Involvement of Students With Severe Disabilities in Specialized Health Care Procedures

Abstract

A recommended practice in the field of severe disabilities is involving students in their specialized health care procedures; however, little is known about how this practice is occurring in schools. The purpose of this qualitative multiple-case study was to understand how secondary-age students with severe disabilities are involved in their specialized health care at school. Purposeful sampling resulted in nine cases and a total of 41 participants. A case comprised a secondary-age focus student and the student’s parent(s), special education teacher, school nurse, and classroom nurse or paraprofessional. Data sources were observations, interviews, and document reviews. The researchers analyzed the data using an iterative inductive coding approach for each individual case to identify patterns in the data followed by a cross-case synthesis using visual matrices to identify salient themes across cases. This process resulted in four themes depicting how students were involved in their specialized health care at school, which were (a) partially participating, (b) interacting with adults, (c) engaging in risky behaviors, and (d) passively participating. The findings from this study highlight a need for improved attention to the promotion of self-care in specialized health care for this population.

Keywords

self-care severe disabilities complex health care needs transition

Self-care skills promote autonomy, physical health, and social-emotional well-being. For children and youth, the acquisition of age-appropriate self-care skills is a natural and essential part of development and transition to adulthood. Self-care behaviors involve a broad range of skills for the personal management of one’s own care. Many of these skills are health related, ranging from handwashing to more complex self-care routines that include the management of specific health care conditions. When provided opportunity, systematic instruction, and supports, students with severe disabilities can achieve independence in typical health-related self-care skills, including handwashing (Probst & Walker, 2017), self-feeding (Azrin & Armstrong, 1973), toothbrushing (Horner & Keilitz, 1975; Probst & Walker, 2017), toileting (Azrin & Foxx, 1971), and menstrual care (Richman, Reiss, Bauman, & Bailey, 1984).

Students with severe disabilities have a significant intellectual disability and may have one or more additional disabilities in the areas of behavior, communication, health, mobility, and sensory functioning (Westling, Fox, & Carter, 2015). It is not uncommon for students with severe disabilities also to have complex health conditions (Elias, Murphy, & Council on Children with Disabilities, 2012). This subset of students has self-care needs related to health care that are significantly greater and more substantive than those of other students (Porter, Branowicki, & Palfrey, 2014). These students frequently require specialized health care procedures (SHCPs), medical technology (e.g., feeding tubes, urinary catheters), or the services of a registered nurse. Within school settings, common SHCPs include blood glucose testing, clean intermittent catheterization, insulin injections, nebulizer administration, ostomy care, oxygen delivery, suctioning, tracheostomy care, tube feedings, and ventilator management. School nurses, and personnel trained and supervised (i.e., delegated) by school nurses, are responsible for implementing SHCPs in school settings (Heller, Forney, Alberto, Schwartzman, & Goeckel, 2000) and overseeing student self-care therein. Although SHCPs vary in duration for individual students, it is not uncommon for SHCPs to constitute a sizeable portion of a student’s school day; therefore, these opportunities for instruction in self-care are of notable value for maximizing students’ learning and promoting their independence.

In the past, the medical model (a deficit-based approach) informed educational service delivery for students with severe disabilities and SHCPs. Students were viewed as patients to be medically treated and cared for in schools rather than as competent learners (Reger, 1972). This deficit-based orientation resulted in wholly dependent caretaking practices (providing care to students without their involvement), thereby grossly limiting expectations for learning independence. Unfortunately, this problem may continue to persist (Lehr & Harayama, 2015). When specialized health care is completed for students without their involvement, students are at risk for learned helplessness, loss of self-efficacy and dignity, and poor adult outcomes in the areas of health, employment, and independence (Lehr & Harayama, 2015; Ward & Ward, 2014).

Numerous sources advocate teaching students with disabilities to be involved in their health care. A position statement issued by the Council for Exceptional Children, Division of Physical, Health, and Multiple Disabilities (CEC DPHMD, 2008), describes SHCPs as self-care skills and recommends that individualized education program (IEP) teams address these skills in IEP goals. It is also the position of the American Academy of Pediatrics that children and youth with disabilities should learn self-care to promote their health and transition to adulthood (Eichner et al., 2012). Furthermore, the existing literature describes self-care in SHCPs as an important curricular and instructional focus to help students with severe disabilities acquire personal care and self-advocacy skills as part of their school program (Brown, McDonnell, & Snell, 2016; Heller et al., 2000; Porter et al., 2014; Westling et al., 2015). Additionally, the CEC (2015) delineates specific knowledge and skills related to managing health care procedures that all beginning special education professionals should possess.

For students with severe disabilities, independent self-care may not be possible due to intellectual and other disabilities (e.g., physical, sensory). The CEC DPHMD (2008) identifies four types of student involvement in SHCPs to target for IEP goals. These are (a) independent performance (doing the steps in the SHCP by oneself with supervision as needed), (b) partial participation (assisting with or completing some steps independently), (c) directing someone else in performance (telling a caregiver the steps to complete), and (d) knowledge of SHCPs (understanding and demonstrating knowledge of why and when the SHCP is necessary).

A limited, but dated, body of research exists that identifies effective strategies for teaching students with disabilities to perform their SHCPs. These studies focus on students with mild or moderate intellectual disability or students with physical disabilities without intellectual disability. Four studies targeted independent performance with children ages 4 to 8. Skills taught included self-catheterization (Hannigan, 1979; Neef, Parrish, & Hannigan, 1989; Tarnowski & Drabman, 1987), and self-suctioning (Derrickson, Neef, & Parrish, 1991). Procedures included total task forward chaining, least-to-most prompts, and systematic reinforcement as well as caution steps (i.e., interrupting and providing physical assistance to prevent errors and potential injury). In three of these studies, participants were taught to criterion on a doll first (Derrickson et al., 1991; Hannigan, 1989; Neef et al., 1989). All four interventions were effective with follow-up data revealing that eight children maintained or nearly maintained complete independence and four children continued to progress steadily toward independence.

Only one study was identified that targeted partial participation in SHCPs. Bosner and Belfiore (2001) used total task forward chaining, least-to-most prompts, reinforcement, and caution steps to teach one 16-year-old with moderate intellectual disability partial participation in self-administration of insulin. The adolescent learned to complete preparation steps (e.g., wash hands, gather supplies) with 100% accuracy and to partially participate in administration by saying “ready” for both injecting the insulin and removing the syringe with 88% accuracy. Three weeks postintervention, performance progressed to removing the syringe independently.

The aforementioned studies describe effective strategies for teaching self-care in SHCPs but are limited in scope. None of the studies occurred in school settings; instead, they took place in pediatric hospitals, outpatient clinics, or home settings. These studies also excluded children and youth with severe disabilities, instead focusing on those with mild to moderate intellectual disability or physical disabilities without intellectual disability. Most participants were young children with only one participant selected at the secondary level. In addition, the studies targeted independence and partial participation but did not examine other methods of participation, such as directing one’s own care or knowledge of SHCPs.

Although the professional literature strongly endorses the involvement of students with disabilities in their SHCPs and existing research confirms that children and youth with disabilities can learn to perform their own SHCPs, little is known about how students with disabilities are actually involved in their SHCPs at school. For students who are nearing adulthood (middle school, high school, and post–high school students), self-care in SHCPs is an important age-appropriate part of their preparation for adulthood (Heller et al., 2000); however, there is some evidence to suggest IEP teams are not adequately addressing health goals or self-care instruction for students at the secondary level. Bargeron, Contri, Gibbons, Ruch-Ross, and Sanabria (2014) found self-care skills (managing medication and treatments) were addressed in less than 21% of IEPs and transition plans within 240 Illinois schools. This finding is particularly problematic for secondary-age students with severe disabilities, who are at risk for poorer postschool outcomes related to health, employment, and independent living when they are not involved with their SHCPs (Lehr & Harayama, 2015; Ward & Ward, 2014). This exploratory study helps to fill this gap by providing a deeper understanding of issues related to student involvement in SHCPs within the school context. The purpose of this study was to investigate the following research question: How are secondary-age students with severe disabilities involved in their SHCPs at school?

Little is known about how students with disabilities are actually involved in their SHCPs at school.

Method

Given the exploratory nature of this study, qualitative inquiry was best suited to answer this investigation’s research question (Creswell, 2014). A multiple-case-study design was used to understand how students with severe disabilities are involved in their SHCPs at school from multiple vantage points, specifically, different students and their respective SHCPs, school settings, and teams (Stake, 2006). This approach is consistent with a constructivist paradigm and the researchers’ epistemological stance that understanding is co-constructed between participants and researchers (Creswell, 2014). We collected data inductively with no predetermined notion of what might be found and included open-ended interview guides to elicit participants’ different experiences and understandings. We engaged in reflexivity throughout the research process to construct authentic descriptions that answered this investigation’s research question (Patton, 2015). One researcher is a parent of a secondary-age child with severe disabilities and SHCPs, and both researchers are educators in the field of severe disabilities with expertise in qualitative research from an applied educational perspective.

This investigation centered on secondary-age students with severe disabilities and SHCPs (hereafter termed “focus students”). A case consisted of an individual focus student, his or her parents, and all school personnel who provided or supervised the provision of the student’s SHCPs at school (special education teacher, school nurse, and classroom nurse or paraprofessional). Ethical approval for this study was obtained from the researchers’ university.

Recruitment

Recruitment began by sending an e-mail invitation to all licensed special education teachers at public middle and high schools serving students with and without disabilities located within 2.5 hr driving distance from the researchers. We obtained contact information for licensed special education teachers from the state education agency under the Freedom of Information Act. Special education teachers who responded were screened by telephone to see if they had at least one student who met inclusion criteria for participation. Student criteria included (a) enrollment in middle school, high school, or post–high school (i.e., ages 19–21); (b) presence of a severe disability; and (c) having a minimum of one SHCP completed at school. Severe disabilities was defined as primary eligibility for special education services under the category of autism, intellectual disability, or multiple disabilities and qualifying to take the state’s alternate assessment. SHCP was defined as a health procedure that required the oversight of a licensed nurse. Administration of oral medications was excluded as these procedures are typically shorter in duration and involve substantively fewer steps than more complex SHCPs (e.g., tube feedings, clean intermittent catheterization).

Parents, special education teachers, school nurses, and classroom nurses or paraprofessionals were eligible for participation based on their respective child’s or student’s eligibility. Special education teachers aided in identifying eligible participants during the telephone screening. All eligible participants in a case had to consent to participate for the case to be included in the study. Parents provided consent for their children’s participation regardless of age. Students provided assent to participate in the study during the initial site visit and prior to each observation of their SHCPs. In total, 32 potential cases were screened. Twenty-one potential cases did not meet student eligibility requirements, and in two cases, there was not a shared interest in participation across potential participants, resulting in nine cases selected.

Participants

Participants were (a) nine focus students, (b) 10 parents, (c) 10 special education teachers, (d) seven school nurses, (e) two classroom nurses, and (f) three paraprofessionals, for a total of 41 participants across nine cases. Table 1 displays focus student demographics. Three students were 12 to 14 years old (middle school), three were 16 to 18 years old (high school), and three were 19 to 21 years old (post–high school). Students qualified for special education services under the Individuals With Disabilities Education Act eligibility categories intellectual disability and multiple disabilities. The most common secondary eligibility category was other health impairment. Their overarching health conditions varied and included epilepsy, trisomy 12, spastic quadriplegic cerebral palsy, microcephaly, Coffin-Siris syndrome, spina bifida, Lennox-Gastaut syndrome, and type 1 diabetes. Five different types of SHCPs were provided at school. These were blood glucose testing, clean intermittent catheterization, insulin injections, nebulizer treatments, and tube feedings (i.e., gastrostomy enteral feedings). Students had one or two different SHCPs; however, tube feedings were the most prevalent type of procedure. SHCPs ranged in duration from 10 min to 2 hr, with a mean of 38 min.

Table 1.

Focus Student Characteristics.

Focusstudent	Gender	Age	Grade	Ethnicity	Primary eligibility	Secondary eligibility	Health condition	Type of SHCP	Vision andhearing	Communication	Mobility	Problembehavior
Eva	F	18	12	East Indian	MD	—	Trisomy 12, epilepsy	Tube feeding	VI	Affect, gestures, vocalizations, some AAC	Uses a wheelchair, walks with supervision, gross- and fine-motor difficulties	Yes
Iris	F	20	Adult	White	MD	VI	Spastic quadriplegic CP, epilepsy	Tube feeding	CVI	Affect, vocalizations	Uses a wheelchair, limited mobility	No
Lyn	F	13	6	White	ID	OHI	Epilepsy	Tube feeding	Normal	Verbal speech	Uses a wheelchair for fatigue	Yes
Mae	F	21	Adult	White	ID	OHI	Coffin-Siris syndrome	Tube feeding	VI	Affect, gestures, vocalizations, some AAC	No reported difficulties	No
Nia	F	16	9	White	ID	OHI	Spina bifida	CIC	Normal	Verbal speech	Uses a wheelchair, ambulates with crutches, gross- and fine-motor difficulties	No
Rae	F	12	7	White	MD	DB	Spastic quadriplegic CP, microcephaly, epilepsy	Tube feeding, CIC	CVI, hearing impairment	Affect, eye gaze	Uses a wheelchair, limited mobility	No
Tye	M	14	8	Black	MD	—	Lennox-Gastaut syndrome	Tube feeding	Normal	Affect, gestures, vocalizations	Uses a wheelchair, walks with assistance, gross- and fine-motor difficulties	Yes
Wes	M	16	10	White	MD	VI	Spastic quadriplegic CP, epilepsy	Tube feeding, nebulizer treatments	CVI	Affect, vocalizations	Uses a wheelchair, limited mobility	No
Xan	M	19	Adult	White	ID	A	Type 1 diabetes	Blood glucose testing, insulin injections	Normal	Verbal speech	No reported difficulties	No

Note. A = autism; AAC = augmentative and alternative communication; adult = post-high school program for 19- to 21-year-old students; CIC = clean intermittent catheterization; CP = cerebral palsy; CVI = cortical vision impairment; DB = deaf-blindness; F = female; ID = intellectual disability; M = male; MD = multiple disabilities; OHI = other health impairment; SHCP = specialized health care procedure; VI = vision impairment.

Table 2 displays parent and school personnel demographics. Ten parents participated in the study, including nine mothers and one mother-and-father dyad. School personnel participants varied across cases because not all focus students required a classroom nurse or paraprofessional for their SHCP. In two cases, focus students had the same special education teacher, school nurse, and classroom nurse. In two other cases, students had the same school nurse. School personnel ranged considerably in their years of experience working with students who had severe disabilities and SHCPs, from 1 to 26 years, with a mean of 7.1 years.

Table 2.

Parent and School Personnel Demographics.

Focus student	Adultparticipant	Age	Race	Grade levels served	Years in current role	SD and SHCPcaseload size	Years experienceSD and SHCP
Eva	Mother SE teacher School nurse Paraprofessional	50–59 20–29 40–49 50–59	East IndianWhite Black White	— 9–12 9–12 9–12	— 3 7 16	— 1 1 1	— 2 3 16
Iris	Mother SE teacher School nurse Paraprofessional	40–49 30–39 30–39 50–59	White White White White	— 9–12, adult 6–12 Adult	— 5 2 16	— 1 2 1	— 5 2 16
Lyn	Mother SE teacher School nurse	30–39 20–29 40–49	White White White	— 6-8 6-8	— 2 3	— 2 1	— 6 3
Mae	Mother SE teacher School nurse^a Paraprofessional	50–59 60+ 40–49 40–49	White White White Black	— 9–12, adult 9–12, adult 9–12, adult	— 8 8 3	— 1 6 1	— 1 8 3
Nia	Mother–father SE teacher School nurse^a	50–59 60+ 40–49	White White White	— 9–12 9–12, adult	— 20 8	— 2 6	— 20 8
Rae	Mother SE teacher^b School nurse^b Classroom Nurse^b	50–59 30–39 50–59 30–39	White White White White	— 6–9 PreK–9 PreK–9	— 2 9 4	— 3 6 6	— 2 9 4
Tye	Mother SE teacher^b School nurse^b Classroom Nurse^b	30–39 30–39 50–59 30–39	Black White White White	— 6–9 PreK–9 PreK–9	— 2 9 4	— 3 6 6	— 2 9 4
Wes	Mother SE teacher School nurse Classroom Nurse	30–39 30–39 40–49 30–39	White White White White	— 9–12, adult PreK–12, adult 9–12, adult	— 6 9 3	— 2 40 2	— 6 9 3
Xan	Mother Co–SE teacher Co–SE teacher School nurse	30–39 50–59 20–29 50–59	White White White White	— 9–12, adult 9–12, adult 9–12, adult	— 26 1 2	— 2 2 8	— 26 1 2

Note. Adult = post-high school program that serves students ages 19 to 21 years old; SD = severe disabilities; SE = special education; SHCP = specialized health care procedure.

Same participant.

Settings

SHCPs occurred in special education classrooms for six focus students. In this setting, other school personnel (not responsible for students’ health care) and peers with disabilities were also present. SHCPs occurred in school nurses’ offices for two students and in a private therapy room for one student. No other school personnel or peers were present in these settings. Additionally, clean intermittent catheterization occurred in a private bathroom located in the special education classroom or school nurse’s office.

Data Collection

Data were collected by the first author through observations (field notes), interviews, and document reviews. Data collection occurred for no more than two cases simultaneously to avoid confusing the particulars of each case (Stake, 2006). Length of data collection for each case was 1.5 to 2 weeks.

Data collection guides

We developed data collection guides for each data source based on a review of the literature and recommendations for qualitative data collection strategies in ethnography and multiple-case-study research (Emerson, Fretz, & Shaw, 2011; Patton, 2015; Stake, 2006). One expert in qualitative health research and two experts in qualitative methodology and curriculum and instruction for learners with severe disabilities examined the data collection guides for content validity. Following minor revisions (e.g., addition and deletion of items to the document review guide, interview guide), we piloted all guides with a student and the student’s parents, special education teacher, and school nurse; these individuals were not participants in the study. Interview pilots included cognitive interview techniques to evaluate how respondents were interpreting specific questions. We then revised the interview guide to improve understandability of specific questions.

Initial site visit

Data collection began with an initial site visit that provided an opportunity for the first researcher to build rapport with participants (Patton, 2015). Typically, only special education teachers and focus students were present. During these visits, teachers provided a brief overview of students, including how they communicate (e.g., “eye gaze”) and their preferences (e.g., “loves hip-hop music”), right before introducing the researcher to students. The researcher spent 3 to 5 min building rapport with each student by showing interest in his or her known preferences. Next, the researcher showed and read a simple picture-based assent form that explained the study (e.g., “I want to see your tube feeding.”) and asked for student assent (“Can I watch?”). Visuals for “yes” and “no” were used to aid students in responding. Teachers aided in interpreting the responses of students who used nonsymbolic communication (e.g., affect). Students were told “it is okay to say no” before asking for their answer. All students assented to participate in the study. At the end of the site visit, future times for document reviews and observations were scheduled.

Document reviews

Document reviews focused on focus students’ current IEP, including the transition-planning component of the IEP (for students 16 years or older) and accompanying individualized health care plan. These documents were reviewed for (a) student demographics, (b) IEP goals and services related to health care, and (b) nursing health assessments, goals, interventions, and outcomes. The researcher reviewed documents at a time and location specified by the special education teacher at each school site. All focus students had an IEP on file. No evidence of health-focused transition planning was found for the six students who were in high school and post–high school. Across cases, only one student was found to have an individualized health care plan on file.

Observations

Observations took place in the natural setting where focus students’ SHCPs routinely occurred in the school setting (i.e., special education classroom, school nurse’s office, and private accessible bathrooms). Three observations were conducted for each type of SHCP across different data collection days. Student assent was obtained immediately prior to each observation. A total of 33 observations were conducted, ranging in duration from 10 min to 2 hr, with a mean observation of 39 min. Ethnographic field notes were taken during observations on (a) concrete and sensory details (i.e., specific details so the scene can be visualized), (b) action (i.e., actions of the student and adult participants), (c) dialogue (i.e. dialogue between adult participants and the student), and (d) characterization (i.e., observable qualifiers that describe the demeanor of participants during the observation). The researcher also recorded reflections on her personal questions, reactions, and ideas specific to observations (Emerson et al., 2011).

After each observation, a brief conversation occurred with school personnel who oversaw the focus students’ SHCPs. These conversations focused on whether or not the school personnel perceived the SHCP for that day to reflect what typically occurs with respect to focus students’ behaviors. Sometimes school personnel shared additional anecdotal information on their own, such as worries about potential challenging behaviors or perceived insights into how students may benefit from involvement in their SHCPs. These conversations lasted 2 to 10 min. Handwritten notes were taken to summarize the conversation (Patton, 2015).

Interviews

After initial site visits, document reviews, and observations, the researcher conducted individual in-person semistructured interviews with parents and school personnel. Participants selected the time and location of the interviews to reduce the likelihood of participant reactivity, specifically, potential changes in behavior after hearing and responding to the interview questions. Interviews were audio recorded and ranged from 25 to 74 min in length, with a mean duration of 41.2 min. The interview guide comprised eight items that mainly addressed how students were involved based on the CEC DPHMD’s (2008) recommended types of involvement. To a lesser extent, items addressed background information and IEP team planning. Table 3 lists the interview questions.

Table 3.

Interview Questions.

1. What are the most important things I should know to understand your student’s [or child’s] health care needs at school?

2. How would you describe your student’s [or child’s] cooperation with his or her health care procedures at school?
a. What is being done to help him or her learn how to better cooperate?

3. What does your student [or child] understand about his or her health care procedures?
a. How does he or she show that he or she understands?
b. What is being done to help him or her understand better?

4. Does your student [or child] communicate to a caregiver what to do in any part of his or her health care procedures at school?
a. What does he or she communicate?
b. Has anything been done to teach him or her how to communicate to what to do in his or her health care procedures?

5. Does your student [or child] physically do one or more steps in his or her health care procedures at school?
a. What does he or she do?
b. Has anything been done to teach him or her how to physically do one or more steps in his or her health care procedures?

6. Does your student [or child] do their health care procedures at school by himself or herself?
a. How does he or she do their health care procedures at school by himself or herself?
b. Has anything been done to teach him or her how to do his or her health care procedures by himself or herself?

7. If I had been sitting with you in the last IEP meeting, what discussion would I have heard about plans for your student’s [or child’s] health care needs when he or she is an adult and finished with school?
a. What do you think about what was discussed?

8. What, if anything, would need to change to make it possible for you to involve your student [or child] more actively in his or her health care procedures at school?

Note. IEP = individualized education program.

Data Analysis

Field notes written during observations and data obtained from document reviews were typed up on the same day as data collection. Three trained graduate students transcribed interview audio files for all formal interviews. The first researcher checked all transcripts for accuracy against the original audio files. Qualitative data analysis software (MAXQDA) was used to facilitate organization and analysis of the data. All data for each case were analyzed separately, followed by a cross-case synthesis of all findings. Data were analyzed using solo coding (i.e., one researcher coded) and rigorous peer debriefing during each step in the data analysis procedures (Saldaña, 2013). Peer debriefing occurred with the second author and entailed (a) sharing raw data and analytic memos, (b) sharing analysis (e.g., codes), (c) critical feedback (e.g., alternative interpretations of the data), and (d) face-to-face intensive discussion and verbal consensus (e.g., reaching verbal consensus on interpretations). Peer debriefing occurred one or two times per case and three times for cross-case synthesis. Additionally, three external auditors critically examined and provided feedback on the data analysis procedures and findings (i.e., final themes; Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005; Saldaña, 2013).

Case analysis

Procedures for individual case analysis followed an inductive approach and occurred in the following order: (1) identification of categories, (2) initial coding, (3) focused coding, (4) development of themes, and (5) testing and confirming themes through visual analysis using matrix displays (Miles, Huberman, & Saldaña, 2014; Saldaña, 2013). Case analysis focused on developing an in-depth understanding of individual cases through content analysis, using data reduction strategies to discern core meanings inherent in the data (Patton, 2015). We used a master codebook to ensure consistent application of categories and codes across the data and updated the master codebook as categories and codes were created, revised, or deleted (Saldaña, 2013).

Categories and initial codes

The researchers conducted iterative back-and-forth readings of the data to identify categories and initial codes (i.e., subcategories) based on patterns discernable in the data (Miles et al., 2014; Saldaña, 2013). We identified categories using a holistic coding approach. This involved coding large segments of data (i.e., whole page) to identify broad patterns in the data. An example category identified was involvement pathways, defined as supports that promote student involvement. Next, we identified initial codes using a descriptive approach. Smaller segments of data were coded (i.e., phrase, sentence, or paragraph) for units of meaningful data or a complete thought or topic (Miles et al., 2014; Saldaña, 2013). Two example initial codes under the category involvement pathways were narration (narrating what was happening in a procedure as it occurred) and environmental arrangement (intentionally placing supplies and so on in the student’s reach). We then evaluated, challenged, and discussed categories and initial codes through peer debriefing. Our discussion focused on whether the categories and initial codes were a good fit for the data. We revised categories and initial codes based on verbal consensus.

Focused codes

The next stage of analysis, focused coding, was undertaken to reduce the data further (Miles et al., 2014; Saldaña, 2013). We identified focus codes by reviewing all initial codes across data sources in an individual case. Initial codes that reoccurred frequently in the data or were otherwise illuminative (i.e., answered this investigation’s research question) were raised to focus codes (i.e., coded in a different color in MAXQDA). Analytic memos were written to confirm or disconfirm the saliency of a focused code. For example, through analytic memoing, it was found that the initial code narration was briefly mentioned by one participant as something that “should be done.” This initial code was not triangulated across other data sources; therefore, it was not raised as a focus code. In contrast, the initial code environmental arrangement was raised to a focus code because analytic memoing showed it frequently occurred in the data and across data sources and clearly answered the research question. Focused codes remained grouped in the same categories previously associated with the data. Because focused coding further reduced the data, it was necessary to reexamine and revise these categories. For example, if focused coding resulted in only one code under a given category, we combined the category into a related category.

Themes

We identified themes by examining focused codes in a stand-alone category (e.g., social interactions) or in two related categories (e.g., noninvolvement and noninvolvement pathways). Resulting themes were descriptive phrases that explained how the focused codes worked together to answer this investigation’s research question (Saldaña, 2013). For example, focused codes in the category social interactions resulted in the theme interacting with adults. Analyzing focused codes for themes, instead of the entire initial coding schema, ensured that all themes were relevant and answered the research question.

Categories, focused codes, and themes were submitted to peer debriefing procedures and subsequently refined. In order to test, challenge, and confirm themes, we created a visual matrix to critically examine the data at a glance. Following discussion, we finalized themes based on verbal consensus. Visual matrices for individual cases were updated and then compiled into a single matrix as a preparatory stage for cross-case synthesis (Miles et al., 2014; Saldaña, 2013).

Cross-case synthesis

Cross-case synthesis focused on (a) visual analysis (using the cross-case matrix compiled from individual case analyses) to compare and contrast findings across cases and (b) synthesis of themes across cases (Stake, 2006). Analytic memos were recorded on the similarity and dissimilarity of themes across cases as well as phenomena unique to a given case during visual analysis (i.e., not shared across other cases; Miles et al., 2014). We then collapsed and renamed the themes. All original focus codes associated with a theme were retained in the cross-case matrix to highlight similarities and differences across cases. The cross-case matrix, analytic memos, and preliminary cross-case themes were submitted to peer debriefing procedures. During peer debriefing, existing assertions were challenged and alternative explanations for patterns across cases were proposed, resulting in further comparative analysis and cross-case synthesis. Following multiple iterations, we finalized themes based on verbal consensus.

Trustworthiness

The researchers took multiple measures to promote the credibility and trustworthiness of findings to ensure that assertions were grounded in the data and accurately represented the experiences and perspectives of participants. We used member checking (i.e., respondent validation) to confirm the credibility of observation and interview data collected and to elicit participant feedback on the researcher’s preliminary interpretations of the data (Brantlinger et al., 2005). We triangulated data to verify that assertions were consistent across different sources (i.e., participants), types of data (e.g., observations and interviews), and investigators (i.e., different investigators discerned the same patterns inherent in the data; Patton, 2015). We also actively pursued disagreement among researchers and discrepant evidence as opportunities to challenge initial assertions and confirm or disconfirm alternate interpretations of the data and subsequent claims (Stake, 2006).

Researcher reflexivity and the use of rich and detailed description to promote transferability also promoted the trustworthiness of findings. The first researcher engaged in reflexivity in each stage of the research process, working to construct authentic descriptions and understandings grounded in the data (Brantlinger et al., 2005; Patton, 2015). She documented her reflections in field notes and analytic memos and included personal reactions, thoughts, feelings, and insights during data collection and analysis (Emerson et al., 2011; Saldaña, 2013). A total of 416 analytic memos were recorded throughout the duration of this investigation. Finally, to promote transferability (i.e., naturalistic generalization) of findings, we provide readers sufficient detail and depth to decide for themselves the application of findings to their unique circumstances (Brantlinger et al., 2005; Patton, 2015).

Findings

Four themes emerged from analysis of the data collected from observations (i.e., field notes), interviews, and document reviews that answered the research question, How are secondary-age students with severe disabilities involved in their SHCPs at school? These were (a) partially participating, (b) interacting with adults, (c) engaging in risky behaviors, and (d) passively participating. High school and post–high school students tended to be more involved in their SHCPs than middle school students. Additionally, students who had multiple concomitant disabilities that were severe in nature (e.g., cortical vision impairment, limited mobility) or behavior challenges were least likely to participate in their SHCPs at school. How or if students were involved in their SHCPs also depended on the actions taken, or not taken, by school personnel to provide students opportunities and supports (e.g., instruction, adaptations, modifications). Note that cases are named after focus students’ pseudonyms in this section.

Partially Participating

Partial participation was the primary way students were involved in their SHCPs at school. In five cases, students partially participated in one or more of the following ways: (a) carrying out steps in their SHCPs, (b) making choices in their SHCPs, and (c) reporting relevant health concerns during the SHCPs. Levels of student involvement in SHCPs varied and were associated with prior skill acquisition at home, formal or informal goals, and instruction.

Students partially participated in preparatory and clean-up steps in their SHCPs by gathering supplies (e.g., feeding tube, catheter, syringe), disposing of used supplies, and returning reusable or extra supplies to a designated area (Eva, Mae, Nia, and Xan). Students also partially participated in steps that were central to administering their SHCPs. Examples were lifting clothing to connect and disconnect to their feeding extension tube (Eva and Lyn) and attempting to insert a catheter (Nia). To a lesser extent, students partially participated in their SHCPs by making choices and reporting relevant health issues. Eva chose where she wanted to sit in the classroom during her tube feeding, and Xan chose his insulin injection site (e.g., left or right arm, tummy). Students who exhibited the highest levels of partial participation in their SHCPs first learned skills at home and then generalized those skills to the school setting (Mae and Xan). For example, Xan’s parent shared, “I taught Xan how to use his [blood glucose] meter and to stock his [diabetes management] kit.”

Goals addressing student involvement in SHCPs appeared to support the likelihood of students partially participating in their SHCPs at school. In two cases, goals were written as either a formal IEP objective (Eva; “gather supplies, lift shirt, clean-up”) or identified in the present levels of performance section in the IEP (Nia; “working with the school nurse to learn how to self-catheterize”). In three cases, goals were informal and not documented in the IEP. Informal goals were identified by school nurses (Lyn and Xan) or the special education teacher and paraprofessional (Mae) and were framed as desired student learning outcomes. Examples of informal goals were “to understand the importance of and demonstrate the use of the clean technique to self-administer a tube feeding” (Mae) and to “make low-carbohydrate food choices” (Xan). Both formal and informal goals were addressed through instruction; however, variation existed concerning school personnel’s follow-through with providing instruction.

Goals addressing student involvement in SHCPs appeared to support the likelihood of students partially participating in their SHCPs at school.

Types of instruction provided to students were visual prompting (Mae), verbal prompting (Eva, Lyn, Mae, Nia, and Xan), verbal prompting paired with gestural prompting (Eva), and verbal prompting paired with physical assistance (Eva and Nia). Steps in students’ SHCPs targeted by instruction did not appear to follow a forward or backward task analysis (except for Mae). Instead, instruction generally focused on discrete steps in the SHCP reported as “safe” and “feasible” by school personnel to teach students. Adaptations to the environment were made for Eva, Mae, and Nia, such as accessible shelving for gathering supplies (Eva) and a bathroom transfer bar (Nia). All students received verbal praise for correct responses.

Two students inconsistently received instruction (Eva and Lyn). In more than 50% of trials identified in goals, school personnel did the step in the SHCP for the student without the student’s involvement. This occurred when the school nurse and the paraprofessional appeared distracted while engaging in personal conversation with other school personnel (Eva) and because of behavioral concerns (Lyn). Lyn’s school nurse indicated that she did not want to “trigger” the student to scream or hit as the reason for her inconsistent follow-through. The informal nature of Lyn’s goal likely resulted in no coordinated IEP team supports to address behaviors.

Interacting With Adults

Across five cases, SHCPs were observed to be a time for social interaction between focus students and school personnel who oversaw and implemented students’ procedures (Eva, Lyn, Mae, Nia, and Xan). Most students and school personnel interacted with each other on a mixture of topics related and unrelated to SHCPs through verbal and nonverbal communication (e.g., affect, eye gaze, vocalizations). This finding may not be surprising given that school personnel must be in close proximity to students to deliver SHCPs. At times, these interactions appeared to promote students’ involvement in their SHCPs. However, sometimes social interactions were the primary focus during students’ SHCPs. In these cases, school personnel may have valued socializing with students over their partial participation or were otherwise unsure how to support the latter. Notably, augmentative and alternative communication (AAC) devices were not available during SHCPs for documented AAC users, and social interactions between students and peers did not occur across all cases.

Interactions around steps in the SHCP appeared to occur naturally between students and school personnel (Eva, Mae, and Xan). For example, Eva copied the school nurse shaking the cans of food for her tube feeding by shaking her body while smiling at the school nurse. The school nurse responded, “Are you shaking, too? Come on, shake, shake, shake!” and they both laughed. Interestingly, the school nurse did not give Eva a can of food to shake even though she had the motor skills for partial participation in this step. In another example, Nia was reported by school personnel and parents to be “uncomfortable with her body” and “reluctant” to learn how to self-catheterize. The school nurse was observed to make jokes with the student that appeared to lessen her anxiety. Specifically, the student laughed and then appeared more comfortable to attempt to self-insert the catheter. These social interactions appeared to be an informal instructional support.

Focus students and school personnel also had social interactions unrelated to SHCPs, but these varied in frequency and duration across cases. Students with verbal conversational skills chatted with school personnel throughout the procedure (Lyn, Nia, and Xan). Topics of conversation centered on students’ interests, such as pets, shopping, sports, and family. Nia and Xan were more likely to engage in conversation with school personnel unrelated to their SHCPs while simultaneously partially participating in their care. In contrast, social conversation appeared to be the primary focus during Lyn’s SHCP. Lyn’s special education teacher reported, “When I have observed it’s been more just chitchat about her day. And the feeding is just something that’s being done to her, and there is not a whole lot of explanation why.”

Eva and Mae communicated nonverbally using gestures, affect, and vocalizations. They were not observed to have access to AAC during their SHCPs, even though AAC was documented in their IEPs. Social interactions between students and school personnel in these cases tended to be short in duration and less frequent, occurring at the beginning and end of the SHCP. Across all cases, peers without disabilities were not present prior to, during, or immediately after the SHCP; thus, social interactions between students and peers with or without disabilities were not observed.

Engaging in Risky Behaviors

Some students were reported and observed to exhibit behaviors that posed health risks to themselves during their SHCPs (Lyn, Mae, Tye, and Xan). All school personnel conveyed serious concerns about Mae’s understanding of hygiene and ability to adhere to a clean technique in her SHCP. Observations of the student confirmed these concerns. Although school personnel provided instructional supports that included a photo task analysis of the SHCP and verbal prompts, supervision was intermittent (i.e., periodically walking up to check on the student). Mae repeatedly touched her mouth and then the feeding tube and supplies without sanitizing her hands. A major concern was potentially spreading bacteria from dental abscesses. School personnel reported taking multiple measures to address Mae’s unmet dental needs with the parent. The parent reported that she was in the process of making a dental appointment but was struggling financially and also had no transportation to take her daughter to the dentist. Although instructional supports were in place to prompt handwashing at the start of the procedure (i.e., visual cue), there was no photo prompt to remind the student not to touch her mouth when handling her feeding supplies.

One student had stereotypic behaviors. Xan was observed to have a discrete interest in numbers. When the nurse shared information about his carbohydrate count while calculating his insulin dosage, the student would begin calling out different numbers. For example, when told a lunch item had 16 carbs, he responded, “Sixteen. Sixteen is my favorite number! Do you know what comes after 16? Seventeen, 18, 19 . . . .” The school nurse’s office was always busy, and despite her attention to detail, the student’s behaviors appeared to create a challenging situation at times, as evidenced by her exasperatedly stating, “There you go again, buddy, with the numbers. You are just trying to throw me off.” Additionally, although Xan independently tested and reported his blood glucose levels by showing the meter, the school nurse reported that she had to verify the date and time carefully because “he wants praise for a lower reading and will sometimes show me a lower blood sugar number from the day before.”

Last, school personnel expressed concerns regarding Lyn’s and Tye’s behavior challenges and the potential for these students to pull out their feeding tube during a behavioral episode. Tye’s parent echoed this concern sharing that her son had pulled his feeding tube out at home on four occasions, necessitating a hospital visit each time. Tye frequently swayed suddenly and quickly during his SHCP in the opposite direction of the classroom nurse, who would have to follow his movements to avoid tension on the extension feeding tubing and tube button. School personnel reported using “distraction techniques,” specifically, giving the student a squishy ball to keep his hand busy and prevent him from pulling on his feeding tubing. However, Tye was observed to have something to hold in his hands in only one out of three observations. Across all cases where students were observed and reported to exhibit a health risk to themselves during their SHCP, no IEP goal or behavioral interventions (i.e., behavior support plan) were documented.

Passively Participating

In four cases, students were almost always observed to be a passive recipient of their SHCPs. Specifically, school personnel implemented the SHCP without eliciting student involvement or responding to student attempts to participate in their procedures. In cases where students received care without opportunities to be involved in their SHCPs, students had multiple concomitant disabilities that were severe in nature (e.g., cortical vision impairment, limited mobility; Iris, Rae, and Wes) or had severe behavior challenges (Tye).

Across these cases, school personnel interacted with students in a caretaking manner by patting and stroking students’ heads, backs, and extremities. They also fixed students’ hair or used childish nicknames, such as “monster.” Although it is reasonable to assume that some tactile interactions were in response to students’ vision and hearing impairments, school personnel did not use any tactile communication specific to SHCPs (e.g., tactile schedule). In general, school personnel reported that the purpose of students’ SHCPs was to ensure that they were comfortable and taken care of medically at school.

Low expectations on behalf of school personnel also appeared to be an issue. Students vocalized and orientated toward school personnel and relevant materials during key steps in SHCPs. School personnel did not appear to acknowledge these behaviors as showing awareness of their SHCPs. Specifically, they did not respond by providing students information about what was happening or otherwise facilitate their partial participation. Instead, they responded by patting them on the leg or back and by using abstract expressions, such as “Here we go” or “OK, buddy [or girly],” or said nothing at all.

Additionally, school personnel identified SHCPs as relaxation time for students. They made comments such as “Time to sleep” while providing students’ SHCPs. Wes’s special education teacher identified his SHCP as “scheduled relaxation time.” “The tube feeding is the time I know he’s comfortable, so I can go work with another student. So that is his downtime. They all have their different downtimes because they tire so easily.” Interestingly, this student’s tube feeding was administered as a slow drip via a pump over a duration of 2 hr.

A possible explanation for the prevalence of caretaking practices, low expectations, and viewing SHCPs as relaxation time was an apparent lack of shared knowledge across IEP team members with respect to students’ SHCPs. In some cases, parents reported that they did not know what happened during their child’s SHCPs at school (Iris, Rae, Tye, and Wes). School nurses were also infrequently involved in students’ SHCPs due to the use of a longtime 1:1 paraprofessional (16 years; Iris) and classroom nurses (Rae, Tye, and Wes).

Discussion

The purpose of this study was to understand how students with severe disabilities and complex health care needs are involved in their SHCPs at school. Five out of nine students in this study were found to engage in their SHCPs through partial participation. Although this is an encouraging finding, educational supports for these students often did not reflect recommended practices, thereby potentially constraining students’ overall involvement in their SHCPs and even posing safety concerns. The remaining four students, who presented with the most severe disabilities in this study’s sample, were not involved in their SHCPs. Rather, they were treated as passive recipients of their health care in age-inappropriate ways. No students were found to interact with peers immediately before, during, or right after SHCPs. These findings suggest a need for a more systematic approach to teaching self-care and having higher expectations for learners who have the most severe disabilities during SHCPs at school as well as fostering inclusion around or during SHCPs as appropriate.

Five out of nine students in this study were found to engage in their SHCPs through partial participation.

SHCPs are instructional opportunities for students to learn self-care skills. Partial participation is a way for students to learn these skills with assistance and supervision when independent self-care in their SHCPs is not possible or safe (CEC DPMHD, 2008; Heller et al., 2000; Lehr & Harayama, 2015; Ward & Ward, 2014). Partial participation in this study centered on carrying out steps in SHCPs, making choices, and communicating health concerns. Although not found in this study, SHCPs may also provide opportunities to embed instruction on existing IEP goals, such as domestic (e.g., handwashing), motor (e.g., grasping), communication (e.g., requesting), and behavior (self-regulation) goals.

SHCPs are instructional opportunities for students to learn self-care skills.

Although positive that several students were found to engage in their SHCPs through partial participation, the findings call to attention several concerns for all students in this study’s sample. Most notably, there was an absence of documented planning (except for one student) in the form of IEP goals and specialized health care, instructional, and behavioral plans. Supports were inconsistently provided to students who partially participated (instruction and AAC), and for one of these students, there was an apparent lack of supervision. Another concerning finding was that students with the most severe disabilities were passive recipients of their SHCPs.

Partial participation is not simply choosing something for a student to do; rather, it is a coordinated and longitudinal approach that includes strategies such as assessment, systematic instruction, adaptations, and behavioral supports (Baumgart et al., 1982; Ferguson & Baumgart, 1991). IEP goals and individualized health care plans, and the processes for developing and implementing them, are essential for promoting students’ partial participation in their SHCPs (Heller et al., 2000). Thoughtful planning is necessary to identify ways to support independence to the maximum extent possible and appropriate for the individual; however, it may not be clear to school personnel how to accomplish this within the context of health care at school (Bargeron et al., 2014). School personnel also may not be well prepared to collaborate with each other to address the needs of students with SHCPs (Pufpaff, Mcintosh, Thomas, Elam, & Irwin, 2015). Although the potential for missed learning opportunities is concerning, not providing students behavioral supports when they exhibit potentially unsafe behaviors is especially problematic.

Across students who had behaviors that posed a safety risk in their SHCPs, no behavioral supports were evident. The chance of a procedural error or self-injury occurring was likely high and potentially serious. Self-care in SHCPs bears similarity to other commonly addressed personal care, home, and community living skills that can have serious implications for health and safety if not taught correctly. For example, addressing partial participation in food preparation skills should not occur without systematic planning, instruction, adaptations, and behavioral supports to ensure students are not at risk (e.g., foodborne illness) or in other physical danger should a behavioral manifestation occur (Brown et al., 2016). For some students, it may never be feasible or safe to teach certain steps, but with individualized supports in place, students can participate to the maximum extent possible and appropriate (Ferguson & Baumgart, 1991). The emphasis on safety when addressing more common self-care skills is of equal if not greater importance during SHCPs. Similar to participating in other self-care skills, children and youth may benefit in important ways that include improved autonomy and personal management skills, which have direct implications for health and safety (Bosner & Belfiore, 2001; Hannigan, 1979; Neef et al., 1989; Tarnowski & Drabman, 1987).

Although partial participation is best suited for promoting the active participation of learners who have the most severe disabilities in activities (Baumgart et al., 1982), participants in this study who met this description were not involved in their SHCPs. Students with multiple concomitant severe disabilities or severe behavior challenges were treated as passive recipients of their SHCPs by school personnel in age-inappropriate ways. Although school personnel appeared to care sincerely about these students, they also seemed to view them as helpless and in need of custodial caretaking. It is plausible that the perceived vulnerability of students with the most severe disabilities and complex health care needs may result in professionals and parents emphasizing protective care at the expense of having high expectations for this population (see Zijlstra & Vlaskamp, 2005). This suggests that a medical model (i.e., a deficit-based approach that views students as patients; Reger, 1972) may informally persist for students who have the most severe disabilities and complex health care needs. Another or a co-occurring explanation may be that school personnel simply do not know how to support partial participation in SHCPs for this subset of students.

It is also noteworthy that social interactions during SHCPs occurred exclusively with school personnel. The majority of students had tube feedings, which is an alternate form of “mealtime” (Lehr & Harayama, 2015). During the school day, mealtime is a natural time to learn self-care and social skills alongside peers without disabilities (Brown et al., 2016). Mealtime may be especially important at the secondary level, when there are fewer unstructured opportunities for peer interactions during the school day (i.e., no recess). Missing mealtime at school may further hinder social inclusion for students with SHCPs. Like other common self-care routines in school (e.g., changing clothes in the locker room, combing hair in the bathroom), SHCPs may offer opportunities to promote social interactions with peers without disabilities. An IEP team decision on ways to foster peer interaction before and after (e.g., walking to and from the nurse’s office) and during SHCPs may help to ensure students do not miss out on natural opportunities to interact socially with their peers. Decisions about addressing inclusion in the context of SHCPs should be individually determined based on safety and privacy considerations and student preference.

Limitations

The study sample included a disproportionately large number of focus students with tube feedings. Although four other types of SHCPs (i.e., blood glucose testing, clean intermittent catheterizations, insulin injections, nebulizer treatments) were present among focus students, the findings may not be representative of students with other types of SHCPs (e.g., tracheostomy care) in schools. School personnel who shared the same focus students completed one interview for two students at once, which may have resulted in similar findings for those students. Additionally, in order to collect data consistent with multiple-case-study methods, overall numbers of participants were relatively small. Given the method of inquiry and low incidence and heterogeneous nature of youth with severe disabilities and SHCPs, findings may be unique to the particulars of this study; therefore, readers should determine how they will use the information based on their individual contexts and experiences (i.e., naturalistic generalization [transferability] of findings; Stake, 2006).

Implications for Research

This study provides an initial understanding of how secondary-age students with severe disabilities are involved in their SHCPs at school. Future research should examine a more comprehensive understanding of how schools address self-care in SHCPs with secondary-age youth with severe disabilities and the extent to which students are maximally participating in their SHCPs. The discrepancy between recommended and actual practice (teaching self-care vs. caretaking) found in this study also suggests a need to understand better why this gap exists. Examining the perspectives of parents, school personnel, and students may provide insight into various factors (e.g., parents’ goals and priorities for their children, school personnel training, resources) that explain this phenomenon.

Although the available research confirms that children and youth with disabilities can learn self-care skills, there is a need to demonstrate whether existing approaches are appropriate for learners with severe disabilities and to develop new interventions that are appropriate for school settings. Studies that identify methods to teach partial participation in SHCPs are especially important given that few students with severe disabilities may achieve independence in their care without ongoing assistance and supervision.

Implications for Practice

The findings offer some key implications for practice. IEP teams should have high expectations for learner outcomes in health care and consider SHCP as a natural opportunity in the school day to teach self-care skills that will promote students’ safety, independence, and transition to adulthood. School practitioners in collaboration with families are in an important position to transform passive caregiving during SHCPs into meaningful learning opportunities through educational planning (i.e., development of IEP goals) and use of systematic instruction. Special education teachers, as experts in instructional strategies, should work closely with nurses to ensure that SHCPs are regarded as instructional opportunities in lieu of a medical approach. The findings also point to a need for effective IEP teaming approaches to respond to students’ health-related educational needs from a strength-based model. The latter should address health care transition planning for youth who are nearing adulthood and for whom self-care in SHCPs is of increasing importance.

The findings also point to a need for effective IEP teaming approaches to respond to students’ health-related educational needs from a strength-based model.

Footnotes

ORCID iD

Stacy Dymond

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