Investigators concluded that feedback from patients and caregivers should be incorporated as telehealth continues to be integrated into daily clinical care.
Children with motor impairment experienced interrupted access to rehabilitation therapies during the COVID-19 pandemic, with those reporting fewer interventions also showing lower satisfaction with treatment delivery, higher rates of decline in mobility, and increased caregiver stress. With the continued use of telehealth, study investigators propose integrating patient and caregiver feedback to improve outcomes.
A total of 102 caregivers of children with motor impairments, namely cerebral palsy, completed the survey questionnaire, for a response rate of 7% recorded between May 5, 2020, and July 13, 2020. With the onset of COVID-19, most states were under a Stay-at-Home order, but regulations shifted during the recruitment and analysis phases, investigators noted. Responding caregivers were comprised of mothers (89%), fathers (9%), grandmothers (1%), and other (1%).
Investigators found that because of the pandemic there was a significant difference in total therapies received compared with the total prior to COVID-19 (P <.001). There was no correlation in difference in number of therapy hours prepandemic and at the time of the survey (Δhours) with child age (P = .851), presence of Stay-at-Home order (P = .301), or recent change in medical status (P = .283). When considering participant home location—categorized as either urban, suburban, or rural—there was no statistically significant association with the Δhours (P = .049), although the majority of survey respondents were suburban residents (64%).
“This study, completed in rapid response to the COVID-19 pandemic, used caregiver report to determine impact on access to therapies for children with motor impairment as well as the physical and mental health of children and their caregivers,” lead author Ellen N. Sutter, DPT, PhD student, department of rehabilitation medicine, University of Minnesota, et al wrote. “Quantitative findings indicated the extent of the pandemic’s impact among this sample of children with motor impairment and their caregivers. Responses to open-ended survey questions allowed for qualitative analysis of the lived experiences and perspectives of caregivers.”
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Prior to the COVID-19 pandemic, 92 of the 102 children surveyed (90%) were receiving 1 or more therapies. At the time of the survey, 55 patients (54%) were receiving 1 or more therapies. Responders had mixed reactions to therapy satisfaction, with 36% claiming they were “somewhat or very unsatisfied,” 15% “neutral,” and 49% “somewhat or very satisfied.”
A child’s recent change in medical status indicated a significant difference in caregivers’ satisfaction (median = 2, “somewhat unsatisfied”), compared to those that had not (median = 4, “somewhat satisfied”; P = .204). When considering correlation between Δhours and caregiver satisfaction, investigators found a weak, negative correlation (ρ = −0.281; P = 0.044). There was no difference in satisfaction according to child’s age (P = .096), sex (P = .204), home location (P = .081), or a reported Stay-at-Home order in their home location (P = .759).
Patients who received less therapy during the pandemic more often reported an overall lower satisfaction with the way treatment was delivered (P <.001), a decline in mobility/movement-related skills (P = .001), greater, negative burden for caregivers (P = .015), increased child stress and anxiety (P = .037), and increased caregiver stress and anxiety (P = .004). Despite this, 17% of caregivers did acknowledge positive aspects of their experience during the pandemic within the open-ended portion of the survey.
During the pandemic, participants reported receiving therapy via video call (76%), in-person at therapy centers (22%), over the phone (16%), email (7%), and at-home visits (5%). A total of 27% of patients reported that they received treatment in differing forms.
Quantitative responses were answered by 96% of participants, and at least 1 of the 3 open-ended qualitative questions pertaining to the experience of caregiving were answered by 92% of participants. Both quantitative and qualitative responses were grouped into 3 topics: impact on access to therapies, satisfaction with therapies, and impact on child/caregiver well-being.
Limitations included the study’s quick response to the COVID-19 pandemic, meaning investigators were unable to provide as much information related to demographics and treatment characteristics. Responses were also limited to the caregiver’s opinions, with the absence of examination, and Black children/caregivers were underrepresented. Recall bias may have also been present as data was collected once, and may not be representative of all children, as the study pool was limited to the Midwest United States.
“The long-term consequences of decreased access to rehabilitation therapies are unknown, but it is clear that rehabilitation providers must act, with the input and feedback of children and caregivers, to be responsive to the experience of families during the COVID-19 pandemic and to optimize healthcare systems for future access challenges,” Sutter et al wrote. “Despite the challenges presented during the pandemic, the study findings affirm the value of rehabilitation therapies to children and their families and present an opportunity to improve delivery of remote care and support.”