This case report describes the distinct value of occupational therapy services in the treatment of a pediatric patient with coronavirus disease 2019 (COVID-19) and multisystem inflammatory syndrome in children in an acute care setting. Practice-based evidence was used to design the treatment plan for this patient throughout the course of his hospital stay. Interventions addressed range of motion, strength, functional endurance, activities of daily living (ADLs), instrumental activities of daily living (IADLs), and functional cognition. Occupational therapy goals focused on the progression toward return to baseline functioning and participation in ADLs and IADLs.
The unprecedented coronavirus disease 2019 (COVID-19) pandemic has presented occupational therapy practitioners with new challenges, barriers, and opportunities for growth. Occupational therapy practitioners use evidence to inform and improve treatment approaches (Copley & Allen, 2009). However, the novelty of this disease and the limited available literature have required practitioners to rely heavily on practice-based evidence, including knowledge of the positive outcomes of early mobility and experience with acute respiratory distress syndrome, to guide treatment of patients with COVID-19 in the intensive care unit (ICU; Ridgeway et al., 2020; Zwarenstein et al., 2009).
As of January 2021, approximately 10% of cases reported in the United States were pediatric cases (Centers for Disease Control and Prevention, 2021). Approximately 1 in 3 children hospitalized with symptomatic COVID-19 were admitted to the ICU (Kim et al., 2020). Although the presentation of COVID-19 in pediatric patients varies greatly, some common symptoms are fever, cough, congestion, sore throat, shortness of breath, gastrointestinal symptoms, and poor appetite in children or poor feeding in infants (Girona-Alarcon et al., 2021). Some children hospitalized with COVID-19 have experienced respiratory failure, septic shock, acute renal failure, multiorgan system failure, and myocarditis (Girona-Alarcon et al., 2021; Kim et al., 2020).
COVID-19 in pediatric patients has also resulted in a combination of sequelae known as multisystem inflammatory syndrome in children (MIS–C). MIS–C typically affects previously healthy children ages 6 to 12 yr (Dufort et al., 2020; Radia et al., 2021). Recent studies have revealed a higher incidence of MIS–C in boys and in Black and Hispanic children (Dufort et al., 2020; Feldstein et al., 2021; Radia et al., 2021). Children with MIS–C have COVID-19 antibodies or a positive polymerase chain reaction test along with a severe inflammatory response that may include fever, rash, shock, coagulopathy, gastrointestinal symptoms, and cardiovascular dysfunction (Dufort et al., 2020; Feldstein et al., 2021; Radia et al., 2021). Cardiovascular dysfunction can include myocardial dysfunction, pericarditis, or coronary abnormalities. Because of the severity of this inflammatory response, most children require an ICU admission with mechanical ventilation (Radia et al., 2021). Clinically, activity restrictions are imposed because of the incidence of hypotension, tachycardia, and tachypnea and the risk of sudden cardiac death (Ng et al., 2020; Radia et al., 2021).
Although the pediatric population has required fewer hospitalizations than the adult population, the pandemic has placed novel burdens on children and their families (Girona-Alarcon et al., 2021) that have had to be considered in providing therapeutic interventions. Families of children admitted to the hospital have had to navigate evolving obstacles such as strict visitor restrictions, the need for virtual appointments, personal protective equipment changes, and limited access to ancillary services (Cannoy et al., 2020). For this case report, we focus on identifying and highlighting the distinct value of occupational therapy in the treatment of a pediatric patient with COVID-19 and MIS–C in an acute care hospital setting. This case study was completed in accordance with our institution’s policy and did not require institutional review board review.
Andy is a 14-yr-old male adolescent with a medical history of asthma. Before his hospital admission, Andy was in ninth grade and attended in-person school. He lived with his biological parents, was independent with all daily self-care activities, and assisted with chores in his home. He was an active member of the football and wrestling teams and enjoyed weightlifting and spending time with his friends outdoors.
Andy was admitted to the hospital on the infectious disease service with fever, diarrhea, and left neck swelling. He tested positive for severe acute respiratory syndrome coronavirus 2 infection, and he was diagnosed with severe MIS–C (Code M35.81 in the International Statistical Classification of Diseases and Related Health Problems [2nd ed., 10th rev.]; World Health Organization, 2004). He subsequently developed hypoxemia followed by cardiac dysfunction, necessitating transfer to the pediatric intensive care unit (PICU). After acute decompensation and respiratory failure, Andy was orally intubated and started on vasopressors and a paralytic. Continuous renal replacement therapy was initiated, and he was eventually treated with intravenous immunoglobulin treatment, anakinra, and steroids. Automatic occupational therapy and physical therapy consults were placed on his admission to the PICU.
Occupational Therapy Evaluation
The initial occupational therapy evaluation was completed 48 hr after Andy’s transfer to the PICU and was limited because of his tenuous medical status. The evaluation consisted of passive range of motion (PROM) assessment, analysis of positioning in bed, and completion of an occupational profile (American Occupational Therapy Association [AOTA], 2021) based on an interview with his parents. The occupational profile was used to establish Andy’s functional baseline before admission to the hospital and to set his long-term occupational therapy goals.
Several outcome measures were also completed at his initial evaluation that would then be repeated throughout Andy’s hospitalization to guide interventions and track functional progress. These measures were the Richmond Agitation–Sedation Scale (RASS; Simeone et al., 2018), the Cornell Assessment of Pediatric Delirium (CAPD; Traube et al., 2014), and the Activity Measure for Post-Acute Care (AM-PAC) Daily Activity Short Forms (Boston University, School of Public Health, Healthy and Disability Research Institute, 2019).
The RASS is a 10-point scale to assess consciousness and agitation in ICU patients (Simeone et al., 2018). The use of the RASS to assess sedation and agitation in critically ill children has been shown to be both valid and reliable (Kerson et al., 2016; Kihlstrom et al., 2018). A score of 0 indicates a alert and calm state. Negative scores indicate decreasing levels of arousal from –1 (drowsy) to –5 (unarousable). Positive scores indicate increasing agitation from +1 (restless) to +4 (combative; Sessler et al., 2002; Simeone et al., 2018). At the beginning of his PICU admission, Andy was given a score of –5 (unarousable) because of a high level of sedation and paralytic drug administration. As his PICU course progressed, his respiratory status improved and he was weaned off sedation, and he was given a score of –2 (light sedation; Table 1).
The CAPD is used to assess delirium in pediatric patients and is first scored 48 hr after ICU admission and then every subsequent 12 hr thereafter by the patient’s ICU nurse (Traube et al., 2014). Occupational therapy practitioners can use the CAPD score to guide treatment recommendations. A CAPD score ≥9 indicates delirium, and pharmacological intervention would be initiated through the hospital’s PICU delirium pathway. For patients with scores <9, nonpharmacological delirium prevention strategies are used, such as promoting early mobility, optimizing the patient’s orientation, and establishing a daily schedule. A patient with a score <9 is not diagnosed with delirium; however, the treatment team will initiate delirium prevention strategies. Andy’s CAPD scores began at 8 and rose to 10 after 1 wk in the PICU (see Table 1). These scores indicated to his medical team that he required both pharmacological and nonpharmacological interventions to treat his mixed delirium.
The AM-PAC Daily Activity Short Forms were used to assess the amount of assistance Andy needed to perform six basic activities of daily living (ADLs) and instrumental activities of daily living (IADLs). The assessment is based on patient or caregiver report and observation of the patient. Scores range from 1, indicating the patient is unable to complete the task or requires total assistance, to 4, indicating independence in the task. Raw scores are converted to standardized scores and percentage of functional limitation. The AM-PAC Daily Activity Short Form has been validated and shown reliable only in the adult population, but it was used with this client because no ADL measures were available for critically ill children with baseline independence before being hospitalized (Boston University, 2019). On initial evaluation, Andy’s score was 6 because he required total assistance to complete all activities, including ADLs, because of his medical instability, level of sedation, and use of paralytic medications (Table 2).
During the initial evaluation, the occupational therapist explained their role and used the process to build trust and rapport with Andy’s parents. The therapist identified several supporting and inhibiting environmental context factors. Andy had many supporting factors, including his caregivers (parents) at his bedside, his caregivers’ willingness to adhere to therapy recommendations and motivation to support Andy through rehabilitation, and the support of an established early mobilization program in the PICU. However, his ability to participate in occupations was limited by medical instability, medical devices and lines, paralytics, and the level of respiratory support required to maintain appropriate stability. The cardiology team prescribed the following activity restrictions, which were a limiting factor both during his PICU stay and after discharge:
Maintain heart rate of <150 beats per min during mobility
Stop mobility if heart rate increases more than 20 beats per min from baseline resting heart rate
Facilitate low-level strengthening and endurance for function, but only to enable completion of ADLs at home
Do not provide in resistance training activities.
Additionally, many of the ancillary services (psychology, therapeutic recreation, massage therapy, and child life) that Andy would have received during his stay either were not available or were completed via telehealth to limit exposure and decrease the risk of transmission. These restrictions further limited the psychosocial supports available to Andy and his family.
Occupational Therapy Goals
Andy’s diagnosis and medical instability prevented his ability to function at his baseline level of participation in ADLs, IADLs, functional mobility, communication with caregivers and staff, and appropriate sleep hygiene and routines. Andy’s family identified several occupation-based goals for his stay in the PICU. These goals were centered on return to participation in school and sports, independence with ADLs, and independence with functional transfers and bed mobility while maintaining activity restrictions. As Andy’s medical status began to stabilize, he became actively involved in modifying and updating his occupation-based goals.
Occupational Therapy Intervention in the Pediatric Intensive Care Unit
Occupational therapy services were provided 5 times per week during Andy’s PICU stay. As he progressed, his goals were consistently reassessed, and interventions were modified on the basis of his performance and feedback from his occupational therapist. Andy’s occupational therapy treatment initially focused on range of motion (ROM) and positioning and then progressed to establishing daily routines to maximize his participation in occupations. The occupational therapist provided education to Andy’s family and hospital staff to implement therapy strategies throughout the day and outside of therapy sessions.
Range of Motion, Strength, and Functional Endurance
Maintenance of ROM and positioning were major areas of focus while Andy was medically paralyzed. Andy received PROM to all medically available joints at least once daily by his therapy team. Andy’s occupational therapist used therapeutic use of self when considering the family’s goals and taught his parents to complete PROM safely outside of therapy sessions; this allowed his parents to become involved in his care and participate in daily activities with Andy while building trust and rapport with the occupational therapist. The occupational therapist provided Andy with prefabricated resting hand splints and pressure relief ankle–foot orthoses to maintain neutral and functional positions of his bilateral upper and lower extremities with the goal of preventing contractures or deformity. As Andy’s medical condition stabilized and he was able to actively participate in treatment, his occupational therapist was able to shift the focus of interventions to active and active-assisted ROM, as well as against-gravity movements, to improve his functional strength with the goal of decreasing the assistance he needed with self-care activities.
ADLs and IADLs
Andy’s parents identified independent completion of ADLs as a major goal for him before discharge. While Andy remained medically unstable in the PICU, he was dependent for most of his ADLs. As sedation was weaned and his medical status improved, he began to engage in basic bed mobility activities and progressed toward out-of-bed mobility. Andy initially required maximum assistance to transition from supine to sitting at the edge of the bed and then eventually completed a stand-pivot transfer to the chair with moderate assistance. While seated in the chair and at the edge of the bed, Andy’s occupational therapist encouraged him to participate in basic ADLs.
Andy’s occupational therapist used clinical reasoning and close observation of Andy’s vital signs to grade ADL-focused treatment sessions appropriately throughout his stay. The therapist provided Andy and his family with strategies and training (e.g., use of a gait belt, energy conservation education, use of adaptive equipment) to effectively and safely participate in ADLs and improve his independence during and outside of therapy sessions. This training was initiated in the PICU with bed-level activities.
Andy was diagnosed with mixed delirium in the PICU. He presented with a disturbed sleep–wake cycle, diminished functional cognition, decreased level of alertness, and increased agitation. Andy’s occupational therapist provided extensive education to his parents and the PICU staff regarding reorientation strategies (e.g., reminders of his location and surroundings, reassurance that he was safe). In addition, the occupational therapist encouraged staff to limit visual and auditory stimuli while Andy was asleep and to maximize his time awake during the day.
While intubated and alert, Andy was provided with a whiteboard and marker and familiar items (e.g., blanket from home, photos of family and friends, his cellphone) to improve his orientation and communication with parents and providers. Parents and staff were encouraged to identify a schedule for lights off and on during the day to improve Andy’s sleep hygiene and global orientation. These recommendations allowed the occupational therapist to form a meaningful relationship with both Andy and his parents by encouraging improved communication, self-advocacy, and engagement with caregivers and staff. Once appropriate, the therapist encouraged him to transfer to his recliner for all mealtimes and to limit screen time before and during sleep cycles to allow for restful sleep participation.
Occupational Therapy Intervention in the Step-Down Unit
Andy remained intubated in the PICU for 2 wk. After extubation and de-escalation of oxygen requirements, he was transferred to a step-down cardiac unit. At the time of transfer out of the PICU, his RASS score was 0, alert and calm, and his CAPD score was 2, indicating that his delirium had resolved. The progression of Andy’s RASS scores correlated with that of his CAPD scores, as outlined in Table 1. These improvements allowed Andy’s occupational therapist to address other identified deficits limiting his occupational participation. As part of Andy’s general medical course in the step-down cardiac unit, he transitioned from total parenteral nutrition to trophic feeds and eventually progressed to oral feeds. He experienced hypertension and tachycardia requiring ongoing monitoring of his cardiac function. Urine output gradually increased, and his acute kidney failure resolved by the time he was discharged from the hospital.
Range of Motion, Strength, and Functional Endurance
When Andy arrived at the step-down unit, his occupational therapist created a written exercise program for him to complete outside of therapy sessions. This exercise program included upper extremity, trunk, and cervical stretches to focus on regaining joint mobility in preparation for functional tasks. This program complemented the lower body and balance exercises provided by the physical therapy team. Emphasis was also placed on postural strengthening exercises to improve chest wall mobility, diaphragmatic strengthening, and upright tolerance in preparation for Andy’s return to school. Staff and family monitored his heart rate, respiratory rate, oxygen saturation, and hemodynamic stability throughout sessions to ensure his safety and adherence to activity restrictions.
ADLs and IADLs
When he transferred to the step-down unit, Andy still required maximum assistance for dressing, toileting, and bathing activities because of his resolving delirium, generalized weakness, and low endurance. He used a bedside commode and tub transfer bench while in the hospital. Andy’s occupational therapist educated his parents on safe transfers and techniques to assist him with ADLs outside of therapy sessions. During his occupational therapy sessions, Andy also participated in functional tasks in his room to simulate household chores. For example, he practiced folding linens, reaching into overhead cabinets, and retrieving items from ground level while standing to improve his dynamic balance and ensure safety with simulated IADLs.
Andy and his parents were taught how to use energy conservation strategies during functional mobility and ADLs to maintain his heart rate within the parameters set by his cardiologist. They also learned how to rate his perceived level of exertion during activities and to identify when he needed to take rest breaks. This treatment intervention addressed Andy’s ongoing health management to facilitate his safe discharge home. At the time of discharge, Andy was completing ADLs with modified independence, intermittent supervision from caregivers, and the use of adaptive equipment. His AM-PAC raw scores increased from 6 on admission to 13 on transfer to the step-down unit and finally to 21 at discharge (see Table 2). These scores indicated that Andy’s independence with ADLs had improved throughout his inpatient course of treatment.
As Andy’s functional cognition improved, he engaged in higher-level cognitive tasks such as sequencing activities and games that require problem solving, memory, and multistep decision making. For example, board and video games Andy said he enjoyed playing before his hospitalization were used in treatment, often with Andy in standing or sitting position. In one session, Andy was tasked with teaching the occupational therapist how to play one of his preferred board games. The purpose of this activity was multifocal: To participate, Andy had to simultaneously attend to the game and to his level of fatigue and work of breathing so that he demonstrated understanding of his activity restrictions. Through these activities, Andy worked toward increasing his physical strength and endurance, challenging his cognition and memory, and learning to advocate for himself when he needed to rest or incorporate energy conservation strategies.
To address Andy’s sequencing in the context of his ADL participation, he worked with the occupational therapist to recall his morning dressing routine. Andy and the therapist then modified this routine to allow him to participate in dressing and personal hygiene activities within his hospital room while integrating different energy conservation strategies so that he maintained his activity restrictions. These interventions focused on Andy’s engagement in meaningful occupations and progression toward return to participation in school and higher-level learning activities. Andy was encouraged to continue to follow the established daily routine to maximize his participation in therapy during the day and to promote good sleep hygiene.
Outcomes and Discharge Planning
Andy met most of his goals and returned to a safe functional status at discharge. He was able to complete ADLs with modified independence, intermittent supervision, and the use of assistive devices. He was able to complete basic bed mobility, functional transfers, and short-distance functional mobility with independence and cues to follow activity restrictions. Andy also met his functional endurance goal to be able to participate in online schooling after discharge, although he was not able to participate in in-person school because he still tested positive for COVID-19. Andy was not yet medically cleared for return to sports.
Andy’s occupational therapist provided discharge recommendations to maximize his independence with ADLs and IADLs and maintain safety in the home. Use of a tub transfer bench and bedside commode, installation of shower grab bars, and the use of a removable shower head were recommended to optimize his safety during ADLs. Andy and his family learned energy conservation techniques (i.e., providing adequate time to complete daily routines and allowing seated rest breaks during standing-level activities) and home modifications (i.e., removal of rugs, addition of nonslip pads in the bathroom, and use of the bedroom on the first floor) to minimize unnecessary exertion, maintain activity guidelines, and ensure a safe environment. Andy’s occupational therapist created an individualized home exercise program that outlined ROM stretches and strengthening within the context of functional tasks (i.e., no resistance). The acute care team, including the occupational therapist, recommended that a caregiver remain present at home with Andy to ensure his safety during mobility and ADLs. Andy was not referred to outpatient occupational therapy at this time because he was not yet medically cleared for additional activity.
Andy’s occupational therapy treatment course throughout his acute admission for MIS–C secondary to COVID-19 illustrates the distinct value of occupational therapy and the importance of family-centered care. Family-centered care and therapeutic use of self are key to treatment for the pediatric population. To provide client-centered care, both the pediatric patient and their family must be considered core members of the treatment team. Along with family-centered care, pediatric acute care practitioners often use the Occupational Adaptation Model (Schkade & Schultz, 1992; Schultz & Schkade, 1992) and the Person–Environment–Occupation Model (Law et al., 1996) as overarching frameworks and incorporate additional models and frames of reference (e.g., biomechanics, cognitive, developmental) as needed. Use of these models guides pediatric occupational therapy practitioners to identify client- and family-centered goals while addressing the relationship among the person, the environment, and the occupation to ascertain how performance shapes the mastery or adaptation necessary to participate in meaningful occupations. Through the lens of these models, Andy’s occupational therapist chose interventions and designed treatment sessions that enabled him to meet his goals by the time he was discharged from the hospital.
Although Andy’s occupational therapist used principles of family-centered care to guide his therapy course, his hospital stay was affected by the infection control precautions put in place to protect him, his family, and his medical providers from COVID-19. Andy was allowed two specified caregivers at his bedside during his inpatient stay, but he was not permitted to leave his room, his identified caregivers could not change, and they were permitted to leave the room only if they were leaving the hospital or going for their daily symptom check. Because of visitor restrictions, Andy had limited support from his extended family and friends; as a result, it was up to Andy’s treatment team to provide the support and encouragement he needed and to decrease his sense of isolation. His caregivers were also isolated from their social supports in order to follow infection control guidelines. Moreover, his caregivers experienced challenges in other areas of occupation, such as caring for their other children at home and managing work–life demands. All of these considerations are critical during treatment and transition planning, service delivery, and discharge recommendations.
Throughout the occupational therapy process, one of the roles of the practitioner is to understand the “complex and dynamic interaction among the demands of the occupation and the client’s contexts, performance patterns, performance skills, and client factors” (AOTA, 2020, p. 18). In the unprecedented circumstances of the COVID-19 pandemic, it is imperative for occupational therapy practitioners to use therapeutic use of self to create a space for authenticity in an environment that is limited to the four walls of the hospital room. Andy and his occupational therapist worked together to identify activities he could complete in his room that were meaningful and addressed his ability to participate in his occupations. This was effective in his case because of the trust and rapport that he and his family had with his occupational therapist. His therapist’s therapeutic use of self and other cornerstones of occupational therapy practice enabled Andy to engage in meaningful occupations and adapt to the environmental demands that were placed on him and his family until his transition home (AOTA, 2020).
Implications for Occupational Therapy Practice
This case report has the following implications for occupational therapy practice:
Occupational therapy practitioners have a role in delirium prevention in the ICU.
Occupational therapy practitioners have a role in early mobility of pediatric clients recovering from COVID-19 while admitted to the hospital.
Early facilitation of occupational participation will help facilitate a safe discharge to home for pediatric clients.
COVID-19 and associated MIS–C leave pediatric patients with significant functional limitations that affect their ability to participate in all occupations.
Long-term impacts of COVID-19 and MIS–C in the pediatric population are unknown, and occupational therapy practitioners should screen for ongoing deficits after hospitalization.
Occupational therapy practitioners play a distinct role in facilitating a safe return to function for pediatric patients with COVID-19 and MIS–C during their inpatient hospital stay. Practitioners analyze occupations and associated activities while considering the unique situation of the client. In addition, they play a key role in providing delirium education to families and staff, addressing functional cognition, and limiting psychosocial impacts on pediatric patients and their caregivers to facilitate increased participation in occupational performance. The occupational therapy process is fluid and dynamic, allowing the treatment plan to evolve while maintaining focus on client goals (AOTA, 2020). Limited evidence is available surrounding best practice principles for occupational therapy evaluation and treatment of pediatric patients with COVID-19 and MIS–C in hospital settings, warranting additional case reports and future research studies.
We thank Susan Cahill and Deborah Lieberman for their support in the editing of this case report.