Digital inclusion and participation of people with intellectual disabilities during COVID‐19: A rapid review and international bricolage – Chadwick – – Journal of Policy and Practice in Intellectual Disabilities | #education | #technology | #training

A rapid review was conducted to synthesise existing global knowledge surrounding digital inclusion during the COVID-19 pandemic (Khangura et al., 2012). The review was conducted over a short time frame between March and June 2021. Processes typically conducted within a systematic review were simplified by compressing title and abstract search, and omitting risk of bias and article quality evaluation checks. Nonetheless, preferred reporting items for systematic reviews and meta-analyses and assessing the methodological quality of systematic reviews reporting processes were incorporated in line with recommendations (Kelly et al., 2016). No funding supported the conduct of this review. For full details of the search strategy employed in the rapid review, see supplemental materials. Figure 1 details the flowchart for article selection and review.

Data extraction and synthesis

Data synthesis involved reading and tabulating articles extracting findings germane to the review focus (see Supplemental File 1 for summary table of articles). A preliminary framework was developed based on initial meetings by authors to support accelerated organisation of the findings from the studies during data extraction and summary. Article summaries were developed and tabulated by two authors and reviewed by at least two other authors. Once summarised, groups of two authors collaborated to extract and summarise key descriptive and interpretive themes from the findings across the selected studies and drafted findings for inclusion in the paper. For parsimony of presentation, a convention of emboldened italics to indicate subthemes and italics to indicate basic themes which sit under these subthemes was adopted. Drafts were then reviewed and further cross checked with the tabulated summaries and article details by two co-authors.

Summary of included articles

A total of 16 full-text articles were included in the rapid review. Four studies were from the United Kingdom (Datlen et al., 2020; Power et al., 2021; Rawlings et al., 2021; Rothman, 2021); two from Canada (Lake et al., 2021; Lunsky et al., 2021); two from Spain (Amor et al., 2021; Navas et al., 2021); two from the Netherlands (Scheffers et al., 2021; Zaagsma et al., 2020); one from Australia (Masi et al., 2021); one from Ireland (McCausland et al., 2021); and one from the United Sites (Spencer et al., 2021). One study was carried out in Ireland and the Netherlands (Burke et al., 2021); another was carried out mainly in the United States (Jeste et al., 2020) and one was entirely online and therefore not country specific (Araten-Bergman & Shpigelman, 2021). Settings included: education (Burke et al., 2021; Spencer et al., 2021); independent residences and residential services (McCausland et al., 2021; Zaagsma et al., 2020); health care (Lunsky et al., 2021; Masi et al., 2021); education and health services (Jeste et al., 2020); therapeutic settings (Datlen et al., 2020; Lake et al., 2021; Power et al., 2021; Rawlings et al., 2021; Rothman, 2021); and finally a combination of various settings due to surveys being sent out through large organisations (Amor et al., 2021; Navas et al., 2021; Scheffers et al., 2021) or on the Internet (Araten-Bergman & Shpigelman, 2021).

Study design and methods used

A variation of study designs were used in the 16 papers included in the rapid review. Of all 16 papers reviewed, 10 were descriptive (Amor et al., 2021; Araten-Bergman & Shpigelman, 2021; Burke et al., 2021; Jeste et al., 2020; Lunsky et al., 2021; Masi et al., 2021; McCausland et al., 2021; Navas et al., 2021; Rawlings et al., 2021; Scheffers et al., 2021) and had a cross-sectional design, of which three used mixed methods (Lunsky et al., 2021; Navas et al., 2021; Rawlings et al., 2021). All three included open-ended questions that were analysed mainly through qualitative content analysis.

Additionally, of the above 10, one employed a co-creation study design (Burke et al., 2021) and another was a quantitative longitudinal study comparing pre- and post-COVID-19 survey responses (McCausland et al., 2021).

All but one of the cross-sectional studies (Rawlings et al., 2021) used online surveys. The use of on online surveys is likely to exclude those participants without online access. Therefore, only part of the perspectives of the population under study may have been reflected.

One paper gathered retrospective service data about digital service provision (Zaagsma et al., 2020). Qualitative study designs were used in three of the papers (Lake et al., 2021; Power et al., 2021; Spencer et al., 2021), of which, two employed thematic analysis (Lake et al., 2021; Power et al., 2021). Finally, two papers employed case-study methodologies (Datlen et al., 2020; Rothman, 2021).

Study participants

The majority of the studies (n = 11) focused on adults with an ID with ages ranging from 18 to 65+ years old, and three of these included both children and adults (age range: 3–83 years old). In four papers, family members participated to help answer the survey. Numerous additional support needs or diagnoses were identified in five studies (e.g. developmental delay, ASD, Down syndrome, psychiatric diagnosis, sensory impairments, cerebral palsy). The sample size varied from a case study with only one participant to 982 participants. Female participation represented between 44.9% and 85% of the sample in the different studies. Only five studies provided additional demographic background with regard to the housing (i.e. family, own home, and residential settings) and one study regarding participants’ occupation. Three papers recruited support workers or therapists as the primary participants (N range = 105–942), while three studies focused on family caregivers of children and adults with ID.

Findings from the articles in the rapid review

Findings are presented in five themes relating to the first three objectives of this article. Objective 4 is addressed partially in the bricolage and in the discussion and recommendation sections of this article. Theme 1.1 addresses Objective 1; Themes 1.2 and 1.3 address Objective 2; and Themes 1.4 and 1.5 address Objective 3.

Theme 1.1: Use of ICT to gain information about COVID-19

Only three of the included studies investigated how ICT was used by people with ID or those providing support to access information about COVID-19 (e.g. national rates of infection, reducing risk via sanitary measures or vaccination). Navas et al. (2021) presented empirical data on ICT being used to provide information to people with ID. Few had accessed COVID-19 information from the internet and social media (only 4% living in service homes and 12% living in family care). Power et al. (2021) reported that telephone calls were used to check on people’s well-being and provide guidance during COVID-19. Lake et al. (2021) reported on people’s feelings of anxiety due to an inability to access updated and easily understandable COVID-19 information.

Theme 1.2: ICT integration in everyday life during COVID-19

Fourteen papers explored how ICT had been integrated into the lives of people with ID during the COVID-19 pandemic. Technology access and use increased during lockdown (McCausland et al., 2021), particularly the use of videoconferencing software in education (Amor et al., 2021; Jeste et al., 2020; Rawlings et al., 2021; Spencer et al., 2021), in therapy (Datlen et al., 2020; Navas et al., 2021; Power et al., 2021; Rothman, 2021) or to maintain visual social contact (Araten-Bergman & Shpigelman, 2021; McCausland et al., 2021; Scheffers et al., 2021).

Professional carers used diverse and distal means to provide services and supports to stay in touch with people with ID. Participants reported using technology to connect with mental health care providers (e.g. therapists, counsellors) (Lake et al., 2021; Rawlings et al., 2021), or attend at least one video-based medical appointment (Lunsky et al., 2021). Family carers used telehealth services for their child (Masi et al., 2021). Videoconferencing and online whiteboards were also used to provide body movement and dance therapy (Rothman, 2021), as well as art therapy (Navas et al., 2021; Power et al., 2021).

As part of their employment, some people with ID (11.3%) had to adapt to working remotely with others. However, employment challenges were also evident with work disruption (67.5%), restricted working (11.9%) and lay-off (4.2%) reported, though the reasons for these challenges are not elaborated in this article (Amor et al., 2021).

Integration of ICT into education was investigated in three studies. Tele-education (i.e. video and/or e-mail) provided continued services, and only a small proportion of participants did not find tele-education helpful (Jeste et al., 2020). Adaptation to online learning varied considerably across people with ID, some reporting no difficulty, others claimed that they had not received the necessary support for online education (Amor et al., 2021; Spencer et al., 2021). Younger people with ID (under 21 years) received more support (79.4%) than did adults (38.7%), from their family caregivers rather than from the education system (Amor et al., 2021).

In addition to global Government guidelines, additional reasons reported for increased contact and provision via ICT included increased anxiety and worry at the beginning of the pandemic due to the sudden rapid transfer to online provision (Zaagsma et al., 2020), the ease of using ICT to contact services, the (un)availability of services and the influence support staff could exert on the use of services (Scheffers et al., 2021).

With regard to the efficacy of ICT provision of support and services, most people with ID could not engage within videoconference therapy (Rawlings et al., 2021). There was acknowledgment that online was not the first choice with numerous logistical issues (Rothman, 2021), and telehealth was not always viewed by carers as ideal (Masi et al., 2021). The quality of contact was rated as significantly diminished following COVID-19 (Scheffers et al., 2021). Nonetheless, positives of online provision were also noted in terms of allowing more space and time for progress/development and building of the therapeutic relationship (Rothman, 2021) and many family carers viewed online videoconferencing as helpful during COVID-19 (Araten-Bergman & Shpigelman, 2021).

Theme 1.3: The influence of digital inclusion on well-being during the COVID-19 pandemic

The relationship between well-being and digital inclusion for people with ID was often not considered in the papers reviewed. Seven of the papers in the review considered the effects of digital inclusion and ICT use during COVID-19 on people with ID. The definitional frameworks of well-being as balance, homeostasis and equilibrium (Dodge et al., 2012) and the domains of quality of life as outlined by Schalock et al. (2002) were utilised to identify themes to address the impact on well-being within Objective 2.

The primary aspect of well-being considered was social and interpersonal well-being, manifest as acknowledgement of greater need for online contacts so that people were less likely to feel isolated during the pandemic. Maintenance of interpersonal relationships and social inclusion with friends, family and others through digital inclusion use was subjectively reported in interviews, observations and surveys by people with ID and staff more often than influences on other dimensions of well-being (Lake et al., 2021; McCausland et al., 2021; Navas et al., 2021; Rothman, 2021; Scheffers et al., 2021). Such contact was linked with greater life satisfaction and happiness (Navas et al., 2021).

Other aspects of well-being enhanced by digital inclusion during COVID-19 included emotional wellbeing and choice and power. Benefits to emotional wellbeing were reported, in qualitative interviews and a cases studies, for people whilst they were engaging with online therapeutic, social and leisure activities through the opportunity to discuss and express feelings and via increased structure and routine (Datlen et al., 2020; Lake et al., 2021). The opportunity for increased agency, power and choice afforded by digital inclusion was highlighted. For example, online therapy to enhance well-being may increase autonomy and accessibility for people with ID (by allowing people to have therapy whilst doing other activities and whilst eating) (Power et al., 2021). Confidence was reported to have increased in a case study, during online dance therapy (Rothman, 2021).

In addition to the domains of quality of life, well-being as the maintenance of balance in life during COVID-19-related life challenges was evident in the prioritisation of finding ways technology could facilitate life continuing as usual. Where an activity was lost or reduced in quality due to the lack of a digital alternative the negative impact on the general well-being of the person with ID was inferred but not evaluated in the studies reviewed, few of which directly addressed well-being as their primary aim.

Theme 1.4: Challenges and barriers to digital inclusion and participation during COVID-19

Of the 16 papers included, 14 papers reported on challenges and barriers related to digital use during the pandemic. Evidence is shared from perspectives of children and adults with ID, healthcare staff, support staff and family members. Digital poverty during COVID-19 was exacerbated by being dependent on support for access (Lake et al., 2021) and protection and security concerns being prioritised over online opportunities (Power et al., 2021; Rawlings et al., 2021).

As with many other aspects of their lives, dependence on carers to proxy access technology from home (Datlen et al., 2020) especially for people with ID who were non-verbal or could not use digital devices was also reported (Power et al., 2021).

Lack of digital literacy skills and confidence in prior use of ICT also reduced social participation (Lake et al., 2021; McCausland et al., 2021). Lack of prior support and training for both people with ID, support staff as well as health care staff was both a barrier and a challenge to pivot in person meetings and support to online meetings (Jeste et al., 2020; Lake et al., 2021; Lunsky et al., 2021; Masi et al., 2021). For some, loss of autonomy and an increased need for support were drawbacks of digital opportunities (Datlen et al., 2020; Lunsky et al., 2021; Power et al., 2021).

Other structural barriers for ICT use for people with ID were health care using different tools and platforms within telehealth (Lunsky et al., 2021; Rawlings et al., 2021), the cost of digital devices (Lake et al., 2021) and no internet connection (Power et al., 2021). Sensory impairments were mentioned to interfere with successful digital communication (Rothman, 2021). Dependence on carers to proxy access technology from home (Datlen et al., 2020) especially for people with ID who were non-verbal or could not use digital devices was also reported (Power et al., 2021).

With regard to children with ID’ experiences of digital exclusion almost half of students had difficulties in remote learning and reported receiving no support to access online education (Amor et al., 2021). Masi et al. (2021) report that parents’ reported an inaccessibility of telehealth services and that telehealth therapy was not working well for their children. Older adults were reported to experience higher levels of poor access and use of ICT (McCausland et al., 2021).

Theme 1.5: Facilitators of digital Inclusion during the pandemic

Eleven papers mentioned facilitators to using ICT during COVID-19. Having prior experience made it easier to pursue educational activities (Amor et al., 2021; Jeste et al., 2020; Rawlings et al., 2021), receive services (e.g. art therapy) (Datlen et al., 2020; Navas et al., 2021; Power et al., 2021; Rothman, 2021), or virtual visits from family members (Araten-Bergman & Shpigelman, 2021; McCausland et al., 2021; Scheffers et al., 2021) through videocalls. This relied on financial resources for procuring ICT devices and an internet connection being available and accessible (Burke et al., 2021; McCausland et al., 2021). Other personal characteristics, measured among older people with ID, that were associated with greater ICT access and use were mild or moderate levels of ID, and being under age 65 (McCausland et al., 2021). As for searching information online, people with ID wished for more cognitive accessibility (Lake et al., 2021). Most often, technical support was reported as a prerequisite often needed to profit from online social participation and services (Amor et al., 2021; Burke et al., 2021; McCausland et al., 2021). Caregivers or one’s personal support network were the most likely persons to provide technical support to service users (Power et al., 2021; Rawlings et al., 2021), especially for students under the age of 21 (Amor et al., 2021).

The support in ICT use received varied according to living context. Persons living in supported accommodation received less according to one study (Navas et al., 2021), but in another study, elderly persons living independently reported less access and less use of ICT (McCausland et al., 2021). This highlights the importance of training and support in ICT use for and by service providers and caregivers, who also benefit from peer technical support and mentoring (Power et al., 2021; Scheffers et al., 2021). Among strategies shared by professionals to make teletherapy successful, establishing a contract or netiquette guidelines for online interactions were offered by art therapists (Power et al., 2021) and could be generalised to other settings (e.g. dress appropriately, log in on time, keep device still). Having met in person first or having an established relationship (Burke et al., 2021; Power et al., 2021) between service user and provider was also mentioned as a facilitator to personal meetings going online during the lockdown.

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