Global COVID-19 childhood disability data coordination: A collaborative initiative of the International Alliance of Academies of Childhood Disability

2.1Study team

A descriptive environmental scan of surveys was conducted. The multicultural, international, and interdisciplinary Survey subgroup consisted of representatives of seven academies of childhood disabilities as follows: American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), European Academy of Childhood Disability (EACD), Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM), Southern African Academy of Childhood Disability (SA-ChilD), Latin American Academy of Child Development and Disability (ALDID), Eastern African Academy of Childhood Disability (EAACD), and the Chinese Academy of Childhood Disability. The study team consisted of seven professionals and one trainee working in the field of childhood disability. Four members have medical backgrounds (two developmental pediatricians and two pediatricians), and four have physical and/or occupational therapy backgrounds. Five members conduct clinical and research activities, one is fully dedicated to research, the remaining two are clinicians. In addition, the team collaborated with people with disabilities and disability organizations in different countries to disseminate the initiative.

2.2Multi-step process: Quantitative and qualitative approaches

Overall, the purpose of this international initiative was to facilitate accessing and sharing information collected by surveys addressing the impact of COVID-19 on people experiencing a disability globally. Specifically, surveys were sought asking their respondents – individuals with a disability, caregivers, and/or professionals - to report directly on their own thoughts, feelings, and behaviours regarding the impact of COVID-19.

To answer the guiding research question, a mixed method study design was used, combining qualitative and quantitative research components [13]. The purpose of this sequential design was to complement the results from one method with the results from the other method. Overall, the theoretical drive was exploration-and-description, where the core component was the qualitative thematic analysis [14], and the quantitative component was supplemental.

A multi-step process was followed. Firstly, an inventory was started of surveys either under development, launched and in process, or already completed worldwide related to the impact of COVID-19 on people living with a disability and their families. Members of all the academies who collaborated with the IAACD were engaged to invite their members to share information regarding ongoing or completed surveys. To consider a survey for inclusion, a survey data collection form was posted on the IAACD COVID-19 Task Force website and survey developers were asked to complete the form. In this form (available as supplemental material S1), survey developers provided information such as the purpose and content of the surveys, a link to published results, and/or described ongoing or key findings. This call for surveys was disseminated using email distribution lists, social networking channels, and academic letters in different languages, including English, Spanish, Portuguese, and Chinese (Global COVID-19 Childhood Disability Data Coordination – IAACD). The collaboration of all Communication Committees of each participating academy was also sought to disseminate this initiative. Additionally, disability organizations in different countries were contacted, as well as the International Alliance of Disability and shared the call for surveys. Surveys that were not related to COVID-19 and disability were excluded. Surveys were collected from June 15th, 2020, to November 30th, 2020.

As surveys considered in this project were publicly available data, the study did not require Institutional Review Board review.

Secondly, to facilitate access to ongoing results, an open access Surveys repository was created, where surveys were sorted into ongoing and completed. When available, final reports and key findings of completed surveys were posted.

Thirdly, the content of each final report and/or key findings of completed surveys were reviewed and compared. To identify common themes and gaps, the CRC [10] and the ICF [12] frameworks were used.

2.3Mapping exercise

A mixed method inductive/deductive thematic analysis was used. Theme development was directed by the content of the data, specifically, the thematic analysis. Mapping methodology included the following steps: 1) Inductive analysis: Identifying the main themes described in the key findings of the survey, 2) Inductive analysis: Assigning the CRC article that best describes the theme, and 3) Deductive analysis: Assigning the ICF component that best describes the theme.

As a practice trial, each member of the team completed an independent mapping exercise, which included applying the proposed steps to the same survey. Following this exercise, the methodology was revised to improve clarity and practicality of the identification of themes. Specifically, to facilitate the identification of themes included in step 1, three raters (VS, AC, IS) identified from reading the full material a core list of themes that the remaining group members used as a guideline for their mapping exercise. This step was necessary to facilitate reliability. However, if raters identified additional themes based on their assigned reports, they could add those themes to the proposed core list of themes. In the mapping exercise, raters’ agreement against a the most experienced coder (VS) ranged from 66% to 93% for CRC items and from 87% to 100% for ICF. Disagreements were resolved by consensus during virtual working group meetings. Overall, the content of each survey was mapped out by two coders. The group meetings were also used for discussions about the meaning of the results, identification of gaps, and future directions.

Lastly, an essential part of the project was continuous dissemination of results. The Surveys page was updated on a weekly basis. Furthermore, monthly ‘Flash News’ were created, highlighting findings of completed surveys as well as promoting participation in ongoing surveys. (Supplemental Material S1)

3.1Objective 1 to facilitate knowledge sharing about the impact of COVID-19 on disability globally - based on surveys data

From June to November 2020, the task force coordinated the participation and sharing of information collected using surveys around the world. Forty-nine surveys describing the impact of COVID-19 on people living with disabilities were identified. The completed surveys gathered information from 17,230 participants representing all continents. Detailed information about the distribution of respondents by regions of the world can be accessed in Supplemental Material S1. Table 1 shows the general characteristics of ongoing and completed surveys. Of note, only the content of 25 out of 49 surveys were created with active collaboration of people with disabilities.

Figure 1 shows a representation of ongoing and completed surveys by regions of the world, as proposed by the WHO. Most surveys collected data representing The Americas, including North and South America, European, and Western-Pacific WHO’s health regions. The least represented WHO’s health regions were South-East Asian and African regions. Six of the 49 surveys addressed a global audience. Full distribution by country is shown in Table 1.

Fig. 1

Distribution of ongoing and completed surveys by world health regions.

The surveys varied in terms of target population, with the majority querying caregivers of people with disabilities and professionals working in rehabilitation settings. Caregivers were asked for opinions regarding the impact of COVID-19 on children and youth with disabilities. Healthcare professionals provided their views on aspects such as providing telehealth services (n = 2) and impact of the pandemic on rehabilitation services (n = 2), among others. Only one survey questioned the children directly in a pediatric sample of ages 7 to 10 years with and without disabilities. This was a survey from China with a focus on home programs for children with disabilities (Table 1).

Of the 49 surveys, 29 were constructed in English, followed by 7 in Spanish, 6 in French, 5 in Portuguese, and less than 3 in each of the following languages Chinese, Dutch, and Swahili. Three surveys were offered in multiple languages. (Table 1).

3.2Purpose and use of collected information

Surveys covered a great variety of purposes including describing and learning about the experience of lockdown due to COVID-19; impact on service provision; satisfaction with remote educational needs; satisfaction with remote support; documented lived experiences of caregivers; the impact of lockdown on children with autism spectrum disorder, brain injury, and/or cerebral palsy; perceived acceptability, effectiveness, and safety of telehealth services; professionals’ perception of delivering remote services, etc. A complete list describing aims and purpose of all surveys can be found on the Surveys subgroup page Global COVID-19 Childhood Disability Data Coordination – IAACD. Detailed information about the surveys can be accessed in Supplemental Material S1.

Regarding the intended use of the data collected, the answers were very broad. In general, survey developers reported variable uses such as: to inform future service provision, support policies, identify needs and priorities, compare impact of lockdown on overall well-being and mental health, identify barriers and facilitators of remote services, learn about COVID-19 response and reintegration of services, provide information for families and people with disabilities, improve response strategies, and inform governments and service providers.

3.3Objective 2 to identify key findings and gaps in knowledge based on content analysis of the surveys, by using the CRC and ICF frameworks

3.3.2Mapping to articles of the CRC

After identifying the themes represented by the findings of the surveys, a rights-based approach was used as a guiding framework to compare the themes with the content of the articles of the CRC. The articles frequently addressed were: Article 23- Children with disabilities have the right to actively participate in the community (n = 14), Article 24- All adults and children should have information about how to stay safe and healthy (n = 50). Article 26- Social and economic help (n = 12), and Article 28- Right to education (n = 12). Values in brackets indicate how many times a theme was related to this article (one survey could mention several themes). A few surveys covered the following CRC articles: Article 31- Right to participate in recreational activities (n = 3), Article 9- Keeping families together (n = 1), and Article 27- Food, clothing, and safe home (n = 1). Figure 2 highlights the description and frequency of distribution of these CRC articles. Specific themes that were not possible to map into CRC articles included: stakeholders’ perspectives, parents’ concerns, and professional education.

Fig. 2

Description of CRC articles covered by the surveys. CRC: United Nations Convention on the Rights of the Child.

3.3.3Mapping to ICF

The themes were also mapped to the ICF components. Using a bio-psychosocial approach, the ICF components that were frequently addressed were: Body functions related to decline in mental health and physical fitness (n = 24 times themes were mapped into this component), Participation related to restrictions in socialization, recreation, education, and family interactions (n = 23), Environmental Factors described both as barriers and facilitators such as access and availability of health services, family support, financial support, caregivers’ health/stress/burden, access to technology, access and availability of special education, access to specific food and essential supplies (n = 101). Personal factors were represented by themes related to personal values, beliefs, and expectations (n = 7). Table 3 shows examples of themes mapped to the CRC and ICF. Figure 3 illustrates the distribution of themes by ICF components, showing that most themes covered by the surveys represented environmental factors (59% of total). Specific themes not matching any ICF component included professionals’ experiences with telehealth, overall physical health, and overall quality of life, among others, were coded as not covered by the ICF and/or non-applicable (n = 17).

Fig. 3

Distribution of themes covered by surveys representing ICF components. Footnote Figure 3: ICF; International Classification of Functioning, Disability and Health.

3.4Gaps in representation of CRC articles and ICF components

Based on their mapping frequency and/or identification by the study group, the following articles of the CRC and domains of the ICF were identified as content gaps: Article 2 – No discrimination, Article 12 – Respect for children’s views, and Article 19 – Protection from violence. In addition, some ICF domains related to Participation and Environmental factors were underrepresented by the surveys, as follows: lack of themes related to impact of lockdown on immediate family members beyond parents/carers (e.g., siblings); active involvement of people with disabilities or family members in planning and participating in inclusive emergency response; preferences regarding communication or sharing of information regarding COVID-19; challenges using digital information to express their needs; social attitudes and support from immediate community members (e.g., neighbours); affordability of medications; accessibility of emergency centers (e.g., discrimination).

3.5Objective 3 to describe lessons learned and highlight useful strategies for future health emergencies

4.1Importance of ongoing international collaboration

This project created an open-access platform summarizing meaningful information and connecting colleagues and families from different regions of the world. By creating a repository of ongoing and completed surveys and comparing the survey content, collaboration and coordination of useful information among professionals and individuals with disabilities and their families around the world was enhanced. This initiative was expected to advocate for support for accessing up-to-date information during health emergencies, and conducting and sharing survey studies for the benefit of people with disability globally.

The monthly ‘Flash News’ highlighted common themes identified by the surveys, encouraging colleagues to avoid duplications of efforts by asking the same questions and pointing out gaps in knowledge or methodological weakness. For example, 51% of the surveys were designed with active collaboration of people with disabilities or their families. This shows the need for improvement in the design of surveys, as end-users should participate in the development of questionnaire-collecting information about their experiences, needs, and everyday life. In addition, only one survey collected information directly from children with disabilities. Participatory research models have received increased support in the past few years as they improve the relevance and impact of the results [22]. Thus, it is hoped that more surveys in the future will address children’s opinions by asking children with disability to report on their experiences in a child-friendly manner.

4.2Lessons learned

By comparing the main themes covered by the surveys to the CRC and the ICF, commonalities and gaps in key areas impacting children’s rights and everyday functioning of people with disabilities were identified. Regarding the impact of the pandemic, by mapping the themes to the ICF components, it was identified that the pandemic has impacted functioning across the body functions and participation domains; modifiable environmental barriers and facilitators were relevant in many surveys. Environmental factors have been a major focus of attention, perhaps because of the dramatic changes in people’s lives due to lockdown and social distancing and to concerns raised regarding the impact of these measures in many groups and areas of functioning, especially for those with disabilities [5, 18, 19]. Nevertheless, some contextual aspects have been overlooked, particularly impact on family members other than main caregiver, preferences, attitudes, and supports. Future work should consider addressing the environment more broadly.

Under the CRC framework, several surveys collected information related to many rights of children with and without disabilities, including access to health, education, and social and economic help, which seem to be the more obviously affected areas during the COVID-19 crisis. However, there were some areas that were overlooked, including discrimination, recreation, respect for children’s views, and access to child-friendly information related to COVID-19 and how to stay safe. These are areas that future surveys or initiatives should consider. During a health crisis, the human rights of people with disabilities, specifically children and youths, are impacted [11, 23– 25]. Hence, it is important to adopt a rights-based approach to represent the areas that are frequently affected, and most importantly, those that are overlooked.

4.3Call for actions

Based on the analysis of the frequency of themes and their respective ICF components and CRC articles, it was noted several points where the surveys helped identify a set of actions needed to remediate the impact of COVID-19. For example, need for: accessible information and guidance for disabled people; flexibility and understanding during the transition back to school; flexibility from employers and schools to ensure extended family can provide support; information on accessing essential supplies; and flexibility in lockdown rules to allow support from extended family. Addressing these points would be important to inform policymakers in the future months when further surges of COVID-19 are anticipated.

4.4Positive experiences and positive changes

Many surveys collected positive experiences during the pandemic, such as, satisfaction with remote health services and remote educational programs. Children and families enjoyed spending more quality time together. Parents/caregivers appreciated their children’s abilities as they spent more time together, Some children showed a decrease levels of anxiety and behavioural problems. The use of technology facilitated connections between families and healthcare professionals providing positive support. In consonance with these positive findings, the literature has highlighted the opportunities revealed during the pandemic for professionals working with childhood disability to embrace a more family-centered approach [26], which may be a beneficial legacy from these challenging times.

4.5Limitations

It is important to acknowledge that there may be methodological challenges when mapping content of surveys that have been created for various purposes, such as different sampling strategies, response bias, timing of data collection - different phases of the pandemic in their contexts, etc. It is not possible to know which actions were taken in each area of the globe, so variations in response to the pandemic may therefore account for variability in the results. Another limitation is that, due to underrepresentation of world regions, the content analysis might not represent the needs and the impact of COVID-19 in certain regions, such as South East Asia and Africa. In addition, no data were collected on the methodological quality of the surveys, as the intention was to raise information rapidly to inform future actions. However, there are many benefits of facilitating data coordination and global collaboration, including avoiding duplication of efforts, maximizing resources, rapid dissemination of successful strategies, and planning for future phases of data collection.