other ethnically diverse samples of AEA with SB. Participants with a documented diagnosis of intellectual disability were excluded. AEA were recruited from school districts in the southern part of the state, which also may limit transferability. In light of this selection bias, other investigations are warranted with larger samples of AEA with SB to explore what differences might exist pertaining to ethnicity. Additionally, studies of AEA with intellectual disabilities would enable insights as to the extent of their IEP understanding and exploration of differences with AEA without intellectual disabilities.

As evidenced by the findings, data collected were limited by the writing abilities of the AEA who participated in the study. Additional insights may have been gained by interviewing AEA, as it is likely it would have been easier for them to express themselves orally rather than in writing. Self-report is another limitation, as respondents may be inclined to offer perspectives that are not entirely reflective of their genuine attitudes. Participants’ level of cognitive functioning was not systematically assessed using measurements of IQ, but relied on identification of primary and secondary diagnoses, which would be a factor for some of the AEA.

5. Conclusion

The findings of this exploratory study reveal the IEP knowledge gaps and lack of lifestyle self-management skills reported by AEA with SB. The study findings contribute to the body of evidence that demonstrate that AEA with chronic conditions, including those with SB, are ill-equipped to derive the full benefits of involvement in IEP planning. It is evident that health care professionals involved with HCT have a key role in assisting AEA with chronic conditions and families to become knowledgeable and skilled with the lifestyle self-management needed in academic settings. The acquisition of these relevant competencies reflects the precursor benchmarks for becoming self-determined and making the passage to adulthood effectively. Future investigations using multi-methods designs with larger samples of AEA with SB are needed. A myriad of questions exist that warrant investigation. For example, what are the perceived barriers and facilitators of AEA with SB affecting their IEP participation, their level of IEP satisfaction, and the relationship associated with their academic performance and school social engagement? Examination of the association of academic performance and long-term postsecondary outcomes that warrant investigation include some of these possibilities: exploring social determinants affecting lifestyle self-management; the influence of inclusive educational approaches and participation in job training and career preparation experiences on the acquisition of lifestyle self-management knowledge and skills, to name a few. As revealed in this preliminary investigation and current body of evidence, research is needed to improve our understanding of the lived experiences of AEA with chronic conditions in educational settings to enable their fuller participation and improvements with academic performance as envisioned in IDEA legislation.