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Development of the Participatory Music Engagement for Mental Well-being questionnaire (PaMEW): A pilot study with autistic adults
Royal College of Music in Stockholm, Department of Music Education.ORCID iD: 0000-0002-2238-7889
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2024 (English)In: Psychology of Music, ISSN 0305-7356, E-ISSN 1741-3087Article in journal (Refereed) Submitted
Abstract [en]

Research about autistic people’s subjective experiences with music and its impact on their well-being is limited, despite its common presence in public spaces and support services. To provide an empirical framework and tools for future research, we examined the relevance of the participatory music engagement for mental well-being model (Perkins et al., 2020) for autistic adults. The model outlines four pathways through which music supports well-being: managing and expressing emotion, providing respite, facilitating self-development, and facilitating connections. Based on the model, we developed a new questionnaire, the Participatory Music Engagement for Mental Well-being (PaMEW), and collected responses from 63 autistic adults. We found that most respondents thought the items relevant to how they experience the relationship between music and well-being, the factorial structure of their responses aligned with the model, and their comments reflected the four pathways, though they also highlighted nuances not covered by the model. The study underscores the need for nuanced tools that reflect the unique ways autistic individuals use music to support their well-being, suggesting future revisions of PaMEW in collaboration with the autistic community to enhance its relevance and clarity.

Place, publisher, year, edition, pages
2024.
Keywords [en]
Autism, music, questionnaire development, validation, well-being
National Category
Music Psychology Other Health Sciences
Identifiers
URN: urn:nbn:se:kmh:diva-5776OAI: oai:DiVA.org:kmh-5776DiVA, id: diva2:1951398
Available from: 2025-04-10 Created: 2025-04-10 Last updated: 2025-09-10Bibliographically approved
In thesis
1. The roles of music in the well-being of autistic adults
Open this publication in new window or tab >>The roles of music in the well-being of autistic adults
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

While music-based support services have been widely implemented for autistic people, their subjective experiences with music remain underexplored. This thesis investigates the roles of music in the lives of autistic adults, emphasising its impact on well-being. Drawing on Self-Determination Theory (SDT), particularly the basic psychological needs for autonomy, relatedness, and competence, it aims to provide a framework for understanding both the positive and negative effects of music, thereby advancing research and informing future interventions.

The thesis consists of three empirical studies. The first two studies aimed to explore autistic people's musical experiences and establish a framework that could provide a theoretical common ground for the existing exploratory studies. Studies I and II involved in-depth interviews with 13 autistic adults (aged 24–69). In the first study, a bottom-up thematic analysis identified emergent themes, while the second study applied a top-down approach using predefined categories derived from SDT. The aim of the third study was to develop and test a questionnaire assessing how people engage with music to support their well-being. Using a mixed-methods design, we analysed the answers of 63 autistic adults who filled out our questionnaire, as well as gave qualitative feedback on how clear the items were and how well the items reflected their experiences of music and well-being. 

Findings show that autistic adults experience musicking as both beneficial and detrimental, depending on the context. SDT seems to be a promising theory for investigating the mentioned context, given how important a sense of self-determination is in music engagement. Furthermore, the thesis provides an example of how we can extend and adapt models and theories developed on the general population to its sub-populations and use them to create assessment tools. By integrating autistic perspectives into existing theories and models, such as SDT, this work calls for a more pluralistic approach to understanding music engagement, one that respects the heterogeneity of people and agency of individuals and actively considers the potential for harms and negative experiences.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, 2024. p. 108
Keywords
autism, music, musicking, well-being, self-determination, harm, negative effects, interview, questionnaire, neurodiversity, autonomy, relatedness, competence, adults, accessibility, representation, cultural citizenship, basic psychological needs
National Category
Health Sciences Psychology Music
Identifiers
urn:nbn:se:kmh:diva-5777 (URN)978-91-8017-792-4 (ISBN)
Public defence
2024-11-15, Nathan Milstein hall, Valhallavägen 105, Stockholm, 09:30 (English)
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Supervisors
Available from: 2025-04-29 Created: 2025-04-25 Last updated: 2025-09-10Bibliographically approved

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