key: cord-0980836-2o965d8z
authors: Fisher, Marisa H.; Sung, Connie; Kammes, Rebecca R.; Okyere, Christiana; Park, Jiyoon
title: Social support as a mediator of stress and life satisfaction for people with intellectual or developmental disabilities during the COVID‐19 pandemic
date: 2021-10-11
journal: J Appl Res Intellect Disabil
DOI: 10.1111/jar.12943
sha: 1b318da9c0ac27b527608f1cba51f9e5da2797a2
doc_id: 980836
cord_uid: 2o965d8z

INTRODUCTION: This study examined factors that predict stress level and life satisfaction among adults with intellectual or developmental disabilities during the COVID‐19 pandemic and the role of social support. METHOD: From a larger study about the experiences during the pandemic of 2028 individuals with and without disabilities, 181 adults with intellectual or developmental disabilities (or proxy) responded. RESULTS: Most respondents with intellectual or developmental disabilities (92.8%) reported negative impacts from the pandemic, with 55.2% of the 96 employed pre‐pandemic reporting impacted employment, including job loss. The negative impact of the pandemic was a significant predictor of stress level; social support was related to reduced stress. Stress level and the negative impact of the pandemic were inversely related to life satisfaction; social support was positively related to life satisfaction. Social support partially mediated the association between stress level and life satisfaction. DISCUSSION: Comprehensive services and social support systems are needed to combat the impact of the pandemic.

The COVID-19 pandemic brought the world to a standstill as countries implemented large-scale containment efforts, including 'social distancing' and stay-at-home orders (Jacobson et al., 2020) .

Despite the protections to physical health, the stay-at-home orders have had a detrimental impact on mental health and well-being (Campion et al., 2020) , particularly for those within the disability community. For example, parents and caregivers of individuals with disabilities experienced negative impacts on mental health due to increased caregiving needs, fear of contracting the virus and rising financial pressures (Asbury et al., 2020; Embregts et al., 2021; Lunsky et al., 2021; Willner et al., 2020) and negative impacts on quality of life and well-being (Jeste et al., 2020; Patel et al., 2021) . Parents and caregivers also reported a loss of social supports and essential services (Neece et al., 2020; Willner et al., 2020) . Children with disabilities lost access to educational, therapeutic and healthcare services (Jeste et al., 2020; Pellicano & Stears, 2020) . than individuals without disabilities (Hsieh et al., 2020) . Heightened anxiety and depression were also associated with co-occurring chronic health conditions and changes in stressful life events. Thus, given that individuals with intellectual or developmental disabilities are already more vulnerable to experiencing stress, anxiety and depression (Campion et al., 2020; Hassiotis et al., 2020; Pellicano & Stears, 2020) , especially in response to stressful life events (Hsieh et al., 2020) , this risk may be further exacerbated during the pandemic.

Individuals with intellectual or developmental disabilities also have a heighted risk of exposure to COVID-19, especially those who require daily care or support, use shared or public transportation and who reside in communal living settings (Gleason et al., 2021) . If individuals with intellectual or developmental disabilities do contract COVID-19, they are also at greater risk of experiencing adverse health effects due to a higher incidence of comorbid health conditions that lead to greater complications from COVID-19 (e.g., heart conditions, lung disease, obesity and diabetes) and to being admitted to the hospital (Gleason et al., 2021; Perera et al., 2020) . Given these heightened health risks, including a greater risk of death, individuals with intellectual or developmental disabilities are experiencing extraordinary stress and fear of the virus (Amor et al., 2021) .

In addition to the stress and fear of becoming sick , individuals with intellectual or developmental disabilities may experience increased stress because they are also more likely to face social adversity and health inequities when being treated in healthcare systems during the pandemic (Hassiotis et al., 2020) . Adults with intellectual or developmental disabilities may also experience stress related to social distancing (Courtenay & Perera, 2020; Pellicano & Stears, 2020) and the closure of non-essential businesses may impact the employment of adults with intellectual or developmental disabilities, increasing stress as these individuals already experience difficulties finding and maintaining employment (Nord et al., 2013; Okyere et al., 2021) .

All of these may also cause changes in routines or support personnel, potentially leading to anxiety, paranoia and increases in challenging behaviours (Courtenay & Perera, 2020; Wieting et al., 2021) .

Given the unknown long-term psychosocial and employment impacts of the pandemic, it is critical that we determine how adults with intellectual or developmental disabilities were affected so that we can immediately address disparities and ensure continuity of services postpandemic (Bigby, 2020; Okyere et al., 2021; Thompson & Nygren, 2020) .

Further, although stress experienced by people with intellectual or developmental disabilities is linked to many mental health and behavioural problems (Esbensen & Benson, 2006; Hulbert-Williams et al., 2011) , social support has a powerful influence on an individual's mental health and subjective well-being and may serve a protective role to ameliorate mental health and behavioural issues (Bishop-Fitzpatrick et al., 2018; Lunsky & Benson, 2001; Scott & Havercamp, 2014; Sung et al., 2021) .

The current study was conducted to determine how adults with intellectual or developmental disabilities were impacted by the COVID-19 pandemic and what factors were associated with stress level and life satisfaction during the pandemic. In addition, we explored whether heightened stress was related to reduced satisfaction with life and whether social support mediated the relationship between stress and life satisfaction among individuals with intellectual or developmental disabilities. For the purposes of this article, social support refers simply to the participants' perceptions or descriptions of available social support. Our research questions were (1) How were individuals with intellectual or developmental disabilities impacted by the pandemic, including impacts on employment and on their life in general?

(2) What demographic, personal, and environmental factors predict stress level and life satisfaction during the pandemic for adults with intellectual or developmental disabilities?

(3) Does social support mediate the relationship between stress level and life satisfaction for adults with intellectual or developmental disabilities during the pandemic? 2 | METHOD

To gather responses globally, a web-based survey was developed and translated from English into 13 other languages by native speakers of those languages. After institutional review board approval, the survey was uploaded to the Qualtrics online survey platform. A flyer containing the survey link was distributed worldwide through emails, listservs and social media posts to recruit individuals with and without disabilities and/or chronic health conditions, ages 18 years and older. Using convenience sampling, the research team reached out to personal contacts within universities, as well as local and international agencies and groups and asked them to distribute the survey to potential participants with and without disabilities within their networks. The survey was available from early-April 2020 until late-May 2020 (see Okyere et al., 2021; Sung et al., 2021 for more details about the larger study).

From the larger dataset of 2028 adults with and without disabilities, data from those individuals who indicated the presence of an intellectual or developmental disability were extracted for the current study. Specifically, 181 (9.3%) respondents indicated the presence of an intellectual or developmental disability with 107 (59.1%) explicitly indicating a presence of an intellectual disability or a genetic condition commonly associated with intellectual disabilities (e.g., Down syndrome, Williams syndrome). The mean age of the sample was 33.40 (SD = 13.80) years with a range from 18 to 79 years. Please see Table 1 for additional participant information.

The majority of respondents for the current study were from North America (64.1%), with the remainder from Europe (23.8%) and Asia (12.2%). All countries in which respondents were living were experiencing lockdown restrictions during the survey period. To increase participation of those with significant disabilities, there was the option for a proxy respondent to complete the survey on behalf of an individual with an intellectual or developmental disability; 85 surveys (47%) were completed by a proxy respondent (e.g., parents, guardians). Proxy respondents were provided the instructions, 'If you are completing this on behalf of someone else, please remember to answer the following questions only about that person'. Given the subjective report of perceived stress level, life satisfaction, and social support, independent t-tests were conducted and confirmed that there were no significant differences between self and proxy respondents on these dependent variables.

The survey was developed by a group of five international disability research scholars specifically to understand how the COVID-19 pandemic has impacted individuals worldwide, including individuals with an intellectual or developmental disability. With many countries under stay-at-home orders to avoid the spread of the virus, the use of an online survey allowed for collection of data from respondents while they were following these orders. This also allowed them to reflect on their experiences of the stay-at-home orders and the impact of COVID-19 while they were currently experiencing the event. As the goal was to study the novel experiences with the COVID-19 pandemic, the survey included COVID-19 specific questions that were descriptive and exploratory in nature (Schlenger & Silver, 2006) and measures for assessing the psychosocial impact of the pandemic.

Respondents first provided basic demographic information related to their sex, age, country of residence and disability status. Disability Next, respondents answered questions related specifically to their experiences of the pandemic. These questions were developed by the research team and were kept broad enough to allow respondents to consider their own personal experiences with the pandemic. Response options were either on a rating scale or a list of options for respondents to choose from, with a text box for additional comments. Examples of questions included whether the pandemic had negatively impacted their life (no negative impact; little bit of negative impact; or very large negative impact on my life), whether they were employed prior to the pandemic, and if so, whether and how their employment was impacted (e.g., laid off or dismissed from employment; told to work from home; chose not to work due to personal/health reasons; and/or changes in work hours/income/pay rate).

The Perceived Stress Scale (PSS; Cohen et al., 1983) contains 10 items assessing an individual's perceived level of stress. Respondents rated how often they have felt a certain way on a 5-point scale (never (0) to very often (4)). To understand the impact of the COVID-19 pandemic on stress level, the wording on the PSS was changed from 'within the last month' to 'currently' (Cronbach α = .859 for the current sample).

Four items were reverse scored and a total score (range: 0-40) was calculated, with higher scores indicating more stress and a total score T A B L E 1 Demographic characteristics for the total sample of adults with an intellectual or developmental disability et al., 1988) examines an individual's perception of support they receive from family, friends, and significant others. Respondents rated their agreement to 12 items on a 7-point scale (very strongly disagree (1) to very strongly agree (7)). The phrase 'right now, at this moment' was added to the general scale instructions to assess social support during the pandemic (α = .937 for the current sample). The total score (range: Table 2 for specific ways in which employment was impacted).

Second, the average stress score for participants with an intellectual or developmental disability, 20.83 (SD = 6.91; range: 6-40), was range: 12-84) (see Table 2 ).

The perceived negative impact of the pandemic on life was positively correlated with stress level and inversely correlated with life satisfaction during the pandemic. Life satisfaction was positively correlated with perceived support (r = .350, p < .001) but inversely correlated with stress level during the pandemic (r = À.559, p < .001) (see Table 3 ).

The first regression model included stress level as the dependent variable and four predictor variables were entered. The model was significant (R 2 = .314, F(3, 159) = 25.74, p < .001) and accounted for 31.4% of the variance in stress level during the pandemic. This is considered a large effect size (Cohen, 1988 (Cohen, , 1992 . Once all other factors were controlled, stress level during COVID-19 was significantly predicted by: negative impact of COVID-19 on personal life (β = .428, p < .001) and social support (β = À.368, p < .001). Negative impact of the pandemic on personal life was positively correlated with stress level, corresponding to a 0.43 standard deviation (SD) unit increase in stress level. However, it was inversely correlated with social support, with each SD unit increase in social support corresponding to 0.37 SD unit decrease in stress level (see Table 4 ).

The second regression model included life satisfaction as the dependent variable and five predictor variables were entered. The regression model was significant (R 2 = .351, F(4, 158) = 22.88, p < .001) and

accounted for 35.1% of the variance in life satisfaction during the pandemic. Again, this is a large effect size (Cohen, 1988 (Cohen, , 1992 each SD unit increase in social support corresponded to a 0.20 SD unit increase in life satisfaction (see Table 5 ).

The association between stress level (IV) and life satisfaction (DV) was significant (β c = À.559, t = À8.56, p < .001) and stress level ( p < .001, which is considered a large effect size (Cohen, 1988 (Cohen, , 1992 .

The significant results support the proposed mediation model (see 

The current study found that the pandemic negatively impacted the life of the majority of respondents with an intellectual or developmental disability. Of those who were employed before the pandemic, over half experienced an impact on employment, including job loss, changes in work hours or income or being told to work from home.

Beyond these societal impacts, individuals with an intellectual or developmental disability also experienced moderate levels of stress and nearly half of the participants reported neutral satisfaction to dissatisfaction with life. Moreover, the negative impacts of the pandemic on life and social support predicted the individuals' stress level during the pandemic. Additionally, the negative impacts of the pandemic on life, stress level during the pandemic and social support predicted life satisfaction during the pandemic. Finally, social support was found to be a partial mediator, mediating the relationship between individuals' stress levels and satisfaction with life.

Given the data for this study were collected at the onset of the pandemic, many of the issues presented, such as social isolation, poor psychosocial well-being and impacted employment, are still ongoing and will likely continue well beyond the end of the pandemic. This is concerning as these psychosocial and vocational challenges were already more likely to occur for individuals with intellectual or developmental disabilities pre-pandemic (Nord et al., 2013) , and may be further exacerbated post-pandemic, resulting in poorer quality of life among the population. Indeed, recent research examining the effects of the COVID-19 pandemic in individuals with intellectual or developmental disabilities in Spain reported that nearly three-quarters of their sample who were employed before the pandemic experienced interruptions to their work (Amor et al., 2021) .

In addition to these psychosocial and employment stressors, pre- F I G U R E 1 A partial mediation model of the relationship between stress level and life satisfaction mediated through social support. *p < .05; **p < .01; ab = indirect effects; c 0 = direct effect; c = total effect Stears, 2020). Such service gaps in supporting the needs of adults with an intellectual or developmental disability may not only have severe long-term impacts on their ability to be self-reliant and independent but may also add burden on caregivers and society (Asbury et al., 2020; Embregts et al., 2021; Patel et al., 2021; Redquest et al., 2021) . Given the protective role that social support plays in (Brooks et al., 2020; Hassiotis et al., 2020) . The finding that social support mediates the relationship between stress and satisfaction with life during the COVID-19 pandemic is particularly important. Clinicians should capitalise on this finding and work with individuals with intellectual or developmental disabilities to explore ways to expand or strengthen their social support system . Additionally,

given there are different sources (e.g., support from significant other, family, friends, professionals; Zimet et al., 1988) and types of social supports (e.g., instrumental, informational, emotional support and companionship; Vaux et al., 1987) , further research should examine if any or all of these dimensions drive the mediation more than the others during the pandemic. Such information will be helpful to inform practitioners regarding which to focus on when working with individuals with intellectual or developmental disabilities to expand their social support system during and beyond the pandemic . Future research should also account for the culture in which the individual with intellectual or developmental disabilities lives, as social support may be different across continents and countries and may differentially impact outcomes. Indeed, our findings revealed that individuals with intellectual or developmental disabilities in Asia reported significantly lower levels of social support than those in North America or Europe; further research is warranted to examine the underlying reasons and ways to improve social support.

It is also critical to improve and restructure employment services for individuals with intellectual or developmental disabilities. Programs that currently exist to support job finding for individuals with intellectual or developmental disabilities may need to be scaled up after the pandemic. To combat these negative effects, providing comprehensive services and adapting the infrastructure of services (e.g., through telehealth, proactive community outreach) for adults with intellectual or developmental disabilities will be an important component of continuing services (Duan & Zhu, 2020; Zaagsma et al., 2020) .

Finally, research should examine the experiences of individuals with intellectual or developmental disabilities during the pandemic over time to determine how they adapt, to identify new concerns that arise (Schuengel et al., 2020) , and to better prepare practitioners to address these issues once restrictions are lifted (Thompson & Nygren, 2020) . This would also help determine which services are most helpful and most needed. In particular, research on telehealth services and the best way to provide these services to individuals with intellectual or developmental disabilities is critical (Jeste et al., 2020) .

As telehealth becomes a common practice, the most effective approach to providing these services to individuals with intellectual or developmental disabilities must be examined.

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The authors are sincerely grateful to Drs. Lianjun J. Chen, Hung Jen Kuo, Cynthia Y. Y. Lai, Claude Normand, and Ingolf Prosetzky for assisting with translations. We are also grateful to all the people who disseminated and participated in the study.

The authors declare that they have no conflict of interest.

The current study was determined exempt by the Michigan State University Institutional Review Board, study number STUDY00004295. Informed consent was obtained from all individual participants included in the study prior to completing the online questionnaire.

The data that support the findings of this study are available from the corresponding authors, upon reasonable request.