Aims
Research and methodology: To evaluate and validate art-based research protocols across EHDN sites and to develop a shared toolkit of creative methodologies, including photovoice, narrative, film, music, dance, and more.
Wellbeing and therapeutic benefit: To develop art-based interventions and creative expression for clinical settings, together with HD-specific outcome measures. Creative methodologies offer non-verbal modes of engagement. They can capture perspectives that are often underrepresented in traditional research, including those of people from minoritised communities and people with more advanced HD progression.
Prevention and public health: To position the arts as a valuable public health resource, consistent with the World Health Organization 2019 review on arts in health, focusing on people impacted by HD and addressing the social determinants of health.
Advocacy and awareness: To support the work of patient organisations and advocacy groups in raising awareness of HD through art-based outputs such as exhibitions, films and campaigns, and to communicate the value of this work across the HD community.
Collaboration: To support and collaborate with other EHDN WGs. Creative approaches can serve both as research methodologies and as interventions, facilitating communication, self-expression, engagement, wellbeing and participation. They also generate insights that complement conventional clinical and research methods. The Art & HD WG intends to support other groups in reaching underrepresented communities, incorporating lived experience into their work, and communicating their findings to a broader audience through artistic expression. The Art & HD WG’s knowledge in these approaches is hoped to provide support to other WGs and also to external clinical and research groups.
Projects
- Hidden World of Huntington’s Disease (Photovoice). Photovoice is a participatory research methodology in which participants use photography and narrative to convey their lived experience. The HD-adapted protocol was co-designed with people with lived experience at the Centre for Precision Health, Edith Cowan University (Cruickshank, Clark, Carratti et al., 2024 to 2025). It follows four steps: reflection, planning, capture and narration. The Australian pilot culminated in a public exhibition attended by more than 150 people from the HD community, advocacy organisations, the arts, clinical care, science and government. The protocol is now being extended by the Art & HD WG to additional countries, and ethics approvals are in progress.
- Dance and Movement. This mixed-methods study examines dance as a form of embodied communication and as a mind-body practice for people with HD. It builds on evidence of benefits for gait, balance, mobility, body awareness and quality of life in neurological conditions. The study combines semi-structured interviews with pre- and post-intervention measures of self-worth, body schema and selfhood, resilience and body composition. It will be piloted at a limited number of sites, with particular attention to the inclusion of minoritised perspectives.
- ASCEND-HD. The WG supports the Wellcome-funded ASCEND-HD project at the University of Leicester, which investigates psychological wellbeing in HD families and includes a dedicated work package on creative health research.
Building on these initial projects, the Art & HD WG will progressively extend its approach to other artistic modalities, such as narrative, film, music, visual art and digital media.
Contact
Lead Facilitator:
Selene Capodarca,
EHDN
Co-lead Facilitator:
Melanie Clark,
Edith Cowan University