Around the world, there has been much research on mental health during the COVID-19 pandemic and the World Health Organisation (WHO) has highlighted the increased rates for symptoms of anxiety (6–51%) and depression (15–48%) (WHO, 2021
). According to previous research, early life adversities are a key factor for either short- or long-term mental health difficulties (Scott, 2011
). During the COVID-19 pandemic, some of the most common adversities that are experienced by the majority of the population include unemployment and financial instability; missed education and lost prospects; social isolation and fear of life-threatening disease in self or loved ones (WHO, 2021
). In fact, the impact of the COVID-19 pandemic varies across the globe, depending on the population. For instance, evidence suggests that those with pre-existing mental health problems and other behavioural disorders who experienced adversities such as financial instability and/or missed education were at a higher risk of mental health problems during the COVID-19 pandemic (Neelam et al., 2021
; WHO 2021
However, there has been limited research on how the COVID-19 pandemic affects individuals with neurodevelopmental disorders. Reports suggests that families of individuals with Special Education Needs and Disabilities (SEND) have been greatly impacted by the pandemic as there was a change in routine and a lack of access to support networks as well as added caring responsibilities which caregivers found challenging to combine with other duties (e.g., working from home) (Asbury et al., 2021
). There is also evidence that suggests increased rates of anxiety and elevated worries for individuals with SEND after the first wave of COVID-19 in China (Su et al., 2021
). Sideropoulos et al. (2021
) highlighted the increased levels of anxiety in individuals with SEND during the first months of the pandemic in the UK. In addition, elevated worries about school closures and loss of institutional support for individuals with SEND during the lockdowns have been also discussed in the literature (Sideropoulos et al., 2021
, Su et al., 2021
Whist mathematical models of epidemics show the effect of multiple lockdowns can be effective (Scala, 2021
), mental health researchers raised concerns around their impact on mental health as many countries, including the UK, were undergoing a series of lockdowns (Adams-Prassl et al., 2020
; Rossi et al., 2020
; Thakur et al., 2020
). The effects of confinement and severe physical or social restrictions have shown deleterious effects on mental health. Such research spans situations such as solitary confinement (Chadick et al., 2018
; Reiter et al., 2020
), segregation (Rubio et al., 2021
; Valentine et al., 2019
), and polar expeditions (Palinkas & Suedfeld, 2008
; Rubio et al., 2021
). Though the impact of the COVID-19 pandemic and its restrictions have caused significant elevated rates of mental health to individuals with SEND (Panchal et al., 2021
), to our knowledge there is no research on the effects of the pandemic on individuals with Down Syndrome and the challenges and difficulties families of individuals with Down Syndrome have experienced during the COVID-19 pandemic.
Down syndrome (DS) is a genetic disorder caused by an additional chromosome 21 occurring spontaneously for approximately 1 in 1000 live births, resulting in intellectual disability. There are large individual differences in DS in general intellectual ability. Around 80% of individuals with DS have moderate intellectual disability, but some fall within the severely impaired range and others overlap with typical development (Chapman & Hesketh, 2000
; Di Nuovo & Buono, 2009
; Pueschel, 1995
; Thomas et al., 2020
; Zampini & D’Odorico, 2013
). DS is typically characterized by particular difficulty with expressive language and cognitive delay (Chapman, 1997
; Daunhauer & Fidler, 2011
) with these difficulties becoming more pronounced overtime due to a slower pace of development (D’Souza et al., 2020
; Dykens et al., 2006
; Fidler et al., 2006
; Miller, 1999
; Oliver & Buckley, 1994
; Startin et al., 2020
). Individuals with DS often show poor short-term memory but relative strengths in relation to visual -spatial difficulties, sensory processing, behavior and social responsiveness (Foley et al., 2016
; Tassé et al., 2016
). There is wide variability in the language abilities of those with DS from being non-verbal to developing relatively large vocabularies. In addition, individuals with DS are reported to exhibit fine and gross motor problems or delays in adaptive behaviors; such as feeding and dressing oneself (Marchal et al., 2016
Scholars have extensively discussed the emotional and behavioral challenges children with DS experience (Gameren-Oosterom et al., 2011
; Naerland et al., 2016
). It is common for children with DS to have difficulties with verbal working memory, speaking, writing and arithmetic (Cuskelly et al., 2017
; Faragher, 2017
; Næss et al., 2011
; Rice et al., 2005
; Will et al., 2019
). Other studies also report problems with social withdrawal, social skills and disobedient behavior (Barisnikov & Lejeune, 2018
; Coe et al., 1999
; Galeote et al., 2011
). Despite those challenges, children with DS score significantly lower on anxiety and depression when compared to typically developing peers (Gameren-Oosterom et al., 2011
). However, this could be a result of numerous factors ranging from other concomitant health problems to access to care and more, which are yet to be explored in the DS literature.
Recent research which draws on data from the COVID-19 pandemic in Italy suggests that individuals with DS experienced increased rates of depressive symptoms and social withdrawal than before the first national lockdown (Villani et al., 2020
). It should be noted that several confounding factors may contribute to either the positive or negative elevated levels in individuals with DS (Esbensen & Seltzer, 2011
), including age and sex, which have not yet been researched (Sáncbez-Teruel & Robles-Bello, 2020
). Hence, there is a vital need to develop a better understanding of the factors associated with syndrome-specific impacts on the mental health of those individuals. For example, at a functional level, scores on the Instrumental Activities of Daily Living scale (IADLs) worsened since the beginning of the pandemic for individuals with DS, whilst scores on the Activities of Daily Living scale (ADLs) did not change significantly. Whilst ADLs include basic self-care tasks such as bathing, IADLs include more complex tasks related to one’s ability to live independently (e.g., shopping, using public transportation; Villani et al., 2020
). Nevertheless, the research is primarily focused on how these factors contribute to the caregivers’ mental health rather than on the impact of those factors on the individuals with DS (Esbensen & Seltzer, 2011
Regardless of the limited evidence available relating to the impact of COVID-19 on individuals with DS, research has previously demonstrated the uniqueness of caring for an individual with DS. For example, Fidler et al. (2000
) looked at three different groups of children with Intellectual Disability and their families. They compared the scores of maladaptive behavior in children with DS, Williams Syndrome (WS) and Smith-Magenis syndrome, as well as parental outcomes such as Parent and Family Problems and Parental Pessimism. Children with DS exhibited significantly lower rates of maladaptive behavior than the other two groups. Moreover, among the families participating in the study, the families of children with DS scored the lowest in overall pessimism, and in parent and family problems. The study also found that predictors of stress varied among the three groups, where only age significantly predicted family stress in families of individuals with DS, whilst for families of individuals with Smith-Magenis syndrome, maladaptive behavior predicted stress levels, while in families of individuals with WS, both factors predicted stress levels. The authors suggested that this difference reflects the lower levels of maladaptive behavior found in children with DS. Other studies echo the finding that children with DS not only exhibit lower psychiatric levels of mental health (Spendelow, 2011
) but also that they demonstrate the uniqueness of children with DS (Corrice & Glidden, 2009
A different way to address the question of what accounts for the different levels of psychosocial wellbeing observed in individuals with DS is the investigation of caregivers’ wellbeing. Research has demonstrated the links between caregivers’ mental health and the way they perceive their children’s wellbeing (Neece et al., 2012
) as well as the different factors that contribute to parental stress depending on the neurodevelopmental condition their child has (Ashworth et al., 2019
). Caregivers of individuals with DS often report experiencing lower levels of stress (e.g. Esbensen & Seltzer, 2011
; Kasari & Sigman, 1997
), having less pessimistic outlooks regarding their child’s future (Fidler et al., 2000
), perceiving less temperamental difficulties in their children (Kasari & Sigman, 1997
), and having greater and more satisfying social networks and support (Hauser-Cram et al., 2001
), where these differences were reported in relation to caregivers of children with other developmental conditions, or typically developing children. This effect was named the Down Syndrome Advantage. Whilst exceptions have been found to this phenomenon in the literature (Cunningham, 1996
; Esbensen et al., 2008
; Gath, 1990
; Greenberg et al., 2004
; Roach et al., 1999
; Sanders & Morgan, 1997
), research findings tend to report more positive and less negative wellbeing outcomes for caregivers of individuals with DS compared to mothers of children with other developmental and intellectual disabilities (Esbensen & Seltzer, 2011
). In addition, typically developing siblings (TDS) of individuals with DS report more positive wellbeing outcomes than TDS of individuals with autism, in terms of their depressive symptoms, warmth within the sibling relationship, and higher levels of positive affect towards their sibling (Hodapp & Urbano, 2007
; Orsmond & Seltzer, 2007
In sum, whilst previous research has highlighted elevated levels of anxiety in the SEND population during the COVID-19 pandemic (Asbury et al., 2021
; Sideropoulos et al., 2021
), there is a lack of research on how the experiences of those with DS compare to other SEND groups. Given that previous studies have shown that individuals with DS may experience and respond to averse situations differently than other groups of SEND, it is not clear whether this also holds for how they experience the impact of COVID19. It is therefore important to investigate the mental health, specifically anxiety, of individuals with DS during the COVID-19 pandemic, in order to make comparisons to other groups of individuals with SEND.
115 caregivers (97.53% female) of 171 young individuals (115 children with SEND of which 56 had a TDS) completed an online survey. The caregivers were aged 23 to 66 (M = 46.78, SD = 7.96) and 33.91% (n = 39) were educated to a university degree level (e.g., having completed a Bachelors degree). There was no statistically significant association between caregiver’s educational qualification and the three groups we used in our analysis: χ(5) = 4.46, p = 0.48.
The caregivers were recruited through various means of communication such as social networks, social media, word-of-mouth, by emails to special education institutions as well as through support groups such as Williams Syndrome Foundation, Down Syndrome Association UK, and ADHD Foundation UK.
When looking at the total SEND population, parents reported that 21.74% (n = 25, 6 of those were individuals with DS) of their children had previously received a diagnosis of anxiety and 70.43% (n = 81) were aware of the COVID-19 pandemic. It is important to note that the individuals with SEND may not have consciously understood any changes to their routine caused by the COVID-19 pandemic. Yet, they still may have experienced higher anxiety as a result of the new routines caused by the pandemic (e.g., wearing masks, frequent testing) and thus they were included in the analyses.
All the caregivers reported that their child with SEND had received a formal diagnosis (reported in Table 1
). Individuals with SEND (32.65%, n = 16 female) ranged in age from 2 to 25 years old (M = 13.37, SD = 6.48). As can be seen from Table 1
, 58.3% (n = 67) had a diagnosis of DS (47.83%, n = 33 female). Due to the hypotheses and aims of this paper, we grouped all the other diagnoses (41.74%, n = 48) into a group (named “other SEND”).
Overview of diagnosis of children with Special Education Needs and Disabilities (SEND)
Autism spectrum disorder
Intellectual disability (not otherwise specified)
Attention-deficit disorder (with or w/out hyperactivity)
| || |
Out of the 115 caregivers, 56 also completed the survey for a TDS (63.16%, n = 36 female) in the family. The TDS had a similar age range as the total SEND population; 3–24 years (M = 13.11, SD = 5.88). Only 5.45% (n = 6) of the TDS were diagnosed with an anxiety disorder and all of them were aware of COVID-19 (n = 54 with two missing data cases).
We also measured caregivers’ anxiety on a 5-Likert scale with higher scores denoting higher levels of anxiety. Although caregivers of individuals with DS (M = 3.75, SD = 1.10) reported higher levels of anxiety compared to caregivers of individuals with other SEND (M = 3.42, SD = 1.37) and caregivers who also reported that they have a typically developing child (M = 3.58, SD = 1.25), these differences were not significant, F(2,227) = 1.07, p = 0.34.
Materials and Procedure
Caregivers completed an anonymous cross-sectional survey (similar to Sideropoulos et al., 2021
) through Qualtrics between 29th of January 2021 and 29th March 2021 which coincided with the 3rd national lockdown in the UK. Their participation was entirely voluntary as well as anonymous.
This survey contained a range of open-ended and closed questions over four key sections of which only three were used for this study: (a) demographic questions about the children; (b) COVID-19 related questions (not used for this study); (c) concerns and worries of the participating caregiver and d) of their children.
The thirteen questions around worries were informed by the wellbeing categories as defined by Schalock (1996
) and included worries related to social inclusion (e.g., not being able to meet others), physical wellbeing (e.g., worries about catching COVID-19 and own health), interpersonal relations (e.g., worry about family conflict and others becoming ill), material wellbeing (e.g., financial worries), emotional wellbeing (e.g., worries about boredom), self-determination (e.g., loss of routine), and personal development (e.g., loss of institutional support). These were grouped into the following categories: Health Related Worries, Social Related Worries, School Closure Related Worries and Family Related Worries. All worries were rated on a scale from 1 to 5 (with 1; “not concerned at all”, to 5; “very concerned”).
Participants were asked to rate their own and their children’s anxiety and worries over three time-points: (a) before March 2020 (pre-pandemic); (b) during March 2020 (initial lockdown and start of the pandemic) and (c) now (January 2021 to March 2021).
Ethical approval for the study was obtained from Ethics Commission of UniDistance, Switzerland before the start of the study. Respondents provided online consent to take part in the online study and they were free to withdraw at any stage.
Limitations and Future Studies
The present study investigated the anxiety levels and worries through caregiver report, rather than a self-reported measure. Our previous work, but also other research, shows the direct link between caregivers' anxiety and the children’s perception of mental health state (Sideropoulos et al., 2021
). However, future studies should also examine the experiences of those with SEND diagnoses, including those with DS directly through self-reports.
Furthermore, only 6 participants with DS reported an existing diagnosis of anxiety compared to the other SEND participants who reported 19 cases, whilst this is a very small number for a factor to be used in a regression model, this could be indicative of what we might see in larger sample sizes for the DS population.
In addition, anxiety was measured using a non-standardised set of questions. Therefore, it is important that follow-up works use a standardised self-reported method to assess anxiety level of this population such as the Generalised Anxiety Disorder scale (Spitzer et al., 2006
Finally, it is evident from our data that reported anxiety levels in all groups seem to plateau rather than decrease which is of great public health concern for the SEND community. However, this could be due to biased recall of the past. Another explanation could be that people who experienced higher/lower levels of anxiety did not participate in our online survey. Hence, future studies need to focus on (a) longitudinal designs and (b) the understanding of mental health of this population as well as on the prevalence factors and recovery from the pandemic’s impact.
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