Childhood Cancer Survivors and Distance Education Challenges: Lessons Learned From the COVID-19 Pandemic
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Journal of Pediatric Psychology, 2021, 1–10
doi: 10.1093/jpepsy/jsab103
Original Research Article
Childhood Cancer Survivors and Distance
Education Challenges: Lessons Learned From
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the COVID-19 Pandemic
Lisa B. Carey ,1,2 EDD, Kathy Ruble,3 PHD, Juliana Pare
-Blagoev,2 EDD,
Kimberly Milla,1 MS, Clifton P. Thornton,4 PHDC, Sydney Henegan,4 BS,
and Lisa A. Jacobson,1,5 PHD
1
Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD, USA, 2Johns Hopkins University
School of Education, Baltimore, MD, USA, 3Johns Hopkins University School of Medicine, Baltimore, MD, USA,
4
Johns Hopkins University School of Nursing, Herman & Walter Samuelson Children’s Hospital, Baltimore, MD,
USA, and 5Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine,
Baltimore, MD, USA
All correspondence concerning this article should be addressed to Kathy Ruble, PHD, Bloomberg Children’s
Center, Johns Hopkins Hospital, 1800 Orleans St., Baltimore, MD 21287, USA. E-mail: rubleka@jhmi.edu
Received 19 April 2021; revisions received 14 September 2021; accepted 16 September 2021
Abstract
Objective Pediatric cancer survivors have historically struggled to receive adequate educational
supports. In Spring 2020, the COVID-19 pandemic forced an emergency switch from traditional in-
person education models to distance education, but little information is available regarding experi-
ences of pediatric survivors’ coping with schooling since that time. Methods This article
presents exploratory mixed methods findings from a quality improvement project including quali-
tative interviews and a quantitative survey conducted with parents of pediatric oncology survivors
identified through neuropsychological assessment, and the use of school-based services as having
educationally relevant neurocognitive impacts of disease or treatment. The interviews explored
experiences of education and instructional delivery during the COVID-19 school closures in spring
of 2020 and the beginning of the 2020–2021 school year and served as the foundation for a quanti-
tative survey to determine the generalizability of findings. Results Qualitative interviews
highlighted 3 emergent themes regarding the shared experiences of distance schooling for chil-
dren with cancer during the COVID-19 school closures: (a) attention, (b) mental health, and (c) ac-
cess to instruction. A follow-up quantitative survey supported the qualitative findings and their
generalizability to the schooling experiences of other children with cancer during the pandemic.
Conclusion This article describes and explores each theme and offers suggestions for pediatric
supports and changes to provider service delivery (including weblinks to access project-developed
resources) as a result of ongoing pandemic-related schooling needs.
Key words: neurocognitive/executive functioning; oncology, school-age children; school functioning;
stress.
Introduction survivors (Barrera et al., 2017; Oh et al., 2017), with
neurocognitive impairments having a significant im-
Persisting disease- or treatment-related impacts have
pact on quality of life, especially as related to schooling
been well-documented among childhood cancer
and educational success (Gummersall et al., 2020;
C The Author(s) 2021. Published by Oxford University Press on behalf of the Society of Pediatric Psychology.
V
All rights reserved. For permissions, please e-mail: journals.permissions@oup.com 12 Carey et al.
Jacobson et al., 2020). These neurocognitive impair- during the COVID-19 pandemic via a combination of
ments result from demyelination, reduced white matter qualitative interviews and quantitative confirmatory
tract integrity, decreased white matter volume, and/or survey and to identify clinically relevant support strat-
development of leukoencephalopathy after intrathecal egies during periods of distance or hybrid education.
chemotherapies (Ikonomidou, 2018). Additionally,
size/location of tumor, extent of neurosurgical proce-
Methods
dures, and treatment with radiation (Silva & Aquilina,
2019) in brain tumor survivors impact cognitive func- This quality improvement project was designed to un-
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tion (Stavinoha et al., 2018). Common impairments in- derstand experiences and perspectives of parents of
cluding attention, processing speed, and working childhood cancer survivors regarding schooling during
memory often lead to difficulties in academic achieve- COVID-19, identify specific areas of school-related
ment and overall intellectual development (Stavinoha need, and determine ways in which the care team
et al., 2018) all of which can complicate schooling and could better support educational needs of survivors
educational attainment after cancer. during the pandemic. The project had three aims: (a)
Returning to school after a diagnosis of pediatric identify current concerns and distance education needs
cancer is often thought of as a return to “normalcy” for via qualitative interviews with parents of survivors
survivors and their families (McLoone et al., 2011); who are eligible for special education and related serv-
however, missed schooling and neurocognitive impacts ices due to their cancer-related schooling difficulties;
of disease and/or treatment can make this return any- (b) validate these initial findings in a larger survey, dis-
thing but normal. The COVID-19 pandemic disrupted seminated in fall/winter 2020 to families of childhood
normalcy of schooling for all students as many school survivors; and (c) identify and implement patient-
districts across the United States opted for fully remote focused clinical strategies to attempt to address the
(e.g., online only) or some form of hybrid (partially in- identified concerns. The project was approved by the
person and partially online) instruction, with nearly hospital’s Institutional Review Board (IRB); interview
93% of U.S. households with school-aged children participants consented to audio-recording and were
reporting some form of distance education during 2020 compensated for their time.
(Mcelrath, 2020) and remote schooling persisting into
2021 for many districts. Conversely, distance education Explanatory Sequential Mixed Methods Approach
as a strategy may better address schooling needs of ru- A mixed methods approach involves collection of both
ral students, mitigate building closures due to inclement qualitative and quantitative data and an integrated anal-
weather, or even permit student access to specialty edu- ysis “based on the combined strengths of both sets of
cational programming (i.e., magnet programs) in the data to understand the research problems” (Creswell,
future (Gemin et al., 2018). Therefore, the pandemic 2015). The current project used an exploratory sequen-
will likely induce lasting effects on instructional deliv- tial mixed methods design to explore and understand
ery, but little is known regarding the impact these the problem with qualitative interviews (Creswell,
changes have on schooling in survivorship. 2015; Merriam and Tisdell, 2015), with the inquiry
To date, no data are available regarding perspec- phase then informing the design of a quantitative sur-
tives of pediatric survivors and their families on vey, data collection, and analysis (Figure 1). An explor-
COVID-19-related schooling changes, survivors’ abil- atory sequential design helped ensure that qualitative
ity to access schooling via distance learning formats, findings matched the experiences reported by parents of
or concerns they and their families may have about ef- the broader population of pediatric survivors.
fectiveness of distance learning or hybrid schooling
models. Information is also needed regarding the im- Measures
pact of COVID-19 on survivors’ access to accommo- Semi-structured interviews focused on parent perspec-
dations or specialized instruction necessary due to late tives of schooling experiences for childhood cancer
effects of treatment, which may include adapting or survivors during distance education necessitated by
modifying assignments and ensuring that materials are the COVID-19 pandemic. Preliminary questions in-
accessible and appropriate to the student’s needs. cluded such items as (a) describe your overall impres-
Understanding perspectives of survivors and families sions of home learning during school closures in
on schooling during COVID-19 and identifying areas spring 2020; (b) during the spring school closures,
of particular concern is critical and may offer ways to how did services and special teaching—if any—hap-
intervene to optimize quality of life during and after pen for your child?; (c) Did your child experience any
the COVID-19 pandemic and in the anticipated new problems with accessing services and instruction
longer-term changes to education strategies. The cur- remotely?; if so, (d) How were these new problems
rent project sought to describe parent perspectives of addressed by the school; and (e) Was there anything
schooling experiences of survivors of childhood cancer that went well or better with remote instruction? AllDistance Education During COVID-19 3
Phase 1 Phase 2
Qual Data Use of Quant Data
Collection Qual Collection Quant Interpret
results to
Results and Quant
and build Results
Analysis Results
Analysis instrument
Figure 1. An exploratory sequential design of the mixed methods study of pediatric cancer survivors access to educational
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and related services during COVID-19.
interviews were recorded with permission, after con- Relationships between item means, selected response
sent, and transcribed for analysis. Phenomenological percentages, and participant demographics (i.e., diag-
analysis, a methodology used to “determine what an nostic groups) were calculated using chi-square and t-
experience means for the persons who have had the tests, as appropriate.
experience” (Moustakas, 1994) was used to establish
emergent themes reflecting shared experiences of Participants
schooling for survivors during COVID-19. This ap- Although sample sizes for the two phases of the proj-
proach focuses on gaining insights from participants ect differed, the respondent population (i.e., parents
who have had a shared experience (in this case, a child of survivors attending K12 schooling) remained
who is a cancer survivor engaging in remote learning consistent.
during the COVID-19 pandemic) and collects data re-
garding the experience and how it was experienced. Qualitative Interviews
Semi-structured interviews were transcribed for analy- Parents of five school-aged survivors (off-treatment)
sis. Transcripts were read through several times in or- were identified and recruited through their engage-
der to establish the larger story being told by ment with an ongoing quality improvement project as
participants and to begin to conceptualize themes well as a review of patient records. Parents of survi-
(Saldana, 2016). Data then went through two series of vors were purposefully recruited to reflect a diversity
manual coding. First, statements and phrases were of survivor characteristics: cancer type and receipt of
coded; next, the transcripts were read while simulta- CNS-directed therapy, age/school grade level, race/
neously listening to the recordings in order to code for ethnic background, and history of documented educa-
emotionality and tone. This allowed for themes to tional supports, such as special education and related
emerge not only based on what was said, but which services (see Table I); all were attending school re-
parts of the data were emphasized by the speaker. The motely. Demographics data were collected through
codes were then grouped into and common themes parent reports within the survey. Race, ethnicity, and
were established and interpreted regarding the shared gender identity categories were designed to align with
experiences of pandemic-necessitated remote learning National Institute of Health standards and the report-
for childhood cancer survivors. ing guidelines of the Patient-Centered Outcomes
Following interviews, survey questions were devel- Research Institute as well as the IRB. Participants ex-
oped based upon the concerns identified by analysis. perienced fully remote schooling for the same amount
The anonymous, digital survey was disseminated in fall/ of time. Each interview lasted approximately 1 hour
winter 2020 via flyers with QR codes and links in the and was conducted via videoconference software (e.g.,
hospital’s pediatric oncology clinics, as well as ads with Zoom) in summer 2020.
links within local oncology foundation emails, and tar-
geted social media posts. Responses were received from Quantitative Survey
late October 2020 through February 2021. Completion The survey was digitally distributed through social
was optional; participants were offered an entry into a media postings in the fall of 2020 with initial engage-
gift card drawing. Survey questions about current feel- ment of 78 participants by February 2021. Of those
ings of worry and loss of in-person learning, social inter- parents who began the survey, 54 answered the target
actions, and illness were rated on a 10-point slider scale questions comparing fall/winter 2020 schooling expe-
(never—always). Questions related to attention and fo- riences to spring 2020 (e.g., the initial months of the
cus were rated on a 5-point Likert scale (never, some- pandemic). Survivor (children and adolescents with a
times, about half the time, most of the time, always). cancer diagnosis who are receiving chemotherapy and/
or radiation or have completed treatment) demo-
Survey Data Analysis Plan graphics data were collected from the parent partici-
Means were calculated for Likert-scale items. pants (see Table I). These data are generally consistent
Percentages were calculated for select response items. with trends seen in the pediatric oncology clinic at our4 Carey et al.
Table I. Survivor Characteristics for Qualitative Interviews and Quantitative Survey
Qualitative Interviews (N ¼ 5) Quantitative Survey (N ¼ 54)
a
Gender identity
Male 60% (n ¼ 3) 61% (n ¼ 33)
Female 40% (n ¼ 2) 39% (n ¼ 21)
Race
White 60% (n ¼ 3) 72% (n ¼ 39)
Black/African American 20% (n ¼ 1) 16.7% (n ¼ 9)
Asian 1.9% (1)
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Two or more races 3.7% (n ¼ 2)
Other/rather not say 5.6% (n ¼ 3)
Ethnicity
Hispanic 20% (n ¼ 1) 7.6% (n ¼ 4)
K-12 school level
Elementary school 60% (n ¼ 3) 46.4% (n ¼ 25)
Middle school 20% (n ¼ 1) 12.5% (n ¼ 7)
High school 20% (n ¼ 1) 41.1% (n ¼ 22)
Cancer diagnosis
Leukemia 60% (n ¼ 3) 44.4% (n ¼ 24)
Non-Hodgkin lymphoma 7.4% (n ¼ 4)
Hodgkin lymphoma 1.9% (n ¼ 1)
Brain tumor 20% (n ¼ 1) 16.7% (n ¼ 9)
Retinoblastoma 1.9% (n ¼ 1)
Sarcoma 9.26% (n ¼ 5)
Other 20% (n ¼ 1) 18.5% (n ¼ 10)
a
Survey included options for non-binary and rather not say, 0% of participants selected these options.
institution. In addition to patient demographics, par- attending to the task at hand to the exclusion of dis-
ticipants indicated that 75% are the parent(s)/guardi- tractors can be particularly challenging for survivors.
an(s) of children/adolescents who had completed Not surprisingly, interviewed parents reported that
treatment. Two parents indicated their child was at- survivors who already had documented difficulty with
tending school fully in-person and were dropped from attentional control based upon previous neuropsycho-
analyses as the target population focused on remote logical evaluation experienced significant difficulty
learners; of the remaining participants, 84.6% indi- with distance education (attending to and completing
cated their child was participating in fully distance ed- work either online or via assignments sent home). One
ucation, while 15.4% were participating in some type parent stated, “I think the hardest thing is her atten-
of hybrid schooling. tion span. . .it’s [instruction] all on a screen and it’s
just not going to keep her attention that long at all. . .
she usually has charts where she gets rewards [when
Results
in-person], and she just needs high energy for her to be
The project followed two sequential phases, including engaged.”
qualitative interviews (phase 1) and development/dis- Notably, schooling during COVID-19 offers lim-
semination of a quantitative survey (phase 2; see ited direct instructional time with classroom teachers
Figure 1). Phase 1 analysis of interviews revealed three or school-based service providers and less opportunity
themes: (a) survivor ability to focus as a factor of dis- for individualized “classroom” supports, requiring
tance education success, (b) increased feelings of loss students to manage their learning and assignments
and anxiety, and (c) issues with accessibility of the cur- more independently, or with greater parent support
riculum due to limited accommodations/modification. when unsuccessful independently (Nelson, 2020). This
Quantitative survey responses validated the themes need for parent assistance was reported as especially
and supported generalizability to the schooling experi- problematic because most caregivers indicated a need
ences of K12 cancer survivors during the pandemic. to be working themselves. While survivors with previ-
Findings are described and situated in the context of ously identified attention difficulties typically had
reported schooling experiences below. been provided with supports for attention and/or be-
havior in their pre-pandemic in-person school setting,
Attentional Control and Distance Education parents reported that school staff struggled to adapt
Attentional dysregulation is a well-recognized conse- these supports to the online setting. As a result,
quence of CNS-directed therapies (Anderson & parents reported greater struggles and reduced educa-
Kunin-Batson, 2009), meaning that sustaining atten- tional success for their survivors during remote
tion over longer periods of time and selectively schooling.Distance Education During COVID-19 5
These findings were supported by the quantitative about a possible return to school, one parent stated,
survey results (see Table II). With regard to attending “I’m not comfortable, not with his health, because his
to remote instruction, 73.3% of parents reported that immune system, from what I understand. . . it’s still a
their child struggled at least half the time, 12.5% hindrance, so I’m really nervous.” Parents also
reported these attentional struggles persisted even in recalled past experiences of their children getting sick
small group video sessions, and 68.9% reported due to classmates attending school while ill, experien-
greater difficulty attending to online/remote instruc- ces that have made them doubt their children’s safety
tion, compared to regular in-person instruction. While while returning to in-person schooling during the
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there was not a statistically significant difference in at- pandemic.
tention concerns across diagnostic groups [i.e., acute Furthermore, interviewed parents reported feelings
lymphoblastic leukemia (ALL)/non-Hodgkin lym- of loss and frustration in their survivors, specifically
phoma (NHL), brain tumor, sarcoma/other non-CNS related to the impact of school closures on in-person
malignancy; X2(2) ¼ 1.28, p ¼ .53] or by on-treatment attendance and peer contact. This sense of loss of a
status [t(43) ¼ -0.39, p ¼ .70], there was a trend in much-anticipated experience was well-articulated by a
worse attention concerns for the brain tumor group. It parent who shared that her survivor regularly com-
is possible that the sample size limited the ability to plained: “I finally got to be a regular kid and now
detect a statistical difference. this.” Another parent shared that her survivor la-
mented, “I finally had my chance to be normal and
Feelings of Loss and Anxiety now nothing is normal.” These feelings of loss were
Of concern, interviewed parents reported that changes directly related to school absences during treatment,
in home and school routines and discussions of with parents reporting that survivors connected being
COVID-19-related illness and death in the media were out of school during COVID-19 with memories of ill-
associated with increases in anxiety and worry among ness and treatment.
childhood cancer survivors. One parent reported any These findings and concerns were echoed, albeit in-
talk of the pandemic at home resulted in panic and consistently, in survey responses (Table II). Feelings of
crying, “He still has a lot of fears since his diagnosis. loss for missing out on in-person learning were quite
This [the pandemic] has made that harder. He’s evident (M ¼ 7.22, SD ¼ 2.66, on a 10-point scale),
started crying, ‘I don’t want you to talk about dying.’” and did not differ by schooling model (i.e., remote vs.
Another parent stated, “I’ve noticed his anxiety has in- hybrid, p ¼ .88). Likewise, survivors tended to show
creased [since school closed].” worry about missing friends (M ¼ 6.79, SD ¼ 3.13)
Given that survivors may have late effects of treat- and loss of these social interactions (M ¼ 7.06,
ment considered comorbid conditions associated with SD ¼ 2.60), again without a difference by schooling
poorer outcomes of COVID-19 infection, parents indi- model (all p > .10). Survivors were also reported to
cated that both they and their child worried about the show concerns about getting sick (M ¼ 4.48,
risks of returning in-person, should their district shift SD ¼ 3.10) and potentially exposing others (e.g., fam-
from distance to in-person schooling. When asked ily members) to illness (M ¼ 3.33, SD ¼ 2.86). Fears
Table II. Survey Results: Instruction and Psychosocial Experiences
Whole ALL/NHL BT Sarcoma
Sample
M SD M SD M SD M SD
My child struggles to focus, pay attention, and/or sit still during. . . (scale: never, sometimes, about half the time, most of the time, always)
Video class instruction 2.37 1.11 1.73 1.52 2.60 0.89 2.00 1.28
Video small group instruction 1.93 1.21 2.13 1.12 3.00 0.70 2.40 1.18
Video therapy instruction 2.14 1.42 1.84 1.21 2.20 0.84 1.80 1.32
My child has a harder time with focus and attention during online learning 2.46 1.31 2.12 1.27 3.20 0.84 2.57 1.45
Currently, my child is. . . (response type: slider, 0: never—10: always)
Feeling loss over missing learning 7.21 2.61 6.88 2.85 7.71 1.98 7.85 2.08
Feeling loss over missing friends 6.90 2.70 6.65 3.00 7.80 1.09 7.47 2.17
Worried about missing learning 6.00 5.66 6.29 2.8 4.43 2.82 6.31 2.21
Worried about missing friends 6.80 3.01 6.56 3.27 6.40 2.07 7.20 3.38
Worried about getting sick 4.51 3.00 3.90 2.61 5.83 2.99 4.38 3.62
Worried about getting others sick 3.20 2.8 2.50 2.15 4.80 3.19 4.10 3.54
Happy with distance learning 3.82 2.84 3.20 2.86 4.67 2.73 3.64 2.46
Happy with less interaction with classmates 2.90 3.20 1.78 1.79 6.67 3.27 1.78 1.79
Note. ALL ¼ acute lymphoblastic leukemia; BT ¼ brain tumor; NHL ¼ non-Hodgkin lymphoma.6 Carey et al.
about getting sick did not differ by model (i.e., remote vision, low reading ability, and other needs that could
vs. hybrid; p ¼ 0.39), whereas children participating in be supported through assistive technology, none of the
hybrid schooling were somewhat more likely to show interviewed parents reported an assistive technology
concern for getting others (e.g., family members) sick assessment prior to spring 2020. Although parents
[t(31) ¼ -2.02, p ¼ 0.05]. reported concerns with accessibility of online content
during distance education, none of the survivors’
Curriculum Inaccessibility schools reportedly suggested assistive technology or
Students with disabilities, including those associated switched to more digitally accessible instructional
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with cancer treatment, often require changes to the materials.
regular curriculum in the form of accommodations or Likewise, among survey respondents (Table III),
modifications. They may also require specialized in- only 14.9% indicated that their child’s school team
struction, such as one-on-one or small group instruc- discussed assistive technology options to support on-
tion. Accommodations, modifications, and specialized line learning. Notably, 17.7% of survivors reportedly
instructional methods are typically documented in an struggled to access online materials/instruction due to
individualized education program (e.g., special educa- difficulty with vision (presentation/materials hard to
tion programming; Individuals with Disabilities see) or hearing (lack of closed captions/sign language
Education Act, 2004) or an accommodation plan interpretation), while 5.9% struggled with websites
(Section 504 plan; e.g., regular education supports;
requiring navigation via computer mouse. Consistent
Protecting Students with Disabilities, 2020) drafted by
with concerns for management of complex tasks (e.g.,
the school team. While each survivor described in
executive function) in pediatric survivors, 20.0% of
interviews received some type of accommodations,
parents reported that their child found navigating re-
modifications, or specialized instruction prior to
quired online materials/websites to be confusing.
COVID-19, none of the interviewed parents reported
access to accommodations and/or modifications made
to the general education curriculum during the Discussion
COVID-19 school closures. As one parent stated, “I
These findings offer evidence for impacts of the
basically feel like everything just got dropped.”
COVID-19 schooling changes on childhood cancer
Parents reported having to do the work of creating
survivors and their families, and suggest the presence
accommodations themselves, requiring their own re-
of attentional struggles, new or increased psychosocial
search into relevant techniques. As one parent
symptoms, and changes in survivors’ access to the edu-
explained, “I did a lot of Googling.”
cational curriculum. These findings echo the conclu-
Of note, among survey respondents, one-third
(32.7%) reported their child received special educa- sions of a recent review that highlights special
tion services prior to the pandemic, and only 35.3% considerations for vulnerable learners during the
of those indicated their child actually received contin- COVID-19 pandemic (Drane et al., 2020). Care teams
ued services during spring 2020. Special education responsible for pediatric survivors should be aware of
and related service delivery modalities varied, with these concerns and related factors that may make
28.8% of parents indicating their child received serv- schooling during COVID-19 particularly challenging
ices via consult, 26.9% remotely/online via periodic and consider specific support strategies.
check-ins from special educators/service providers,
11.5% receiving emails from educators/service pro- Table III. Survey Results: Curriculum Accessibility Items
viders, and 30.8% reporting no contact from service
My child struggled to access the materials Percent n
providers (proportions do not sum to 100%, multiple shared online because. . .
selection allowed). (select all that apply; response optional)
Another strategy frequently used to support access
Reading was too difficult 16.30 14
to the curriculum for survivors with treatment-related Presentation of materials was too diffi- 14.01 12
impacts is “assistive technology,” defined as any soft- cult for my child to see
ware or device that supports daily functional skills. Lack of closed captions on videos/sign 3.50 3
For example, every survivor described in phase 1 is language interpretation
Websites required navigation with a 5.81 5
reading below grade-level and would benefit from
mouse
speech-to-text software, which can enable student lap- Navigating online was confusing 19.82 17
tops/tablets to read digital text aloud. As one parent My child’s school team talked to me 14.60 7
reported, “I’d say that probably half of the things sent about assistive technology for online
by the teacher were not in her realm of understanding learning.
I searched for assistive technology to help 13.02 6
or reading. . . [my] concerns were shared, but nothing my child’s online learning needs.
came out of that.” Despite these survivors having lowDistance Education During COVID-19 7
Given that many children and adolescents treated peers or siblings (Brinkman et al., 2016; Michel et al.,
for cancer are likely to have trouble with attention and 2010; Zeltzer et al., 2009). Given that interviewed
focus (Anderson & Kunin-Batson, 2009) due to either parents reported increased mental health symptoms in
acute or longer-term neurocognitive effects, or both, survivors, oncology clinicians and other care team
patients who struggle with attentional control may members should routinely assess patients for unmet
need new, distance schooling-specific recommenda- mental health needs (“Long-Term Follow-Up
tions shared with the school team. Referrals for neuro- Guidelines for Survivors of Childhood, Adolescent and
psychological evaluation can help to clarify the nature Young Adult Cancers, Version 5,” 2018; Steele et al.,
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of the survivor’s attentional needs as well as any co- 2015), and make referrals to hospital/clinic-based
morbid psychosocial or learning difficulties that may mental health care, as appropriate. The use of tele-
further exacerbate learning remotely. Referral to pedi- health (depending on state licensing and insurance
atric psychology for behavioral interventions or ther- coverage) for provision of psychological care
apy can help survivors to acquire new coping skills (Ramtekkar et al., 2020) during this period may help
and learn strategies applicable to new learning envi- to reduce at least some of the barriers that make
ronments. In addition to referrals, prompted by the school-based mental health services while helping to
qualitative interview data, our team developed a series meet the recommendations form the psychosocial
of freely accessible, online, parent and teacher-friendly standards of care to provide ongoing assessments and
blog posts addressing challenges of remote schooling therapeutic support throughout the trajectory of can-
for students with attentional or executive dysfunction cer treatment among our survey respondents, feelings
(e.g., https://www.kennedykrieger.org/stories/linking- of loss were more often reported than fear or anxiety.
research-classrooms-blog/executive-function-and-on- Given the school and peer interaction losses experi-
line-learning). Links to such posts can be regularly in- enced during treatment, it is not surprising that the
cluded in a “Schooling during COVID-19” school changes during COVID-19 can bring back
communication that providers can send to families of memories of illness and/or isolation. As with the find-
survivors via the electronic medical record at our insti- ings related to attention, our concern is less related to
tution or include in discharge instructions and other comparing children with cancer to other children
educational materials for families. The blog posts are (with or without disabilities) with regard to COVID-
intended to support both patient families and teachers. 19 mental health concerns, but rather to highlight the
Difficulty with attention during the schooling dis- unique ways pandemic-related schooling changes are
ruptions associated with COVID-19 has been anecdot- associated with increases in worry and loss in children
ally discussed, yet to date, not empirically who have experienced cancer. Providers should be sen-
documented. It is unknown how patients with cancer sitive to these losses, which while impactful for all chil-
compare to other children (with or without disabil- dren, may be even more distressing for a child who has
ities) with regard to attentional struggles during experienced a life-threatening illness and associated
COVID-19-related schooling disruptions. Given that mental health impacts.
difficulty with attentional control represents a known Furthermore, providers should have open discus-
side effect of childhood cancer and its treatment, it is sions with patients/families about the risks of return-
helpful to know from families that these issues contin- ing to school during COVID-19 and the availability of
ued or worsened during schooling disruptions and options, such as Home and Hospital or Homebound
that medical providers can help support their patients instruction. Federal guidance (Christen et al., 2020)
by discussing attentional supports with families and emphasizes that children with cancer (or a cancer his-
providing referrals and/or recommendations to the tory) are eligible for Home and Hospital during
patient’s school staff. As differences were not evident COVID-19, if and when schools return to in-person
between diagnostic groups, these data may suggest instruction without an option for online learning.
that all ALL, NHL, BT, and sarcoma survivors would Ensuring that survivors and families are aware of this
benefit from at least screening of neurocognitive needs federal guidance allowing students to “opt-out” of in-
and related impacts on schooling access. person schooling may not only reduce anxiety and
Mental health considerations are critical for all chil- also support families in understanding their rights to
dren during COVID-19 (Leff et al., 2021; Rousseau & such supports. Prompted by initial findings from the
Miconi, 2020). In the general population, more than qualitative phase of this project, our institution devel-
half of adolescents who use mental health services re- oped an online, freely accessible, patient-friendly, ex-
ceive these services in a school-based program (Ali et planatory information sheet describing student rights
al., 2019), services that may not be readily available to Home and Hospital instruction for children with
during COVID-19. Furthermore, childhood cancer chronic/pre-existing conditions during COVID-19
survivors are at greater risk for symptoms of anxiety, that can be provided to patients and families during
depression, and social difficulties compared to their visits, or sent as a “patient communication” via the8 Carey et al.
patient portal as needed outside of the context of the technologies may best support the patient. In addition
visit (e.g., https://www.kennedykrieger.org/sites/de- to hospital-based evaluation, providers can recom-
fault/files/library/documents/HHT%20Fact%20Sheet. mend that the school team assess the patient’s assistive
pdf). The International Late Effects of Childhood technology needs related to the specific schooling con-
Cancer Harmonization Group has published a com- text. Given the likely continued use of distance educa-
prehensive review of the evidence and resulting con- tion models beyond the pandemic (Cahapay, 2020),
sensus statement, including parent/patient education ensuring that survivors who require at-home schooling
material that can help providers navigate the questions have access to the supports they will need to fully ac-
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and concerns of families in this domain (Verbruggen cess their educational instruction will be critical for
et al., 2020). supporting their quality of life.
In addition to referring patients for neurocognitive The combination of qualitative interviews to elicit
evaluation to assist in documenting specific education- concerns specific to this unique period and to inform
ally relevant impacts, clinicians can help parents advo- survey development, and subsequent acquisition of
cate for Home and Hospital instruction during quantitative survey data from a larger subset of
COVID-19 by providing written documentation of as- parents of childhood cancer survivors, provide a criti-
sociated side effects, such as fatigue, and describing cal window into the challenges these patients and their
how such effects can impact the ability to maintain at- families have faced with regard to schooling during
tention during remote learning. An example of this the pandemic. Limitations of the project include the
documentation may include the following statements small number of qualitative interviews conducted, al-
for on- and off-treatment patients, respectively: though findings were generally confirmed by the 54
“John Doe is currently receiving treatment for cancer at our insti- parents completing the survey; limited information
tution. John is experiencing significant fatigue as a result of his available on pre-pandemic special education services
treatment and his parents report that he is unable to maintain at- received; and lack of information regarding parent sat-
tention for the time period required during remote classroom
isfaction regarding pre-pandemic services/delivery.
learning. I have suggested to his parents that they request his
school team assist his family in applying for home and hospital
Additionally, the qualitative sample was drawn from
teaching services.” the general region of our institution, and thus all par-
“Brianna Doe has a history of treatment for cancer at our institu- ticipants are a part of a single state’s educational sys-
tion, and experiences late-effects of treatment that put her at tem. The findings of the quantitative survey, however,
higher risk for infection and poor outcomes from COVID-19. As supported the experiences reported in the qualitative
such, given that her school district is returning to in-person ses-
interviews. Additionally, while educational systems
sion, she will need to be given the option of opting out of in-
person instruction. I have suggested to her parents that they re- may differ, the laws that govern educational atten-
quest her school team consider provision of Home and Hospital dance, special education, and schooling access for stu-
instruction for the duration of the pandemic to minimize risk of dents with disabilities are consistent across the
infection with severe consequences.” country. Regardless, findings and strategies identified
Assistive technology can support survivors experienc- can offer guidance for healthcare teams in advising
ing specific effects of therapy including sensory loss, and supporting patients, particularly if their patients
neurocognitive impacts, and more. Given impacts of continue to participate in schooling via distance mod-
cancer and its late effects on hearing (Bass et al., 2016; els after more states fully open their school doors.
Beyea et al., 2020) and vision (Peragallo, 2018; Further work should investigate whether these find-
Whelan et al., 2010), an assistive technology assess- ings of loss and attentional difficulty are more evident
ment should always be encouraged for patients who for survivors relative to other students and whether
have limited hearing and/or vision. The switch to dis- they differ due to demographic or disease characteris-
tance education highlighted an even greater need for tics, treatment types, or grade level.
assistive technology, with students expected to learn
via a new modality (i.e., online) and without the types
Conclusion
of adult assistance they would typically receive in a
traditional classroom. Findings from the current proj- The COVID-19 pandemic has presented numerous
ect suggest that the shift in method of instruction ne- challenges to society over the last year. Debates about
cessitated by the pandemic exposed potential pre- schooling have been highly contested and concerned
existing gaps in terms of survivors’ access to the cur- parents are likely to turn to the healthcare community
riculum, highlighting the critical role of digital accessi- for advice and support (Esposito & Principi, 2021).
bility and assistive technology. Regardless of the type Findings identify specific concerns of survivors and
of learning environment, clinicians should be ready to their families and offer clinically relevant suggestions
refer patients for assistive technology assessments (via for oncology and mental health care teams. More fo-
hospital-based rehabilitation services or school-based cused provider communication with parents about re-
evaluation) to help determine what types of mote learning concerns including attention, mentalDistance Education During COVID-19 9
health, and access to instruction, followed by appro- Hudson, M. M., Constine, L. S., Skinner, R.,
priate referrals, may lessen the burden COVID-19 has Scheinemann, K., Gilleland Marchak, J., & Michel, G, &
on the childhood cancer survivor community. IGHG psychological late effects group. (2020).
Recommendations for the surveillance of cancer-related
Conflicts of interest: None declared. fatigue in childhood, adolescent, and young adult cancer
survivors: A report from the International Late Effects of
Data Availability Childhood Cancer Guideline Harmonization Group.
Journal of Cancer Survivorship, 14, 923–938. 10.1007/
The data that support the findings of this project are s11764-020-00904-9
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available from the author upon reasonable request. Creswell, J. W. (2015). A concise introduction to mixed
methods research. Sage publishing.
Drane, C. F., Vernon, L., & O’Shea, S. (2020). Vulnerable
Acknowledgments
learners in the age of COVID-19: A scoping review.
The authors would like to thank the parents and stakehold- Australian Educational Researcher, 48, 1–20. 10.1007/
ers participating in the Patient-Centered Outcomes Research s13384-020-00409-5
Institute (PCORI)-funded engagement project for their Esposito, S., & Principi, N. (2021). Debates around the role
expertise. of school closures in the coronavirus 2019 pandemic—re-
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