Support in Daily Living for Young Adults with Neurodevelopmental Conditions in Sweden: A Qualitative Description of Current Practice

Abstract

In Sweden, people living independently and requiring daily living support can access ‘housing support’, a form of practical, educational, and social support provided by the municipalities. About two-thirds of those receiving this support have neurodevelopmental conditions, primarily autism or ADHD. Many are young adults in the process of adapting to new roles and expectations in different life domains, including education, work, and accommodation. This study aimed to provide a qualitative description of support workers’ views on current practice in housing support for young adults (aged 18 to 29) with neurodevelopmental conditions. Semi-structured telephone interviews were conducted with 34 housing support workers across 19 Swedish regions. An inductive qualitative content analysis approach was used. The interviews depicted a complex service, subject to organizational aspects (roles, responsibilities, availability, and allocation), the joint effort of key players (young adults, relatives, and support workers), and practical aspects of service provision (finding common ground for the work, and delivery of support). Some elements of the service were poorly designed for the target group. The support workers expressed a need for more knowledge about neurodevelopmental conditions, but also described new insights related to remote delivery of support. The results raise important questions about how housing support should be organized and delivered to strike the right balance between support and autonomy, meet specific needs, and ensure equal services across municipalities. Future research should adopt multiple perspectives and approaches, to help translate best practice and available evidence into a flexible and sustainable service.

‘If I Don’t Have My Support Worker in the Room…’: A Multi-perspective Mixed Methods Study of Remote Daily Living Support for Neurodivergent Young Adults

“…Ten support domains, common for both autism and ADHD, were selected for survey questions using the brief ICF Core Sets for autism (Bölte et al, 2019) and ADHD (Bölte et al, 2018). The selected support domains have previously been pinpointed as salient areas of functioning for these groups (Bölte et al, 2018(Bölte et al, , 2019, and harmonize with the support needs of young adults with support in daily living in general (Andersson & Gustafsson, 2014;Brolin, 2016;Löthberg et al, 2023). Survey questions were operationalized for the following ICF codes: d175 + d177 (Solving problems + Making decisions); d230 (Carry out daily routine); • It is important to ensure that staff attitudes do not lead to an unequal service provision • When using remote support, it is important to strive for clarity, balance, and timing EW, JM, and UJ), the original subcategories were then revised in an iterative process (Elo et al, 2014;Graneheim et al, 2017).…”

“…This service includes the provision of practical, educational, and social support to enable individuals to manage their daily lives in ordinary housing (Swedish National Board of Health and Welfare, 2010). A recent qualitative study (Löthberg et al, 2023) of support workers' experience revealed that increasingly elements of this support are provided remotely, via digital devices. The support workers described that the use of digital technology had accelerated during the COVID-19 pandemic and that these changes in service provision had resulted in new insights into how support can be tailored to meet different needs.…”