CF families want care teams to help them manage school needs
Survey finds desire for CF teams to address accommodations, other issues
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People with cystic fibrosis (CF) and their caregivers want their CF care teams to help with school needs, including absences, accommodations, and infection control, according to a U.S. survey.
The survey revealed common issues “that warrant targeted and proactive attention to support academic achievement and wellbeing,” the researchers wrote.
The findings provide “an outline for which CF care teams can begin to address these potentially life‐changing issues,” they added.
The study, “Navigating School While Living With Cystic Fibrosis: Barriers and Support Strategies From the Patient and Family Perspective,” was published in Pediatric Pulmonology.
Patients and caregivers were comfortable discussing school with their care teams and preferred that the team start those conversations, the survey found.
School resources limited
CF symptoms are caused by abnormally thick, sticky mucus that primarily affects the respiratory and digestive systems. Although advances in CF treatment have markedly extended life expectancy, quality of life for people with CF continues to be affected by the burden of daily care.
School is a primary setting in which children experience the effects of CF. Factors that increase the likelihood of poor academic outcomes include the need for health-related accommodations and special education services, absences, and relationships within the school environment.
However, CF-specific school resources are limited, most CF care teams do not proactively screen for educational risk, and few CF centers have education specialists.
To address these issues, a team led by researchers at Cincinnati Children’s Hospital asked people with CF and their caregivers how they view the care team’s role in educational success and the barriers they encounter. Fifty-four caregivers responded, along with 92 CF patients or caregiver-parent pairs across 28 states.
Patients and caregivers reported similar experiences in school‐related discussions. CF care teams most often asked about grade level, school type, whether a health plan is in place, and how CF symptoms affect the school day. Health plans include an individualized education program or a 504 plan (formal school plans that document a student’s needs).
Less frequently addressed topics included absences, contact about unexcused absences, and a release of information allowing the care team to communicate directly with the school.
Care teams most commonly discussed accommodations such as access to enzymes or other medications, bathroom access or extra passes, and carrying a water bottle. The least discussed were elevator access and a water source other than a shared fountain.
CF patients emphasized the importance of extended time to make up work after an absence, access to enzymes or other medications, and bathroom access more than caregivers did.
“Balancing appointments and missed time from school is the hardest part for sure,” one caregiver said.
Teams ‘should ask about bullying’
CF patients often reported bringing emotional or behavioral challenges affecting the school day to their care team. They also raised the need for support with health accommodations in school plans and infection control concerns. Caregivers reported needing help with CF-specific accommodations in school plans and raised concerns about infection control.
Respondents expressed concerns about sleepiness during school, needing to repeat a grade, and bullying. Free-text comments linked bullying to gastrointestinal issues, frequent coughing, and feeling “different” from peers. Concerns that race, ethnicity, or gender negatively affected the school experience were rare.
“CF care teams should ask about bullying for kids who are smaller and skinnier in build,” a respondent said.
Most respondents said their care team had helped with school tasks. Respondents most often requested help completing school forms, developing a school plan, and educating the school about CF. Other requests included direct communication with the school and attendance at school meetings.
Respondents noted that a person with CF can “look healthy,” so needs may not be visible to school staff. “The school does not seem to understand how CF impacts [the patient’s] life,” said one. “They see a kid who looks ‘normal’ and don’t seem to get that he is sick.”
Most were comfortable raising school questions with their care team during clinic visits and outside visits. Patients commonly used and preferred patient portals, email, and phone outside the clinic. Text messaging was the most desired option for increased use, and video communication was the least preferred and least used.
Most survey respondents had access to school nurses, but access to a CF center-based school specialist was uncommon. Referral discussions most often concerned attention deficit/hyperactivity disorder (ADHD) and learning or achievement. Among online resources, the CF Foundation was the most common, followed by Compass, a foundation service.
In an open-ended question about the biggest challenges, people with CF most often described balancing school performance with health, frequent absences, and acceptance of their accommodations. One wrote of “playing catch-up, whether that be with schoolwork, socially, mentally, or otherwise.”
Caregiver themes included navigating illness, missed school, accessing medications, bathroom access, and educating teachers and administrators about CF. One caregiver described “tremendous stress” for a family managing school forms, meetings, care needs, and medical appointments.
“This study underscores that it is essential to incorporate school-related assessment and resource allocation into standard CF care, which will likely require additional planning as [people with CF] and CF care teams adjust to the changing model of CF care,” the researchers wrote. “[Patients] and their caregivers want to have these conversations with their care teams.”
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