Support in daily living for neurodivergent young adults : current practice and new methods

Background: Support in daily living is a municipal service for individuals with support needs primarily related to mental, behavioural, and neurodevelopmental conditions. The service offers practical, educational, and social support to help individuals living in ordinary housing manage their daily lives. While this service is increasingly being granted to emerging neurodivergent adults, there remains a lack of clarity regarding how the support is provided for this specific group and how it can be further developed.

Aims: The overarching aim of this thesis was to enhance our understanding of the support provided to neurodivergent young adults as they transition into adulthood. Four studies were conducted to examine current practices and test new approaches. Study I provided a qualitative description of current practice. Study II was a feasibility study assessing the addition of the structured TRANSITION programme to regular support services. Study III explores perspectives on remote support elements. Study IV focused on the co- production and feasibility testing of a tool for enhanced service user engagement in designing their support.

Methods: Study participants were young service users aged 18 to 29 and support workers from various municipalities across the country. Study I involved telephone interviews with 34 support workers, which were analysed through qualitative content analysis. Study II used a mixed-methods design, including pre- and post-measures from 26 service users and semi-structured telephone interviews with 11 service users and 9 support workers. In Study III, a convergent mixed-methods approach was used, which included a survey featuring both open- and closed-ended questions alongside online focus group discussions involving 10 service users and 3 support workers. The survey gathered responses from 34 service users and 65 support workers. In Study IV, a tool for enhanced user engagement was co-produced in online workshops with 10 service users and 3 support workers. Thereafter, its feasibility was tested with 15 service users and 11 support workers, using mixed-methods design with pre- and post- measures and semi-structured telephone interviews with 12 service users and 8 support workers. Integrative analyses were conducted through joint displays in Study II and III and narrative weaving in Study IV.

Results: Study I highlights that support in daily living for neurodivergent young adults is a complex support service influenced by organisational aspects, practical aspects of support provision, and the key players' collaborative effort. Some aspects of the service were not adequately designed for the specific needs of the target group, and there was an expressed need for increased knowledge of neurodevelopmental conditions. The findings from Study II indicate that the TRANSITION programme was an acceptable addition to regular support, with service users rating it highly in terms of satisfaction and engagement. The clear structure, the focus on specific goals, and the long-term perspective were particularly valuable features, according to service users and support workers alike. While no serious adverse events were reported, some service users experienced stress related to the programme. Study III suggested that there was a lack of service routines for remote support. While remote contact was seen as a useful complement to on-site support to increase accessibility and user choice, service users were more hesitant than support workers to endorse remote support provision. Service users expressed concerns that this form of support could lead to miscommunication and insufficient interpersonal contact. The findings of Study IV showed that the co-produced structured guide 'Designing my daily living support' was deemed highly relevant and useful by both service users and support workers, in terms of building rapport and engaging service users in exploring and designing their support. Pre- and post- measures preliminary indicated that service users' quality of life improved during the study period.

Conclusion: Supporting neurodivergent young adults transitioning into adulthood is a complex task that requires support services to balance young adults' needs for assistance with their desire for autonomy. To provide functional support that follows young adults' developmental process, the support service may need to be more flexible and responsive to the needs and preferences of young service users. To produce materials aligned with the target group's preferences and values, co-production is a promising research and development approach. The use of structured materials such as TRANSITION and 'Designing my daily living support' were found to be feasible complements to regular support. The enhanced clarity and direction from adding structured materials to current practice may help achieve person-centred support and improve some service users' quality of life. Organisations' readiness to provide resources, such as time, technology, and education/guidance for support workers, may be crucial for providing person-centred and equitable support to neurodivergent young service users.

List of scientific papers

I. Löthberg, M., Hirvikoski, T., Girdler, S., Bölte, S., & Jonsson, U. (2024). Support in Daily Living for Young Adults with Neurodevelopmental Conditions in Sweden: A Qualitative Description of Current Practice. Journal of Autism and Developmental Disorders, 54(8), 3043-3058. https://doi.org/10.1007/s10803-023-06014-6

II. Löthberg, M., Meyer, J., Niman, A., Berggren, S., Hirvikoski, T., Bölte, S., & Jonsson, U. (2025). Feasibility of the TRANSITION program as an add-on to regular daily living support for young adults: an open mixed-methods study. Disability and Rehabilitation, 1-14. Advance online publication. https://doi.org/10.1080/09638288.2025.2459889

III. Löthberg, M., Wirström, E., Meyer, J., Girdler, S., Bölte, S., & Jonsson, U. (2024). '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. Journal of Autism and Developmental Disorders.
https://doi.org/10.1007/s10803-024-06425-z

IV. Löthberg, M., Niman, A., Engström, S., Meyer, J., Wirström, E., Girdler, S., Bölte, S., Jonsson, U. 'Designing my daily living support' - Co- production and feasibility of a structured guide for enhancing service user involvement among neurodivergent young adults. [Submitted]