Playing with data differently: engaging with autism and gender through participatory arts/music and a performative framework for analysis.

There are increasing demands for Participatory Arts-Based (PAB) programs involved in health research to better evidence outcomes using robust quantitative evaluation methodologies taken from science, such as standardized questionnaires, to inform commissioning and scale-up decisions. However, for PAB researchers trying to do this, barriers arise from fundamental interdisciplinary differences in values and contexts. Researchers are required to navigate the tensions between the practice-based evidence produced by the arts and the evidence-based practice sought by psychologists. Consequently, there is a need for interdisciplinary arts-science collaborations to produce alternative methods of evaluation that are better aligned to PAB approaches, and which combine systematic rigor with a sensitivity to the values, contexts and strengths of this approach. The current article centers on the development of an alternative transdisciplinary analytic tool, the Participatory arts Play Framework (PP-Framework), undertaken as part of an arts-psychology collaboration for a UK AHRC-funded PAB research project: Playing A/Part: Investigating the identities and experiences of autistic girls. We present details of three stages in the development of the PP-Framework: 1. preliminary emergence of the framework from initial video analysis of observational data from participatory music and sound workshops run for 6 adolescent autistic girls (aged 11-16); 2. identification and application of modes of engagement; and 3. further testing of the framework as an evaluation tool for use in a real-world setting, involving professional musicians engaged in delivery of a creative music project at a center for homeless people. The PP-Framework maps types of participation in terms of performative behaviors and qualities of experience, understood as modes of play. It functions as a vehicle for analyzing participant engagement, providing a tool predicated on the processes of working in creative participatory contexts while also being sensitive to the esthetic qualities of what is produced and capable of capturing beneficial changes in engagement. It offers a conceptual approach for researchers to undertake observation of participatory arts practices, taking account of embodied engagement and interaction processes. It is informed by understandings of autistic performativity and masking in conjunction with an ecological understanding of sense making as being shaped by environments, social relations and sensing subjectivity. The framework has the potential to be a bi-directional tool, with application for both practitioners and participants.

Practitioner Review: Effectiveness and mechanisms of change in participatory arts-based programmes for promoting youth mental health and well-being - a systematic review.

BACKGROUND: Participatory arts-based (PAB) programmes refer to a diverse range of community programmes involving active engagement in the creation process that appear helpful to several aspects of children's and young people's (CYP) mental health and well-being. This mixed-methods systematic review synthesises evidence relating to the effectiveness and mechanisms of change in PAB programmes for youth. METHOD: Studies were identified following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach. Eleven electronic databases were searched for studies of PAB programmes conducted with CYP (aged 4-25 years), which reported mental health and well-being effectiveness outcomes and/or mechanisms of change. A mixed-methods appraisal tool assessed study quality. A narrative synthesis was conducted of effectiveness and challenges in capturing this. Findings relating to reported mechanisms of change were integrated via a metasummary. RESULTS: Twenty-two studies were included. Evidence of effectiveness from quantitative studies was limited by methodological issues. The metasummary identified mechanisms of change resonant with those proposed in talking therapies. Additionally, PAB programmes appear beneficial to CYP by fostering a therapeutic space characterised by subverting restrictive social rules, communitas that is not perceived as coercive, and inviting play and embodied understanding. CONCLUSIONS: There is good evidence that there are therapeutic processes in PAB programmes. There is a need for more transdisciplinary work to increase understanding of context-mechanism-outcome pathways, including the role played by different art stimuli and practices. Going forward, transdisciplinary teams are needed to quantify short- and long-term mental health and well-being outcomes and to investigate optimal programme durations in relation to population and need. Such teams would also be best placed to work on resolving inter-disciplinary methodological tensions.

Autistic phenomenology: past, present, and potential future.

We are now at a transition point in autism conceptualisation, science, and clinical practise, where phenomenology could play a key role. This paper takes a broad view of the history of phenomenological perspectives on the autism concept and how this has evolved over time, including contemporaneous theory and methods. Early inquiry from a clinical perspective within the tradition of classical continental phenomenology, linked closely to the consideration of schizophrenia, is contrasted with emerging observations of child development and a period in the second half of the twentieth century of scientific inquiry into a behavioural autistic phenotype where there was little or no phenomenological aspect; a phenotype that has determined the recent scientific and clinical conceptualisation of autism within current nosology. We then mark a more recent reawakening of interdisciplinary interest in subjective experience and phenomenological inquiry, which itself coincides with the increasing prominence and salience of the neurodiversity movement, autistic advocacy, and critical autism studies. We review this emerging phenomenological work alongside a contemporaneous clinical phenomenology perspective and representations of autistic experience from within the extensive literature (including life writing) from autistic people themselves; all perspectives that we argue need now be brought into juxtaposition and dialogue as the field moves forward. We argue from this for a future which could build on such accounts at a greater scale, working toward a more co-constructed, systematic, representative, and empirical autistic phenomenology, which would include citizen and participatory science approaches. Success in this would not only mean that autistic experience and subjectivity would be re-integrated back into a shared understanding of the autism concept, but we also argue that there could be the eventual goal of an enhanced descriptive nosology, in which key subjective and phenomenological experiences, discriminating for autism, could be identified alongside current behavioural and developmental descriptors. Such progress could have major benefits, including increased mutual empathy and common language between professionals and the autistic community, the provision of crucial new foci for research through aspects of autistic experience previously neglected, and potential new supportive innovations for healthcare and education. We outline a programme and methodological considerations to this end.

Ethical issues in participatory arts methods for young people with adverse childhood experiences.

CONTEXT: Participatory arts-based methods such as photovoice, drama and music have increasingly been used to engage young people who are exposed to psychosocial risks. These methods have the potential to empower youth and provide them with an accessible and welcoming environment to express and manage difficult feelings and experiences. These effects are, however, dependent on the way these methods are implemented and how potential ethical concerns are handled. OBJECTIVE: Using the current literature on arts-based health research as a foundation, this paper examines ethical issues emerging from participatory arts methods with young people with traumatic experiences. RESULTS: We present a typology covering relevant issues such as power, accessibility, communication, trust and ownership, across the domains of partnership working, project entry, participation and dissemination. Drawing on our extensive clinical and research experiences, existing research and novel in-practice examples, we offer guidance for ethical dilemmas that might arise at different phases of research. CONCLUSION: Adequate anticipation and consideration of ethical issues, together with the involvement of young people, will help ensure that arts methods are implemented in research and practice with young people in a fair, meaningful and empowering way. PATIENT OR PUBLIC CONTRIBUTION: The issues reviewed are largely based on the authors' experience conducting participatory research. Each of the projects referenced has its own systems for PPI including, variously, consultations with advisory groups, coproduction, youth ambassadors and mentor schemes. One of the coauthors, Josita Kavitha Thirumalai, is a young person trained in peer support and has provided extensive input across all stages.

Stronger together: learning from an interdisciplinary dementia, arts and well-being network (DA&WN).

Background This paper reports on the learning from a 12-month interdisciplinary project (Dementia, Arts and Wellbeing Network- DA&WN) and its activities. These featured a series of four workshops on dance, visual art, theatre and music. The network was comprised of clinicians, academics, creative practitioners and people with lived experience of dementia and their carers. Methods The workshops were designed to draw out tacit knowledge about well-being in dementia through an action-based learning and research approach. This included, guided activities combined with reflective group discussions, visual documentation and baseline and follow-up questionnaires. Results Outcomes included new collaborations between group members, changes in creative practice for artists, and active and sustained involvement of people living with dementia and their carers in similar opportunities and participatory research. Conclusion This participatory and inclusive workshop model should be considered to develop and enhance interdisciplinary activities in dementia care.

Imagining Autism: Feasibility of a drama-based intervention on the social, communicative and imaginative behaviour of children with autism.

We report the feasibility of a novel, school-based intervention, coined 'Imagining Autism', in which children with autism engage with drama practitioners though participatory play and improvisation in a themed multi-sensory 'pod' resembling a portable, tent-like structure. A total of 22 children, aged 7-12 years, from three UK schools engaged in the 10-week programme. Measures of social interaction, communication and emotion recognition, along with parent and teacher ratings, were collected before and up to 12 months after the intervention. Feasibility was evaluated through four domains: (1) process (recruitment, retention, blinding, inter-rater reliability, willingness of children to engage), (2) resources (space, logistics), (3) management (dealing with unexpected changes, ease of assessment) and (4) scientific (data outcomes, statistical analyses). Overall, the children, parents and teachers showed high satisfaction with the intervention, the amount of missing data was relatively low, key assessments were implemented as planned and evidence of potential effect was demonstrated on several key outcome measures. Some difficulties were encountered with recruitment, test administration, parental response and the logistics of setting up the pod. Following several protocol revisions and the inclusion of a control group, future investigation would be justified to more thoroughly examine treatment effects.