Background. The COVID-19 pandemic is expected to have a substantial impact on people with an intellectual disability. The goal of the current study was to explore the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period in the Netherlands. Method. A descriptive qualitative methodology was conducted, using semi-structured individual interviews with six people with a mild intellectual disability. Data were analysed thematically. Results. Three overarching themes were found: (i) Missing social contact and having people close; (ii) Being housebound has changed my daily life; and (iii) Hard to understand the preventive measures. Conclusions. Important insights into the experiences and needs of people with a mild intellectual disability during the COVID-19 lockdown period were gained. These insights are valuable with respect to a potential second COVID-19 wave or a future infection-outbreak.
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Purpose
The level of participation of people with intellectual disabilities (ID) in various forms of work, including daytime activities, appears to be suboptimal. Informal networks of people with ID constitute crucial forms of support, as they can significantly influence occupational choices and opportunities. This review aims to synthesize existing research for the purpose of examining how informal network members perceive the meaning of employment or daytime activities for their relatives with ID.
Methods
Following the PRISMA guideline, a systematic search of scientific literature published between 1990 and July 2022 was conducted. The qualitative results from twenty-seven studies (qualitative and mixed-method) were analyzed using thematic synthesis.
Results
Four overarching themes and several subthemes were identified: (I) Ensuring customized work for my relative; (II) The ongoing need to collaborate and share care responsibilities with professionals; (III) The meaning of work for both my relative and myself; and (IV) Achieving full work participation for my relative is neither straightforward nor self-evident.
Conclusions
Informal networks place great value upon customized and sustainable work opportunities for their relatives with ID, particularly community-based work. While network members play an important role in creating these opportunities, they encounter obstacles resulting from both collaboration difficulties with professionals and employers and public and structural forms of stigma. Researchers, professionals, policy makers, and employers are encouraged to collaborate with individuals with ID as well as their networks to increase the meaningful work opportunities available to them.
Background
Mothers of young adults with profound intellectual and multiple disabilities that live at home are less likely to be on the radar of formal services. We explored the experience of these mothers over the course of the COVID-19 pandemic.
Methods
A qualitative study using three case studies. Transcripts were analysed using Interpretative Phenomenological Analysis.
Results
Two overarching themes with various subthemes emerged. The first theme focuses on the impact of being a mother of a young adult with profound intellectual and multiple disabilities who lives at home during the COVID-19 pandemic. The second theme describes both the vulnerability and resilience of the broader system, as well as its need to experience togetherness.
Conclusions
Families of a young adult with profound intellectual and multiple disabilities exhibit both resilience and vulnerability during the COVID-19 pandemic, underscoring the importance to support and promote the visibility of these families.
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