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Pediatric-Onset Rehabilitation

School

Every child has the right to learn. However, many children with SCI are not receiving equal education opportunities due to their disability status and lack of accessibility within the school system. Inadequate access to quality education has a long-lasting and pervasive impact on children’s social development, as well as their abilities to lead a fulfilling life and contribute to their community in adulthood (UNICEF 2021).

To return to school is a primary rehabilitation goal for children and adolescents who have sustained an SCI and is key to a smooth transition into adulthood; High educational attainment has been shown to predict positive employment outcomes later in life in those with SCI (Anderson & Vogel 2002; Hwang et al. 2014b). When returning to school after acquiring an SCI, children may experience various challenges related to physical accessibility, psychological adjustment, and social participation. For example, they may need to cope with changes in their self-image and role in school as a result of the changes in their physical abilities; in addition, inadequate awareness and knowledge about SCI among teachers and peers may hinder their full participation in school activities, such as sports and school trips (Knight, 2008; Mulcahey 1992). This section presents an overview of the existing evidence on school re-entry in children with SCI.

Author, Year

Country

Study Design

Sample Size

Population

Intervention

Outcome Measure

Results

(Harder et al., 2013)

USA

Observational

N=24

Population: Age at interview: 11.5±3.4 (5-18) yr; Age at injury: 9.7±4.8 (1-17) yr; Gender: males=9, females=15; Injury etiology: Transverse Myelitis; Level of injury: cervical (N=13); Ambulation: normal=46%, abnormal but ambulated independently=79%, bilateral support (i.e., crutches) =29%, wheelchair-bound=8.3%.

Intervention: None. Neuropsychological evaluation, patient and caregiver surveys.

Outcome Measures: Academic performance at school.

1.         Parents reported that 33% of subjects were below average or failing performance in one of four academic domains.

(Massagli et al., 1996)

USA

Observational

N=53

Population: Age at Injury: 9.2 (0-17) yr; Gender: males=33, females=20; Injury etiology: SCI=43, Transverse Myelitis=7, Skeletal Dysplasia=1, Other=2; Time since injury: 9.4 (0-26) yr; Level and severity of injury: complete paraplegia=17, incomplete paraplegia=8, complete tetraplegia=17, incomplete tetraplegia=11.

Intervention: None. Survey.

Outcome Measures: School

placement, cumulative and most recent term grade point average (GPA), use of services (e.g., physical or occupational therapy, an aide, or nurse) and assistive technology, highest level of education achieved by each parent. Self-ratings on performance in discussions, group activities, homework, test completion, independent study, behavior; teacher reports on school program,

type of classroom setting, changes in class requirements for the student, use of transition services, and use of assistive technology in the classroom, student performance; attendance, grades, transition planning.

Primary School Subjects (n=12)

1.         All subjects were enrolled in school full-time; 9 were qualified for special education services and they received special services that included an aide (58%), a full-time private RN (8%), and physical or occupational therapy (75%).

2.        Almost all (n=11) participated in physical education and all participated in recess and field trips.

3.        The most common modifications reported by the students and teachers were allowance of extra time to complete in-class work (33%), and a change in location (17%) due to lack of access.

4.        The median values for self-ratings by students ranged from 4 to 6, and by teachers of the students from 4.5 to 5.5 (not significantly different).

 

Secondary School Subjects (N=19)

5.        Two subjects attended school part-time and the rest went full-time.

6.        Six students were qualified for special education services; special services provided to secondary students included an aide (32%), a full-time private RN (10%), physical or occupational therapy (16%), and classes related to vocational preparation (26%).

7.        Only 9 participated in physical education, and 6 reported that they did not participate in class field trips.

8.        Modifications provided for these students included extra time to complete in class work (42%), location change (26%), and alternate assignments (21%).

9.        Eighty-five percent of secondary students, including both who were ventilator-dependent, planned to attend college.

10.      Mean grade point average (GPA) for these 19 students was 3.05.

11.       Students had a mean of 23 absences per school year, but school absences did not appear to influence the previous term GPA.

12.      Class ranks were available for 11 students for which 45% were in the top quartile and 18% in each of the other 3 quartiles.

13.      Both students and teachers rated all performance measures a median of 5, (no significant difference).

 

Post-Secondary Subjects (N=22)

14.      Only 2 (9%) of the 22 postsecondary subjects did not complete high school; 50% were currently in college, 32% had completed college, and 18% had never attended college.

15.      Compared to secondary students, these students reported similar modifications in their school work but with greater frequencies: extra time to complete work and tests (68%), a location change (50%), and alternate assignments (32%).

16.      Those in college anticipated working in such jobs as pharmacist, lawyer (n = 2), engineer (n = 2), teacher, personnel manager, accountant, and social worker.

17.      Two students were ventilator-dependent; one anticipated a job in psychological counseling and the other was uncertain.

18.      Actual jobs held by those who had completed or never attended college included engineer, photographer, insurance agent, computer operator, ranch foreman, teacher, homemaker (n=2), and rehabilitation counselor (subject who was ventilator-dependent).

19.      Five postsecondary subjects lived with family, 1 lived in a nursing home, 4 lived away from family with an aide, and the rest lived independently.

20.     The level of SCI was not related to whether or not a working age subject had ever been employed in a minimum wage job: 11 of 20 with paraplegia versus 6 of 17 with tetraplegia bad ever been employed (p=0.23).

(Graham et al., 1991)

USA

Observational

N=13

Population: Age at injury: 12-19 yr; Gender: males=12, females=1; Level of injury: tetraplegia=6, paraplegia=7.

Intervention: None. Survey and Interview.

Outcome Measures: personal

care needs, asking for and receiving help in school, perceived

attitudes of classmates and teachers, availability of counseling

services, and participation in extracurricular activities. Responses to the following questions:

1) How do you feel other students perceive you and your disability?

2) Do you have problems with other students because of your disability?

3) How did your parents react regarding your return to school?

4) Do you participate in school activities?”

Of total sample (N=44), 11 dropped out of school before their injury; 5 refused to return to school after their injury; 5 already had graduated from high school; and 2 had educational services provided at home; 21 patients returned to school of which data is presented here for 13 who agreed to participate.

1.         No student felt that able-bodied students had poor attitudes or unfriendly toward them.

2.        Male students enjoyed the positive attention from others, particularly from female peers.

3.        Those reluctant to ask for help excluded themselves from activities (to appear independent); those with paraplegia often stated they did not need help in school.

4.        Parents wanted students to go to school and accepted no excuses except actual physical illnesses.

5.        All schools attended were (mostly) wheelchair accessible; one had to be assisted up a steep ramp, one student blamed the school for not providing a wheelchair accessible location and he dropped out of school in last term.

6.        Educational and vocational counseling was very limited.

7.        Three students with tetraplegia had a note-taker assigned; tape recorders were also used to take notes.

8.        None of the students were required to attend physical education class; leisure activities involving able-bodied and disabled were lacking.

9.        Reasons for non-participation in other extra-curricular activities were a) the long school day, b) the rigid transportation schedule, c) homework and personal care schedules, and d) fear of crowds and violence.

10.      Males with paraplegia had no problems with personal care.

11.       Bladder and bowel accidents were not a major concern; only three students reported accidents which were a source embarrassment.

12.      While few problems were expressed initially, follow-up reports revealed a dropout rate for this group of 38% (5 of the 13).

13.      The five students who dropped out of regular day schools all did so in the 11th grade and had been shooting victims.

14.      Four of the six students who graduated from regular high school programs also enrolled in colleges.

15.      One student died in the senior high school term from a subsequent gunshot wound.

16.      The youngest student, who was 12 yr old when injured, still is attending school.

Discussion

Three studies were identified from our literature search, all of which were observational studies and originated from the USA. Topics examined include school performance, recommendations for the school re-entry process, laws and legislations, services by physical or occupational therapists, assistive technology, and children’s subjective experiences with the re-entry process.

Massagli (1996) conducted the largest study to date on educational achievement and vocational participation in 53 children and adolescents post-SCI. primary school, secondary student, and postsecondary students who acquired SCI before age 18 and their teachers were surveyed. Content analysis of school records was also performed. Overall, students with SCI demonstrated adequate academic performance and school participation. This was reflected in students’ and teachers’ ratings on the students’ performance and participation, as well as the high post-secondary school enrollment rate (82%) among the high school graduates. Harder and colleagues (2013) study, in contrast, indicated that many students with SCI may experience challenges in the academic aspect of school life. Specifically, in their study, 33% of parents of children and adolescents with SCI indicated that their child experienced school problems, defined as below average or failing performance in one of four academic domains. However, it should be noted that these caregiver reports were based on a non-standardized and non-validated school history questionnaire on academic functioning. Therefore, this finding should be interpreted with caution.

Challenges related to school participation encountered by children with SCI were noted in two of the three studies (Graham et al. 1991; Massagli et al. 1996). For participants in Massagli and colleagues (1996) study, especially those who were attending secondary school, participation in physical education was limited. Likewise, Graham and colleagues (1991) study revealed a lack of availability of accessible leisure activities for adolescents with SCI. Interestingly, although peers’ negative attitudes towards people with disabilities have frequently been identified as barriers to school participation in the literature, no participants in Graham and colleagues (1991) study reported their able-bodied peers having poor attitudes or being unfriendly towards them.

Not surprisingly, the services that children with SCI receive and require in the school settings depend on their age and developmental stages. In Massagli and colleagues (1996) study, it was found that primary school students with SCI received more support from physical and occupational therapy services than secondary school students, whereas secondary and postsecondary students required more modifications to the curriculum and daily activities, possibly due to increased complexity of school work and less direct support received. As noted by Massagli et al. (1996), adolescents with SCI may benefit from transition planning services, such as employment counseling, within the school setting. However, such services for this population were found to be inadequate for study participants (Graham et al. 1991; Massagli et al. 1996)

As Mulcahey (1992) pointed out, successful rehabilitation efforts entail not only improvements in functional independence but also successful community reintegration that allows the individuals to resume meaningful lifestyles. Given the significance of school in children’s everyday life, this calls for more research, especially intervention studies, on the topic of return to school in the pediatric SCI population. Furthermore, in order to improve the quality of research in this field, multicentre studies are needed to increase the sample size, as SCI in children and adolescents is rare in many countries.

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