Homeward bound: Exploring the motives of mothers who brought their offspring with intellectual disabilities home from residential settings during the COVID‐19 pandemic

Abstract

Background At the start of the COVID‐19 pandemic, some parents in the Netherlands decided to bring their offspring with intellectual disabilities, who normally live in residential care, home. The present study explored why the mothers decided to bring their offspring home. Method Interviews were carried out with seven mothers of adults with intellectual disabilities. An interpretative phenomenological approach was used to establish in‐depth accounts of the mothers' experiences. Results The analysis yielded three overarching themes: (a) Families are indispensable; (b) the complex role of being a mother of a child with intellectual disabilities; and (c) Who is looking out for our offspring during COVID‐19? Conclusions The mothers experienced a strong sense of wanting to do what was best for their offspring with intellectual disabilities during COVID‐19. The study provides insight into why mothers remain involved in the care for their offspring and the complexity of navigating lifelong care responsibilities.

Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review

“…Only nine studies (16%) focussed, at least in part, on Autistic adults with intellectual disability [ 13 •, 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 ]. For the 35 studies (64%) including Autistic adults’ self-report data, it is likely that participating adults did not have a co-occurring intellectual disability, since self-report requires the ability to understand and respond to questions (orally or in writing), usually without support.…”

Key learnings from COVID‐19 to sustain quality of life for families of individuals with IDD

“…Family choices on residential care during the pandemic Some changes to supports and services were made by the choice of families. Out of concern for how members with ID would fare in residential settings due to past negative experiences and a lack of trust that the well-being of their family members with ID would be prioritized in residential settings, some families preferred to have their members with ID at home to provide their supports despite increasing family responsibilities (Vereijken et al, 2022).…”

“…There are further impacts feared by families. Parents feared that keeping their members with IDD locked in residential settings to protect them from the pandemic may lead to individuals being unable to resume their social life post‐pandemic (Vereijken et al, 2022 ).…”

“…Embregts et al ( 2021 ) found that negative perceptions and misinformation led to medical doctors placing less value on people with IDD which had implications for prioritizing emergency treatment if required. This concern was reiterated in a Dutch study where families were not informed about how ethical decisions would be made about how their members with ID would be treated should they contract COVID‐19 and require intensive care (Vereijken et al, 2022 ).…”

“…The double standards applied on residential regulations (where support workers would go in and out while parents were not allowed to visit their loved ones) were concerning with respect to how the parenting role often gets disregarded in institutional settings and in society at large (Vereijken et al, 2022 ).…”