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Abstract

PURPOSE:

The purpose of this study was to explore adolescents and emerging adults (AEA) with spina bifida (SB) understanding of their Individualized Education Program (IEP) and to identify factors related to their knowledge about their own IEP.

METHODS:

Data were collected from January 2015 to July 2016 from 79 adolescents with SB. A ten-item questionnaire including demographics and questions specifically addressing IEPs was used. Qualitative analysis followed an iterative, emergent approach. Two experienced coders independently read and coded each of the three open-ended questions. It was determined that the responses of all three questions could feasibly be merged as the analysis of responses were similar.

FINDINGS:

This was a predominately 70 (88.7%) Hispanic sample of AEA with SB who ranged in age from 12 to 20 years ( $M=$ 15.3 years) consisting of 41 males and 38 females. All reported they have/had an IEP. Four major themes and eleven subthemes emerged from the analysis. Major themes were: The Barometer of How I Am Doing, Creating the Right Match for Learning, Obtaining the Assistance I Need, and Future Goals and Planning.

CONCLUSIONS:

Findings of this study reveal the IEP knowledge gaps and lack of lifestyle self-management skills AEA with SB reported pertaining to IEPs.

Keywords

Spina bifida individualized education program health care transition planning adolescents and emerging adults

1. Introduction

Survival rates of children diagnosed with chronic conditions have improved dramatically; the life expectancy of over 90% of these children extends into adulthood [1, 2]. For children born with spina bifida, the projected survival into their 20s is 60% to 76%, dependent upon the level of severity [3, 4, 5, 6]. In total, the annual estimate of those with chronic conditions entering adulthood is nearly one million [7]. However, these improvements in survival rates of adults with childhood-acquired chronic conditions provide an incomplete representation of outcomes pertaining to their lifestyles. Repeatedly, investigations of educational achievements, employment, and community living of adults with childhood-acquired chronic conditions have revealed outcomes that are not comparable to adults without chronic conditions [8, 9, 10]. With the increasing numbers of emerging and older adults with childhood-acquired chronic conditions, improvements in both the pediatric and adult service models of health care become imperative to effectively address their comprehensive biopsychosocial and developmental needs.

The health care transition (HCT) service model has emerged to address this complex health care discontinuity in the system of care for emerging adults with chronic conditions. The HCT service model is designed to establish linkages not only between two very different models and cultures of health care but also other non-health-related systems of services and supports relevant to the emerging adults’ developmental needs (i.e., postsecondary education, employment) [11, 12, 13, 14, 15, 16]. Comprehensive HCT services are designed to facilitate not only the transfer of services to the adult system of care, but also the transition to the developmental stage of adulthood that is predicated on promoting their highest potential and eventual achievement of the passage to adulthood [17].

Integral to the achievement of successful HCT outcomes is the development of health-related and lifestyle self-management knowledge and skills that adolescents and emerging adults (AEA) with chronic conditions need to acquire associated with their biopsychosocial and developmental needs. These responsibilities include ongoing condition surveillance, managing daily treatment regimens, and engaging in proactive preventive health behaviors [18]. For AEA with spina bifida (SB), their physical impairments most often require ongoing mobility assistance, continual management of bowel and bladder continence, and regular monitoring for adverse complications (e.g., shunt malfunctions) and preventable illnesses (e.g., urinary tract infections) [19].

Additionally, a comprehensive HCT model of care addresses the needs of AEA with SB and other chronic conditions to learn lifestyle self-management knowledge and skills to function both independently and autonomously while competently managing their daily treatment requirements. Lifestyle self-managementcompetencies refer to the acquired skills and knowledge needed to live independently and inclusively in the community together with the functional limitations imposed by chronic care needs. Examples of these competencies include managing interruptions during social activities for treatment-related concerns and tasks as well as managing accessibility and mobility in community settings. Other competencies entail obtaining needed accommodations in work, recreational, and educational settings. The school environment can be challenging for AEA with chronic conditions as they may need additional assistance and accommodations to manage the daily tasks associated with their condition and to perform academically. AEA with chronic conditions manifest vulnerabilities pertaining to academic achievements [20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33] demonstrating the importance of academic and health-related support to create the optimal educational environment they need. The lower academic achievement of students with chronic conditions as compared to students without chronic conditions is evidenced by findings of lower rates of graduation, higher rates of absenteeism, grade retention, higher rates of high school dropout and lack of parental participation in their educational activities [34, 35]. The challenges and trajectories for AEA with spina bifida may differ from those experienced by AEA with other chronic conditions. For example, Young and colleagues studied transition to adult health care among adolescents and young adults with spina bifida, cerebral palsy, and brain injuries acquired during childhood. They found that while those with SB reported the lowest health scores, adults with SB were also the group most likely to have a college degree or higher level of education, to work full time, and to be living alone [36].

The Individual Education Program (IEP) is the pivotal educational process in secondary school settings to enable AEA with chronic conditions to identify their needs for academic and health-related accommodations in order to obtain the modifications needed to facilitate their academic performance and school involvement. Over forty years ago, the Education for all Handicapped Children Act of 1975 (P. L. 94–142) [21] was established enabling children and youth with disabilities “…a free appropriate public education which emphasizes special education and related services designed to meet their unique needs.” This landmark legislation specified that students with disabilities should attend their IEP meetings. Since that time, additional federal legislation (Individuals with Disabilities Education Act [IDEA], also referred to as the Individuals with Disabilities Education Improvement Act [IDEIA]) was passed to ensure the student’s full involvement in the IEP to include genuine participation in the planning and decision making; this transition planning could be initiated before age 16 as deemed appropriate [22, 23, 24, 25, 26]. The IEP process is an ideal opportunity for students with chronic conditions to acquire lifestyle self-management skills such as sharing information about their needs for academic assistance, learning to self-disclose appropriately, requesting health-related accommodations, and engaging in adaptive physical activities. Their IEP participation provides them the opportunity to discuss their views of the proposed educational program and share their curricular interests and preferences with educational personnel and the parent(s). Expressing oneself to others, especially authority figures, is a valuable IEP learning opportunity for learning self-advocacy skills [20].

As specified in federal legislation, it is expected that students eligible for special education are supported and encouraged by educational personnel to participate fully in their IEP [21, 22, 23, 24, 25, 26]. However, the findings of studies exploring the participation of adolescents in their IEP reveal this legislative regulation to be far from realized. The literature documents widespread lack of alignment with the IDEA legislative aims pertaining to IEP transition planning. Several studies indicated that most students had incomplete understanding or knowledge of the purpose of the IEP [37, 38] and lack of preparatory instruction for IEP development [37]. Other concerns raised regarding students’ IEP involvement included discomfort with providing input during the meeting [38]; belief that their input would not be valued [27, 28]; lack of involvement with IEP planning and decision-making; and that the IEP was largely deficit-oriented [28, 39]. Additionally, students’ non-attendance in their IEP meetings was associated with the lack of: a) parental involvement in the IEP meeting, b) IEP instructional preparation by their teachers, and c) understanding of the IEP meeting purpose [27, 28, 37].

The findings of these studies suggest that students with chronic conditions are ill-prepared to be comfortably involved in their IEP meetings and process. Transition best practices pertaining to authentic student and parent IEP involvement as enumerated in federal laws governing special education (i.e., IDEA) were largely unaccounted for in the aforementioned studies presented. However, promising effects and practices to facilitate the “authentic” and “meaningful” involvement of adolescents with chronic conditions in their IEPs have been reported [28]. Studies have demonstrated the potential effectiveness of implementing a structured curriculum program to facilitate IEP participation and the development of self-determination skills of students with chronic conditions [40, 41].

Given the aforementioned issues, challenges, and opportunities associated with the IEP process, it is relevant to address this academic experience for HCT planning as it intersects with the ongoing management of their chronic conditions. It is germane to explore the extent to which adolescents with chronic conditions, including those with SB, have knowledge and understanding of the IEP. The purpose of this study was to explore AEA with SB’s knowledge of their IEPs and to identify factors related to their knowledge about their own IEP. Members of the authoring team are affiliated with the Children’s Hospital Los Angeles Spina Bifida Program that provides interdisciplinary services to the AEA with SB who were recruited for this study. Additionally, this exploratory study was conducted to investigate the feasibility of conducting a more in-depth investigation with a larger sample and a design that involves triangulation of quantitative and qualitative methods.

To date, no studies have explored the knowledge of AEA with SB enrolled in special education programs pertaining to their IEPs. We sought to explore AEA with SB’s understanding of their IEPs and to identify factors related to their knowledge about their own IEP. This is especially pertinent for comprehensive HCT planning as the IEP provides the opportunity to address health-related concerns as they pertain to the impact of their chronic condition on academic performance, needs for health-related accommodations, and social inclusion.

2. Methods

2.1 Procedure

This exploratory study using a descriptive design was conducted to investigate the AEA with SB’s understanding of their IEPs. A survey approach was used to elicit their self-reported responses from the questionnaire. Data were collected from January 2015 to July 2016 from 79 AEA with SB recruited from a SB program at a pediatric regional medical center located in an urban area of a Western state. Eligibility criteria included: 1) age 12 years to 20 years; 2) diagnosis of SB; and 3) ability to speak English. AEA were excluded if they had an intellectual disability and/or mental illness diagnosis or if they could not complete the survey without assistance.

This study was reviewed and approved by the CHLA Institutional Review Board. AEA who met the eligibility criteria (and, if younger than 18 years of age, their parents) were approached and provided with preliminary information about the study in terms of its purpose and methods for data collection. If the parent and youth indicated interest in the study, then the information sheet describing the study was shared and reviewed with both; and if 18 years and older, only the information sheet was provided to the youth. Informed consent/assent was deemed not necessary by the IRB since limited demographic data (gender, age) were collected to ensure confidentiality.

2.2 Instrumentation

IEP Survey Questionnaire: Data for this study were collected using a ten-item questionnaire including demographics and questions specifically addressing IEPs. Demographic items assessed participants’ age, gender, and race/ethnicity. This questionnaire was devised using an iterative process by the researchers advising students, AEA, and families about the purpose and use of an IEP along with providing consultation to them about its application for advocacy and instructional purposes. Content validity was ascertained by repeated reviews and revisions of the questionnaire by the research team. Additionally, application of the IDEA provisions as they pertained to IEPs of the IDEA regulations and literature pertaining to IEPs served as the theoretical underpinnings of this survey questionnaire [21, 22, 23, 24, 42, 43, 44]. Since the IEP includes both annual goal setting and participation, these were chosen as elements of inquiry for the youth respondents. IEP-specific items included seven closed-ended questions concerning selective demographic data and queries as to whether they had an IEP, whether they had attended their IEP meeting, and others who had attended their IEP meeting. The three open-ended questions were 1) Do you know what an IEP is? 2) Name one thing that your IEP is supposed to help with; and 3) Why do you have an IEP? Respondents’ input was elicited pertaining to their knowledge of an IEP, assistance provided as delineated in the IEP; and their understanding about why they have an IEP. Participants entered their responses directly onto the questionnaire template on a laptop computer.

2.3 Data analysis

Qualitative analysis followed an iterative emergent approach, guided in part by the 9 required elements of an IEP: present level of performance, annual goals, monitoring of progress toward goals, special education and related services to be provided, program modifications or supports, explanation of nonparticipation in school activities, assessment accommodations, explanation of alternate assessment, and dates and duration of services [45]. The coders initially attempted to code for each of the required elements of an IEP; however, few of the participants actually addressed IEP elements in their comments. The coders examined the responses for apparent age differences of the written responses with sentence construction and level of conceptual understanding conveyed developmentally. Differences according to chronological age were not readily apparent. It was then decided to alter the approach to coding process to follow a structural coding approach similar to that recommended by MacQueen and colleagues [46]. Two experienced coders (CB and SMH) independently read through all responses and coded each of the three open-ended questions separately. The coders met to compare and discuss the codes and themes that each identified, agreeing upon a final set of codes. The coders then reviewed the themes that emerged from the three questions and concluded that similar themes were voiced across questions; therefore, rather than analyzing the data from the three questions separately, data were analyzed by subject without separation by question. Each coded all data separately and then met to compare coding, following the methods discussion to reach coding consensus described by Palinkas’ group of investigators [47]; any discrepancies were discussed and, in each case, the two coders reached agreement on how the text should be coded. Following this initial analysis, patterns of subthemes were reviewed and analyzed for major overarching themes, conducted initially by one of the researchers and confirmed by the second researcher after review.

2.4 Sample

Originally, 83 respondents were recruited for the study. Survey responses of four participants were excluded for analysis for the following reasons: a parent took an active role as a proxy respondent; one survey file was inadvertently deleted and not retrievable; one respondent only answered demographic items and left all other questions blank; and one respondent did not meet the age inclusion criterion. The final analytic sample was composed of 79 adolescents and emerging adults who for the most part received services from the Movin’ On Up health care transition program in the CHLA SB program.

3. Results

As depicted in Table 1, this was a predominately (70, 88.7%) Hispanic sample of AEA with SB who ranged in age from 12 to 20 years; mean age was 15.3 years. Nearly equal numbers of males ( $n=$ 41) and females ( $n=$ 38) completed the survey (Table 1). The entire sample reported that they have/had an IEP. Sixty-eight participants (86.1%) affirmed they had attended their IEP meeting (Table 2). When asked who had attended their IEP, the most frequently identified participants were parents/guardians (66, 83.5%), themselves (54, 68.4%), and regular education teachers (42, 53.2%), special education teachers (31, 39.2%), school nurses (24, 30.4%), and principals/vice-principals (19, 24.1%). Other members identified with less frequency were related services personnel as presented in Table 2.

Table 1
Demographic data

$N=$ 79
Gender
Male	41 (51.9%)
Female	38 (48.1%)
Age	Mean age	$M=$ 15.3 years
	Age range	12 to 20
Age breakdown	Age	Number
	12	11 (13.9%)
	13	9 (11.4%)
	14	16 (20.2%)
	15	8 (10.1%)
	16	9 (11.4%)
	17	7 (8.9%)
	18	13 (16.5%)
	19	5 (6.3%)
	20	1 (1.3%)
Race/ethnicity
Hispanic	70 (88.7%)
Caucasian	3 (3.8%)
Black	4 (5.0%)
Asian	2 (2.5%)

Table 2

Do you have an IEP?	Yes	79 (100.0%)
Have you ever	Yes	68 (86.1%)
attended your	No	9 (11.4%)
IEP meeting?	Not answered	2 (2.5%)
Who attended	Parents/guardians	66 (83.5%)
your last IEP?	I attended	54 (68.4%)
	Regular education teachers	42 (53.2%)
	Special education teachers	31 (39.2%)
	School nurses	24 (30.4%)
	Principals/vice principals	19 (24.1%)
	Psychologists/counselor	13 (16.5%)
	PT, OT, speech and language therapist	9 (11.4%)
	Social workers	7 (8.9%)
	Others I don’t know attended	5 (6.3%)
	Other responses (health care assistant, science teacher, PE teacher, geometry teacher*, I do not know)	5 (6.3%)

*Categorized as other responses as not known if special or general education teachers.

However, when asked if they know what an IEP is, 36 respondents (45.6%) said no, indicated that they did not know, or failed to respond to the question at all. An additional 13 participants (16.5%) said yes but offered no further explanation. Thirty respondents (37.9%) provided a narrative answer which could be coded. When asked to name one thing their IEP is supposed to help with, fifty-three (67%) provided a response; one-third of the sample either said they did not know or left the question blank. A similar proportion (39.2%) said they did not know why they have an IEP or left that question blank, whereas 48 (60.8%) responded with an answer. Looking at data across the three qualitative questions, 19% of respondents either did not know the answer or left the question blank for all three questions (Table 3).

Table 3

	Yes (no other response)	No* (no other response)	Gave narrative response	Don’t know*	No answer
Q6: Do you know what an IEP is?	13 (16.5%)	10 (12.6%)	30 (37.9%)	12 (15.2%)	14 (17.8%)
Q8: Name one thing your IEP is supposed to help with.	N/A	N/A	53 (67.0%)	13 (16.5%)	13 (16.5%)
Q9: Why do you have an IEP?	N/A	N/A	48 (60.8%)	21 (26.6%)	10 (12.6%)

*No and don’t know were not combined as responses were depicted as directly stated by participants.

Four major themes and eleven subthemes emerged from the qualitative analysis of the narrative data. The four major themes and their subthemes are described below (Box 1).

Box 1

Theme one: The Barometer of How I Am Doing

Grades and how I am doing in school

Engage and/or inform parents

Areas for improvement

Theme two: Creating the Right Match for Learning

Helps me do better in school

Match school program to child’s needs

Return to or change schools

Theme three: Obtaining the Assistance I Need

Test-related accommodations

General help and accommodations

Physical disability or health

Theme four: Future Goals and Planning

Make goals and future plans

Work

Theme One: The Barometer of How I Am Doing. Participants who provided narrative responses described the IEP as an assessment of their current academic status in school and their learning competencies, and something that delineates the services and supports that they need to perform well in school. According to these participants, the IEP identifies learning needs in order to assist them in meeting the requirements of the classes he/she is enrolled in for the academic year. The subtheme Grades and How I Am Doing was endorsed by 22 participants (27.8%), and is illustrative of the respondents’ understanding that the IEP serves as the barometer of the student’s learning strengths and needs. Typical statements reflecting this subtheme include, “[the IEP is] to talk about my school habbits (sic) and how I am doing” (respondent #23, 12-year-old female), and, “yes it is a meeting about all your teachers to meet up with you dicuss (sic) what is going on in your education” (respondent #12, 12-year-old male). In subtheme, Engage and/or inform parents, four respondents (5%) reported that one purpose of the IEP was to apprise their parents of their academic status in school. One of the respondents described their IEP meeting as follows: “what I know about the IEP is that all my teachers and principal get together with my parent to talk about how I am doing in all my classes and also if I am having trouble in anything” (respondent #85 16-year-old female). The third subtheme, Areas for improvement, reflects the statements of 10 respondents (12.6%) that described the IEP as prescriptive for developing a plan of remediation for academic improvement. Statements reflecting this perspective include: “think that I have a iep to see in what subjects I need help in and in thngs (sic) I can improve on” (respondent #22, 13-year-old female); and “Yes it’s a packet that contains your goals for the year & recommendations on how to become a better student” (respondent #46, 20-year-old male).

Theme Two: Creating the Right Match for Learning is composed of three subthemes. This theme and its subthemes are representative of respondents’ general understanding of the IEP process itself. The first subtheme, Helps Me Do Better in School, was endorsed by 33 participants (41.8%) and demonstrates the generality of understanding of the IEP as evident in the following statements: “help with in school services” (respondent #4, 19-year-old female); and, “form (sic) what I know its (sic) to talk about my school education and how they can help me out more with my disabilities” (respondent #52, 15-year-old male). Subtheme two, Match school program to child’s needs, was cited by nine participants (11.4%) and refers to the respondents’ awareness that one goal of an IEP is to individually adjust a child’s school program to facilitate his or her successful achievement in school. Examples of these subtheme statements are: “it’s a plan to major my education according to my needs” (respondent #48, 18-year-old male); and, “IEP is to help people who have problems learning and to find the best program needed” (respondent #36, 18-year-old male). Three respondents (3.8%) indicated that their IEP was the catalyst for a change in their schooling, as evidenced in the third subtheme of theme two, Return to or change schools. For example, one of the respondents (#38, 18-year-old female) noted the IEP assisted “to be enrolled in a non-public school.” Theme Three: Obtaining the Assistance I Need included three subthemes. In contrast to the broad and sometimes vague information coded in theme two, responses included in this theme comprise comments that included specific information as to respondents’ understanding of the IEP purpose. Information in this theme demonstrated a more informed understanding of the IEP. Respondents were able to describe very specifically the services and supports (i.e., accommodations) they could obtain to assist them to learn and fully participate while in school. The subtheme Test-related accommodations included information from three participants (3.8%) who specifically cited the role of the IEP in identifying or granting special assistance for testing. One typical comment was, “give me more time on tests, taking notes” (respondent #28, 18-year-old female). Twenty-two (27.8%) of respondents referred to non-test-related accommodations that would assist them in school, as categorized in the subtheme, General help and accommodations. This subtheme is illustrated by a 17-year-old male (respondent #9), whose description of an IEP stated, “It’s a plan for a student with special needs to help him or her out with any accommodations that can be made for the student prior to his necessities at school so that everything can be msde (sic) easier for him or he”. The third subtheme, Physical disability or health, included data from seven participants (8.9%). These respondents replied that the reason they had an IEP, or a major focus of the IEP, was their disability. Statements that were characteristic of this subtheme include, “because I wear braces” (Respondent #51, 16-year-old male), and, “understand more about spina bifida” (Respondent #74, 12-year-old male).

Theme Four: Future Goals and Planning, comprises two subthemes reflected in statements made by respondents as to the future planning objectives identified in their IEP. The respondents described future plans related to the secondary school activities or those post high school graduation/exit. These students recognized that the IEP addressed academic supports and services that were designed to support their future achievements. The subtheme Make goals and future plans included data from 15 (19.0%) participants, and comprised statements that reflected future planning and goal setting for purposes of academic improvement. Typical comments include, “one thing is helping with is to setup goals to improve in school” (Respondent #22, 13-year-old female), and, “to talk about my grades and help me with m (sic) learning skill in order to graduate this year” (Respondent #71, 18-year-old female). Two (2.5%) respondents identified specific IEP future planning activities in the subtheme Work. A representative comment categorized within this subtheme stated, “…IEP helped me found my first job” (Respondent #60, 19-year-old male).

4. Discussion

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.

Footnotes

Conflict of interest

None to report.

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

Abstract

PURPOSE:

METHODS:

FINDINGS:

CONCLUSIONS:

Keywords

1. Introduction

2. Methods

2.1 Procedure

2.2 Instrumentation

2.3 Data analysis

2.4 Sample

3. Results

Table 1 Demographic data

5. Conclusion

Footnotes

Conflict of interest

References

Table 1
Demographic data