Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States

Joshi, Divya; Hill, Nayo M.; Hruby, Alexandra; Viswanathan, Shreya; Ingo, Carson; Roth, Heidi; Sukal-Moulton, Theresa

doi:10.1016/j.apmr.2021.02.017

Cited by 3 publications

(4 citation statements)

References 22 publications

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“…Respondent demographics are listed in Table 1 . The survey population closely matches US census data in terms of sex, ethnicity, and race [ 14 – 16 ]. The majority of participants reported no previous research experience (53.9%), a proximity to medical appointments of 1 hour or less (75.1%), and previous or ongoing physical/occupational therapy treatment for their arms (53.2%) or legs (65.7%).…”

Section: Resultsmentioning

confidence: 81%

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Motivators and barriers to research participation for individuals with cerebral palsy and their families

et al. 2022

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Objective(s) Our objective was to investigate the motivators and barriers associated with the individual or family decision to participate in cerebral palsy research. Based on this information, we offer suggestions to increase the likelihood of participation in future CP studies. Methods A digital survey was administered to stakeholders affected by cerebral palsy across the US. Our analysis focused on variables related to personal interests, travel, and study-specific elements. Statistical tests investigated the effects of responder type, cerebral palsy type, and Gross Motor Function Classification System level on travel and study-specific element variables. Recommendations were informed by responses reflecting the majority of respondents. Results Based on 233 responses, we found that respondents highly valued research participation (on average 88.2/100) and compensation (on average 62.3/100). Motivators included the potential for direct benefit (62.2%) and helping others (53.4%). The primary barriers to participation were schedule limitations (48.9%) and travel logistics (32.6%). Schedule limitations were especially pertinent to caregivers, while individuals with more severe cerebral palsy diagnoses reported the necessity of additional items to comfortably travel. Conclusions Overall, we encourage the involvement of stakeholders affected by cerebral palsy in the research process. Researchers should consider offering flexible study times, accommodating locations, and compensation for time and travel expenses. We recommend a minimum compensation of $15/hour and a maximum time commitment of 4 hours/day to respect participants’ time and increase likelihood of research participation. Future studies should track how attitudes toward research change with time and experience.

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Section: Resultsmentioning

confidence: 81%

“…The present analysis focused on the first four categories to summarize attitudes towards general CP research. Details of the survey development are described in further detail by Joshi et al [ 14 ].…”

Section: Methodsmentioning

confidence: 99%

Motivators and barriers to research participation for individuals with cerebral palsy and their families

et al. 2022

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“…Respondent demographics are listed in Table 1. The survey population closely matches US census data in terms of sex, ethnicity, and race [13][14][15]. The majority of participants reported no previous research experience (53.9%), a proximity to medical appointments of 1 hour or less (75.1%), and previous or ongoing physical/occupational therapy treatment for their arms (53.2%) or legs (65.7%).…”

Section: Demographicsmentioning

confidence: 72%

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confidence: 99%

Motivators and barriers to research participation for individuals with cerebral palsy and their families

Zvolanek

Goyal

Hruby

et al. 2021

Preprint

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Objective(s): Our objective was to investigate the motivators and barriers associated with the individual or family decision to participate in cerebral palsy research. Based on this information, we offer suggestions to increase the likelihood of participation in future CP studies. Methods: A digital survey was administered to stakeholders affected by cerebral palsy across the US. Our analysis focused on variables related to personal interests, travel, and study-specific elements. Statistical tests investigated the effects of responder type, cerebral palsy type, and Gross Motor Function Classification System level on travel and study-specific element variables. Recommendations were informed by responses reflecting the majority of respondents. Results: Based on 233 responses, we found that respondents highly valued research participation (on average 88.2/100) and compensation (on average 62.3/100). Motivators included the potential for direct benefit (62.2%) and helping others (53.4%). The primary barriers to participation were schedule limitations (48.9%) and travel logistics (32.6%). Schedule limitations were especially pertinent to caregivers, while individuals with more severe cerebral palsy diagnoses reported the necessity of additional items to comfortably travel. Conclusions: Overall, we encourage the involvement of stakeholders affected by cerebral palsy in the research process. Researchers should consider offering flexible study times, accommodating locations, and compensation for time and travel expenses. We recommend a minimum compensation of $15/hour and a maximum time commitment of 4 hours/day to respect participants' time and increase likelihood of research participation. Future studies should track how attitudes toward research change with time and experience.

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Impact of the COVID-19 pandemic on the research activities of UK ophthalmologists

Hogg

Low²,

Self³

et al. 2022

Eye

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Background The COVID-19 pandemic has impacted negatively on many areas of biomedical research and there is concern that academic recovery will take several years. This survey aimed to define the impact of the COVID-19 pandemic on UK ophthalmologists’ research activities and understand the implications for recovery. Methods An online survey comprising multiple choice and free-text questions was designed, piloted and then distributed to Royal College of Ophthalmologists (RCOphth) members in January 2021. Respondent characteristics, research expectations and experiences through the pandemic were captured. Descriptive and comparative statistics were applied to quantitative data alongside content analysis of qualitative data. Results In total, 148 respondents (3.7% of RCOphth membership) comprised 46 trainees (31.1%), 97 consultants (65.5%) and 5 SAS doctors (3.4%); 54 had clinical-academic roles (36.5%) and 65/94 (69.1%) ophthalmologists with fully clinical posts identified as research-active. Of 114 research-active respondents, 104 (91.2%) reported an impact on their research from COVID-19; negative impacts included loss of research time (n = 69), research delays (n = 96) and funding shortfalls (n = 63). Content analysis identified five common themes; type of research activity, clinical demands, institutional challenges, COVID-19 alignment and work-life balance. Conclusions UK ophthalmology research has been adversely impacted by the pandemic. A substantial proportion of UK ophthalmologists are research active, but 20.4% of those surveyed felt that the pandemic had made research less attractive. Strategic steps must be taken to nurture UK ophthalmologists’ engagement with research, especially for those who currently do no research, if the profession is to align itself with the Government vision of ‘Research for All’.

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Stakeholder Perspectives on Engaging With Cerebral Palsy Research Studies After Onset of COVID-19 in the United States

Cited by 3 publications

References 22 publications

Motivators and barriers to research participation for individuals with cerebral palsy and their families

Motivators and barriers to research participation for individuals with cerebral palsy and their families

Motivators and barriers to research participation for individuals with cerebral palsy and their families

Impact of the COVID-19 pandemic on the research activities of UK ophthalmologists

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