Chronic Illness

Chronic illness is occasionally referred to using different terminology (e.g., special healthcare needs), and defining the concept is complex. Consistent with the literature in the medical field, the current paper defines chronic illness as any long-term or permanent medical condition that impacts everyday life (see review in Lubkin & Larsen, 2006; Thies, 1999). The complications associated with chronic illnesses accumulate and interact in a negative cycle that exacerbates both physical and socioemotional health (Kassim, Gladanci, Pruthi, & DeBaun, 2015). For example, both the symptoms of the disease and the treatments may fatigue the individual, which may result in further diminished attention, memory, and learning (Shaw & McCabe, 2008; Thies, 1999). Hospital visits, pain crises, and medication disrupt schooling, relationships, family dynamics, and financial security (DiNapoli & Murphy, 2002; Smith, Patterson, Szabo, Tarazi, & Barakat, 2013). These and similar factors, in turn, increase stress (American Academy of Pediatrics [AAP] American Public Health Association, & National Resource Center for Health and Safety in Child Care and Early Education, 2011; Tarnowski & Brown, 2000), which increases the risk for anxiety, depression, low self-esteem (Shaw & McCabe, 2008; Wodka & Barakat, 2007), and worsened physical problems both for the individual and for his/her caregivers (AAP Committee on School Health, 2000). Thus, interventions are essential for mitigating physical and psychosocial difficulties.

Sickle Cell Disease

While all chronic illnesses have unique symptoms and stressors, SCD can serve as a model in research on children with chronic illness because it commonly co-occurs with a myriad of physical and psychological disabilities that characterize or are associated with other illnesses (Hassell, 2010). SCD is also important to study as it is the most common genetic disease worldwide (Centers for Disease Control and Prevention, 2017; Weatherall, Hofman, Rodgers, Ruffin, & Hrynkow, 2005). For example, it impacts about 10% of African Americans in the USA, and rates may increase as the proportion of African Americans in the population increases (Hugo, 2009; Sedrak & Kondamudi, 2019).

SCD is comprised of a group of genetic blood disorders in which blood or oxygen flow is blocked or stopped. Symptoms include severe pain, anemia, vision problems, jaundice, organ damage; in addition, 8–15% of children with SCD in the USA experience a stroke (Platt et al., 2016; Sedrak & Kondamudi, 2019). Strokes cause early death, increased risk for a second stroke, and lifelong problems in learning, executive functioning (i.e., attention, memory, impulsivity), language expression or understanding, neuro-motor skills (i.e., fine-motor tasks such as handwriting and gross-motor tasks such as balance and coordination), and overall cognitive development (de Montalembert & Wang, 2013; Ware & Helms, 2012). In sum, SCD has both acute and long-term effects on an individual’s physical, cognitive, and psychological well-being.

SCD-related physical symptoms may be managed by hospital visits and intensive medical care in the USA; however, that time in the hospital has consequences for academic achievement and daily functioning (AAP Committee on School Health, 2000). For example, the number of planned hospital visits for children with SCD in the USA ranges from twice per year to once every three weeks (Yawn et al., 2014). In addition, children with SCD have high rates of emergency room visits, hospital admissions, and sick days, all of which result in school absences and missed school instruction (Champaloux & Young, 2015).

Academic Barriers for Children With Chronic Illness

Improved medical care has increased the lifespan for individuals with chronic illness, in general, and children with SCD, specifically, but for the growing number of children living with these conditions who are in need of school accommodations, improvements in school training or resources are still lacking in the USA. The No Child Left Behind Act (No Child Left Behind [NCLB] Act of 2001, 2002) was one attempt made by the USA Department of Education to improve academic progress through increased federal involvement in the education system. NCLB required schools to demonstrate adequate yearly progress (AYP), or achievement of projected growth. Some metrics of AYP included student attendance and standardized testing scores. Unfortunately, however, the NCLB standards negatively reinforced school systems for retaining students with chronic illness, as these were more likely to have poor attendance and related low-test scores (Irwin & Elam, 2011). While NCLB expired, the replacement, Every Student Succeeds Act (ESSA), continues many NCLB goals, including annual standardized testing for third and eighth grades. Under ESSA, states have more authority and flexibility over their education goals and consequences for under-performance, but similar standards and metrics of school accountability remain in use, and, thus, similarly have a negative impact on students with chronic illness (ESSA, 2015).

The Individuals with Disabilities Education Act (IDEA) of 2004 and the Rehabilitation Act (1973) were other federal efforts to increase equal opportunity for students with disabilities in the USA. IDEA (2004) required schools to provide individualized educational programming (IEP) for children with achievement-interfering medical conditions. The Rehabilitation Act (1973) prohibited schools from discriminating on the basis of disability. Again, however, this legislation fails to account for the unique sequelae of chronic illness (Shaw & McCabe, 2008). In sum, although the primary goals of NCLB (2002), ESSA (2015), IDEA (2004), and the Rehabilitation Act (1973) were to ensure equal educational opportunity for all children in a safe and inviting environment, children with chronic illness continue to be disadvantaged.

The limitations of USA education for children with chronic illness are repeatedly shown in qualitative and quantitative studies. Past research reported that educators are often unaware of or misunderstand the needs of students with chronic illness (Knauer, Baker, Hebbeler, & Davis-Alldritt, 2015; Olson, Seidler, Goodman, Gaelic, & Nordgren, 2004; Sexson & Madan-Swain, 1995; Shiu, 2001). As a result, many American schools treat children with chronic illness like other children who are truant from school by retaining them or holding them responsible for independently learning material missed during their absences (Balfanz & Byrnes, 2012; Irwin & Elam, 2011). This approach fails to account for the decreased energy and concentration that accompany the diseases and treatments, lifestyle restrictions, and other accumulating problems related to SCD, specifically, and chronic illness, generally (Magrab, 1985; Miller & Wood, 1991). Furthermore, as a result of feeling inadequately prepared, American teachers have reported feeling burdened by the student (Olson et al., 2004), the accommodations (Shiu, 2001), and by the expectations that the child will accomplish less as a result of his or her illness (Irwin & Elam, 2011; Sexson & Madan-Swain, 1995).

As students age, the organizational demands increase. In American secondary schools, students have more teachers, classes, and work. Thus, they grow further disadvantaged from the previous years of missed schooling and from their continuing psychosocial challenges (Balfanz & Byrnes, 2012). Overall, most of the aforementioned American academic policies have been shown to leave families and children with SCD and other chronic illnesses feeling abandoned and burdensome (Irwin & Elam, 2011). These negative experiences then add to challenges, behavioral problems, and risk of academic failure (Jimerson, Pletcher, Graydon, Schourr, Nickerson, & Kundert, 2006; Shiu, 2001; Thies, 1999).

In addition to the structural barriers to learning and classroom participation for patients with chronic illness, children with SCD and other chronic illnesses also face interrelated, interfering cognitive, psychological, and other deficits (Eiser, 1990; Nelms, 1989; Olson, Johansen, Powers, & Pope, 1994). For example, for children with or without SCD, stroke-related impairments in executive functioning can make it difficult to pay attention and to complete tasks (de Montalembert & Wang, 2013; Schatz & Roberts, 2007; Ware & Helms, 2012), which may increase the risk of peer rejection (Jellinek, Bostic, & Schlozman, 2007; Mukherjee, Lightfoot, & Sloper, 2000). Receptive and expressive language difficulties that occur with many illnesses, including stroke, may also negatively impact both learning and relationships (de Montalembert & Wang, 2013; Ware & Helms, 2012). Further, many children are aware of their academic and social shortcomings and may feel isolated, hopeless, and/or burdensome. Such sentiments predict psychopathology (e.g., anxiety), difficulty transitioning from hospital to school, decreased motivation, and academic failure (Irwin & Elam, 2011; Madan-Swain, Fredrick, & Wallander, 1999; Pinquart & Shen, 2011).

Finally, all of the physical and psychosocial difficulties often leave American families ill-equipped to help their child. Thus, families of children with chronic medical and behavioral problems expend increased resources to address their child’s many medical and psychological needs (Kuhlthau, Hill, Yucel, & Perrin, 2005). Not surprisingly, many parents experience stress, burden, and interferences in employment and finances related to their offspring’s deficits and increased daily care (Magrab, 1985; Stabile & Allin, 2012). Parents may experience guilt related to having passed on genetic diseases, realizations that the child’s life cannot be normal, and difficulty managing unpredictable episodes of pain (Magrab, 1985). Isolation from community and school resources, as well as negative past experiences with schools, have also been found to deplete trust and involvement in the school system (Knauer et al., 2015). Overall, the myriad stressors parents face may leave many without the ability to provide academic tutoring, emotional support, or school coordination to bridge academic opportunity gaps (Blanchard, Gurka, & Blackman, 2006).

Academic Recommendations for Children With Chronic Illness

In recognition of the ongoing academic difficulties of children with chronic illness that are not addressed by NCLB (2002), ESSA (2015), IDEA (2004), or the Rehabilitation Act (1973), the American Academy of Pediatrics (AAP) made some recommendations for families, hospitals, and schools. For example, the AAP proposed that hospitals hire teachers to maintain a schooling routine during absences as well as collaboration with the school. Online schooling was also recommended to help with missed instruction (AAP Committee on School Health, 2000).

However, few academic interventions for children with chronic illness have been empirically studied or well defined. For example, the role of hospital teachers is not clearly defined, nor is it consistent across hospitals (Steinke, Elam, Irwin, Sexton, & McGraw, 2016). Most American programs are still focused on the hospital-to-school transition for children who were hospitalized for long periods of time, despite the fact that hospital stays are growing shorter (Shaw & McCabe, 2008). One randomized controlled trial analyzed the efficacy of a weekend workshop aimed at educating families on school accommodations for their child with SCD. However, the workshop was not found to improve academic outcomes compared to the control condition (Daniel et al., 2015).

AAP recommendations for collaborations and online schooling may help many families, but research is needed on the implementation and outcome of these strategies. First, online programs require motivation, independence, technical skills, access, self-discipline, time management, and self-esteem, all of which are likely to be challenges for children with chronic illness (Fernandez, Ferdig, Thompson, Schottke, & Black, 2016). Second, the feasibility and effectiveness of online programs for children with chronic illness require careful study because, compared to traditional schools, such programs are often shorter in duration, implemented by less qualified teachers (Irwin & Elam, 2011), unable to provide social development or community integration (AAP Committee on School Health, 2000; Gjengendal, Rostøen, Wahl, & Hanestad, 2003), and may pose economic and time burdens for parents (Macciomei & Ruben, 1989; North Carolina Department of Public Instruction. Exceptional Children’s Division, 2000). Finally, research is needed on best practices for and outcomes of the AAP recommendations for collaborations among schools, hospitals, and families in the USA (Irwin & Elam, 2011; Steinke et al., 2016). In particular, evidence-based practices are needed to help parents overcome the numerous personal and environmental barriers they face while trying to obtain school accommodations for their children (Bacon & Causton-Theoharis, 2013).

The Present Study

Given the gaps in the literature and the need for educational programs, the following case study aimed at developing and evaluating an academic intervention that may be useful for children with chronic illness. Maya, a young girl with SCD and a history of stroke from a low-socioeconomic-status family in the USA, is presented as a case example because the intervention was developed with her and because the constellation of difficulties associated with SCD may serve as a model for chronic illness. However, the intervention has also been successfully used with children with other chronic illnesses in the hospital, so recommendations for other illnesses are considered.

Our initial hypothesis was that a systemic intervention with the parent, student, hospital, and school would improve Maya’s academic performance. Specifically, we expected that frequent collaborative meetings among these stakeholders would improve parent and child advocacy and increase school and hospital knowledge of respective systems, thereby leading to improved academic performance. We hypothesized that individual and group meetings with Maya’s mother would give her the self-efficacy, knowledge, and skills to advocate for and help her daughter. We expected that creating an environment that made Maya, her family, and her school feel safe, welcomed, respected, and engaged would bridge the learning and social gaps that resulted from her chronic illness symptoms and school absences.

Methodological Framework

The study employed a quality improvement process that is typically implemented in health care delivery systems (Varkey, Reller, & Resar, 2007). The Plan-Do-Study-Act (PDSA) cycle entails effecting change by first planning an intervention, implementing the plan, studying the results, and acting on what is learned. The cycle of monitoring and modifying the system continues until the desired outcome is achieved.

Consistent with the quality improvement approach, goals were set (i.e., Maya will complete all requirements for promotion to the next grade). Next, stakeholders were determined: the student, caregivers, school personnel (teachers, case managers, guidance counselors), hospital personnel (teacher, medical providers, psychologist, social workers, nurses). Measures of goal achievement were selected (i.e., grades, state assessments, school attendance, parental attendance at school meetings, student preparedness for instruction, qualitative reports of academic and psychosocial progress). Finally, the plan was implemented in a real-world setting.

The quality improvement approach was first used with Maya, as the beginning of a larger effort to develop an academic intervention for children with chronic illness. We present Maya as a single case example because case study designs are rigorous ways to conduct repeated measures assessments with high internal validity. Thus, we believe this format best demonstrates the direct impact of the intervention on outcomes, controlling for confounding variables (Lobo, Moeyaert, Cunha, & Babik, 2017).

Context

Maya was an 11-year-old African-American female entering the fifth grade at the start of the academic intervention (August 2015). She was diagnosed with sickle cell anemia and asthma at birth. Prior to the current intervention, she had multiple hospitalizations and emergency room visits for SCD and other related complaints (e.g., urinary tract infection, seizure). In preschool (October 2009), she presented with an acute cerebrovascular accident, which damaged the left and frontal lobes of her brain. In a third-grade neurocognitive exam, the neuropsychologist on our hospital team reported that Maya demonstrated normal functioning in intelligence, memory, visual learning and understanding, math, and socioemotional functioning. However, she exhibited abnormalities in adaptive functioning, attention/executive functioning, list learning, language, sensorimotor skills, reading, and written language. These neurocognitive issues placed her at risk for academic difficulties.

Prior to and during the academic intervention, Maya attended a public school in an economically disadvantaged, urban community. Beginning in second grade, Maya was classified as a student with a disability under IDEA. Thus, her school had to create an individualized education program (IEP) to facilitate her acquisition of government standards and achievement of personal goals (IDEA, 2004). Specifically, Maya’s IEP was supposed to provide her with extra time on assessments, check-ins with teachers to ensure understanding, shorter work intervals, concise directions, peer tutoring, and preferential seating. Extra time and preferential seating were supposed to be used for standardized assessments, not classroom tests. However, many of Maya’s specified accommodations, such as shorter work intervals and peer tutoring, were not implemented (e.g., Maya was given the same assignments and due dates as her classmates).

At the start of the intervention, Maya was at risk of failing the standardized assessments required by ESSA (2015) for students to advance to the next grade. As a resident of the state of Georgia, Maya was expected to take the Georgia Milestones Assessment (Georgia Department of Education, 2017) in grades three through eight. Maya was also required to pass math, reading, and two more of her five classes with a grade of 70 or above to advance grades (Georgia Department of Education, 2017).

Regarding family life, Maya lived with her mother. Maya’s mother did not respond to invitations to attend IEP meetings. Maya appeared disengaged from her education, particularly in the hospital. For example, she never responded to hospital lessons with work materials because she reportedly believed she was “not in school” and the teacher was “not [her] real teacher.”

The hospital staff (teacher, medical providers, psychologist, social workers, nurses) planned to foster collaboration among themselves, her mother, and her school to improve her school functioning. The hospital team reviewed her grades after every quarter. Changes were made to the intervention based on her performance. Below are descriptions of the outcome measures and interventions.

Methods and Results

Discussion

The goal of the current study was to develop academic intervention recommendations for children with chronic illness based on a quality improvement case study conducted in the USA. Maya was presented as a case example because she, like many children with chronic illness in the country, experienced health-related school absences, physical impairment, and psychosocial stressors that led to academic failure (Haas & Fosse, 2008). Our intervention began by testing AAP recommendations that a hospital, school, family collaboration would boost skills and morale to increase academic achievement for children with chronic illness (AAP Committee on School Health, 2000; Olson et al., 2004). Additional interventions were introduced and evaluated systematically, based on Maya’s changes in performance.

The first cycle of the intervention demonstrated that the hospital staff’s involvement in IEP meetings helped foster collaboration among stakeholders. Consistent with our expectations, an increase in the hospital and family’s involvement in planning meetings improved the implementation and effectiveness of Maya’s IEP. For example, psychoeducation on Maya’s chronic illness and regular contact among parties increased the transmission of missed work and information on school standards. As a result, Maya’s hospital work became more productive, she received school credit for outside work, and she gained consistency across domains. The full team was also better able to adjust IEP goals and interventions using the diverse perspectives on Maya’s cognitive and academic strengths and weaknesses that each team member contributed.

Another anticipated product of the intervention was that Maya’s mother learned to independently advocate for and help her daughter. First, the hospital team’s modeling, as well as their assessment of the mother’s feelings of preparation, understanding of the language, and ability to articulate her daughter’s academic and social needs during IEP meetings, led to increased school involvement and advocacy. Maya’s mother’s confidence and skills were also bolstered through a parent support group. Parent support groups have many benefits, including offering an efficient method for disseminating information while providing social support that may mitigate stress (Minjarez, Williams, Mercier, & Hardan, 2011). Specifically, our group was consistent with and further supports previous research that parental advocacy interventions should focus on three goals: improving the parent’s ability to advocate, increasing the parent’s feelings of expertise, and fostering self-efficacy in the parent’s ability to protect the child (Lutenbacher, Karp, Ajero, Howe, & Williams, 2005).

While the current study did find some benefits to and effective methods for fostering a partnership among and between the family, school, and hospital, the collaboration did not result in the desired academic impact. Maya’s academic progress was minimal after Cycle 1, even with increased family and systemic support. Our findings contrast with those of previous research demonstrating that supportive, organized homes protect against academic failure for children with neuropsychological deficits (Fastenau, Shen, Dunn, Perkins, Hermann, & Austin, 2004) and other underperforming children in the USA (Berger, 1991).

Our case study also did not support recent recommendations that increased collaboration among stakeholders decreases the achievement gap for children with chronic illness, at least in USA institutions (AAP, American Public Health Association, & National Resource Center for Health and Safety in Child Care and Early Education, 2011). In sum, we suspect that increased support in the home environment and improved relationships among families, schools, and hospitals may have collateral benefits but may be insufficient for improving academic outcomes for children with chronic illness in the USA.

In response to Maya’s limited academic progress in Cycle 1, the hospital team explored alternative teaching approaches to make up for missed lessons in subsequent cycles. First, we supplemented tutoring with the hospital teacher with both an online program and in-vivo tutoring with local experts. When these latter approaches were found to yield only small improvements, the hospital team adjusted the frequency and format of tutoring in the following cycles until Maya was passing all classes. Given that Maya showed the most improvement when individualized tutoring with specialists was supplied both in-person and online, we hypothesize that technology is a particularly feasible and effective way of supplying missed instruction for children with chronic illness.

Research on online schooling and blended learning (combinations of in-person and online schooling) is still at an emerging stage; however, such approaches are increasingly used with children with chronic illness (Coy, 2014; Stella & Corry, 2017). It has been suggested that children with chronic illness may benefit from the individualized pacing and freedom to make mistakes without peers around that is uniquely available with online formats (Stella & Corry, 2017). It is also expected that online schooling may promote metacognitive skills, such as autonomy and responsibility (Terras, Leggio, & Phillips, 2015). Some caveats are in order; however. Online schooling lacks peer interaction and requires some degree of technical skills, self-discipline, time management, self-esteem, responsibility, motivation, and economic resources (Fernandez et al., 2016).

Based on our case study, we expect that web programs with accountability components will be most helpful for students with chronic illness, negative academic histories, and co-occurring psychosocial stressors. For example, Maya’s grades improved slightly following the introduction of a web-based program when the hospital team could monitor the number of hours she spent on the application and progress on assessments, even though her reported motivation was low at the time. Additionally, Maya made the most gains when tutoring was offered via video chatting. We expect that online tutoring resulted in greater improvements than the more generic online program because the former included individualized learning and the human interaction had socioemotional benefits that appeared to bolster self-efficacy and motivation. Thus, our findings are consistent with previous literature that online programs are more effective when they maximized teacher-student interactions (Greer, Rowland, & Smith, 2014).

Regarding the feasibility of the intervention, the hospital team found many ways to reduce the cost of each intervention. Specifically, partnerships with universities, community organizations, the hospital volunteer coordinator, and the school team allowed for affordable educational opportunities. The hospital was able to subsidize the online program and to provide Maya with a computer in the hospital library, as needed. The hospital team’s consultation during IEP meetings also helped them secure additional interventions for Maya, such as meetings with school counselors. The current study suggested that capitalization of existing tutoring programs, knowledge of school requirements, and effective advocacy may allow other areas to similarly provide cost-effective interventions.

While many goals were met, there were challenges. First, Maya showed resistance at the beginning, likely because of her previous negative experiences in school. Addressing Maya’s self-confidence and approach to learning using strategies such as clear and specific feedback, extra time to learn material before it was introduced in class, and regular meetings with the school counselor likely increased buy-in. We conclude that hospital staff, family, and school should consistently assess and address psychosocial factors, including attitudes toward school and problem-solving abilities, particularly if self-directed activities like online schooling will be used.

The second challenge involved keeping the team focused and hopeful when strategies did not result in the desired improvements. Maya, her mother, the hospital team, and the school learned the value of perseverance and patience when Maya’s grades declined or did not appear to improve over the course of five cycles in two years. One helpful method of maintaining morale was for the school program educator to meet monthly with the hospital team to analyze data, discuss and monitor the process, and make adjustments.

The final challenge was the limited frequency of Maya’s hospital visits. It was difficult to supplement missed instruction only once every three weeks. Thus, frequent communication among all parties was essential to ensure that multiple workers in various domains could assist and provide expertise. The option to provide Maya’s hospital tutoring via online sessions was also important.