Papers: The Impacts of COVID-19
Families with Down Syndrome: Inclusion/Exclusion and COVID-19
Dr Andrea Tonner, University of Strathclyde
This research considers how the covid pandemic has impacted social inclusion of children with Down Syndrome. The concept of social inclusion is increasingly prominent within a range of literatures; sociological, political, and clinical (Davey and Gordon, 2017) and emerges as a clear aim for those within the learning disability community (Ainscow, 2020). For most people with Down Syndrome achieving social inclusion requires access to a range of market resources. During covid 19 many of these resources have been suspended or removed with consequences for the individuals who rely upon them. Taking a social inclusion perspective this paper considers the extraneous shocks to family care assemblages, the impact on inclusion and how families have reacted to these changes.
Social inclusion includes dimensions of active and meaningful engagement, choice and control, and societal connections (Koller et al, 2018). Hargreaves et al (2021) discusses how prior to covid significant progress had been made in inclusion the fields of education, work, and broader social inclusion. Families have been instrumental in achieving inclusion for their children and creating what some have called assemblages of care (Epp & Velagaleti, 2014).
Reporting a qualitative study including interviews with 6 families with children under 10 with Trisomy 21 (Down Syndrome) conducted during the 2nd national Covid-19 lockdown in the UK. This paper discusses the progress that families feel have been made in recent years in delivering inclusion for their children but the precarity of their care assemblage and how these have often "crumbled" during covid excluding children from presence, participation and social engagement with their peers. It considers why children with Down Syndrome have been particularly impacted. It considers how families have addressed these issues to mitigate covid's exclusionary effects.
Preliminary findings of a qualitative study of the impact of Covid 19 on children with Down syndrome, aged 4- 10 years, and their families. Set in the wider picture of the need to fully understand inclusion in all aspects of life and the barriers/supports needed.
Different experiences in different families – some positive and some negative.
Shielding may have had to be very strict due to specific health vulnerabilities cutting off some families from grandparents for longer than for most. Children not able to understand why they could not go out or grandparents only come to windows.
The negative effects of losing all the usual services and therapies for many months. The challenges of home schooling without usual TA supports.
The benefits of being able to access online theatre shows that child may not be able to attend live because of sensory or behavioral challenges.
The study is ongoing – contact Dr Tonner for more information.
Anxiety and Worries of Individuals with Down Syndrome During the COVID-19 Pandemic: A Comparative Study in the UK
Sideropoulos, V.1, Kye, H.1, Dukes, D.2,3, Samson, A. C.2,4, Palikara, O.5, & Van Herwegen, J.1
- Department of Psychology and Human Development, UCL, Institute of Education, University College London, London, UK
- Institute of Special Education, University of Fribourg, Switzerland
- Swiss Center for Affective Sciences, University of Geneva, Switzerland
- Faculty of Psychology, Unidistance Suisse, Brig, Switzerland
- Department for Education Studies, University of Warwick, Coventry, UK
The present study explored the effects of the pandemic on individuals with Down Syndrome (DS; n = 67) compared to other groups with Special Education Needs and Disabilities (SEND; n = 48) and their Typically Developing Siblings (TDS; n = 56). In total, 115 caregivers reported on their own anxiety and worries and of their children. Anxiety levels for individuals with DS appeared to be lower compared to other SEND populations and to TDS. In terms of worries, individuals with DS worried more about social-related worries but worried less about family-related aspects compared to the other groups. In sum, individuals with DS might show less anxiety but still worried more about specific aspects related to the impact of COVID-19 pandemic on their lives.
- Not all Special Education and Disabilities group are equally affected in terms of anxiety
- Individuals with Down Syndrome were less anxious at the beginning of the pandemic compared to the third national lockdown
- Individuals with Down Syndrome still have significant worries about certain aspects of life, e.g., School and Health related worries
- Health status and Diagnosis of Anxiety are significant predictors of Anxiety levels for all SEND groups
Link to the paper: https://link.springer.com/article/10.1007/s10803-022-05450-0
Link to general SEND resources: https://www.specialneedscovid.org
The lived experiences of new mothers accessing feeding support services for infants with Down syndrome during the COVID-19 pandemic
Laura Hielscher, Amanda Ludlow, Silvana Mengoni, Samantha Rogers and Karen Irvine (University of Hertfordshire)
Background: Infants with Down syndrome are more likely to experience feeding problems and mothers often require more support with feeding than mothers of typically developing infants. Throughout the COVID-19 pandemic, the provision of many NHS feeding support services changed from face-to-face to online support and this has impacted some maternal feeding experiences negatively.
Research Question: How have feeding support services changed for mothers of infants with Down syndrome as a result of the COVID-19 pandemic and lockdowns?
How have changes to services impacted the support they have been able to access, and what was their experience of feeding during this time?
Method: 13 mothers of infants with Down syndrome took part in a semi-structured interview which was then analyzed using interpretative phenomenological analysis (IPA).
Results: Four main themes were identified: Every baby with Down syndrome has such a unique journey, There's no point asking, they won't know, Postcode lottery and Lack of in-person support. This indicated that: access to and quality of care varied significantly between individuals; health professionals were felt to lack important Down syndrome specific knowledge and this led to unmet needs and mothers feeling let down; virtual feeding support was insufficient for many; mothers struggled with a lack of social support when encountering feeding problems and missed the support and social connections they could have accessed at breastfeeding support groups pre-pandemic.
Conclusion: This study has implications for the feeding support available during the COVID-19 pandemic but also beyond this. There is wide scope to improve the feeding support available to mothers of infants with Down syndrome moving forwards.
- Infants with Down syndrome are more likely to experience feeding problems and mothers are likely to require more feeding support than mothers of typically developing infants.
- During COVID-19, many feeding support services changed from face-to-face to online, which impacted some maternal feeding experiences negatively, but no studies to date have explored the impact for mothers of infants with Down syndrome.
- Thirteen new mothers of infants with Down syndrome (aged 8-17 months) took part in semi structured interviews and then thematic analysis was conducted. Three superordinate themes were generated: 1) Every baby with Down syndrome has a unique journey, 2) There’s no point asking, they won’t know, 3) Lack of in-person support.
- Mothers expressed frustrations over health professionals’ lack of Down syndrome specific knowledge resulting in unmet needs. This was further magnified due to the nature of the virtual support being offered. Moreover, mothers struggled with reduced social support from other mothers when encountering feeding problems.
- These results hold real-world implications where health professionals could provide more specialized face-to-face feeding support to mothers of infants with Down syndrome that support feeding practices, wellbeing and a sense of inclusion. This should be prioritized for children’s overall development and mothers’ wellbeing.