| Literature DB >> 34318573 |
Gabriela Pavarini1,2, Lindsay M Smith3, Nicola Shaughnessy4, Anna Mankee-Williams5, Josita Kavitha Thirumalai6, Natalie Russell7, Kamaldeep Bhui1,8,9,10.
Abstract
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.Entities:
Keywords: adverse childhood experiences; arts-based methods; coproduction; ethics; mental health; neurodivergence; participation; participatory research; trauma; young people
Mesh:
Year: 2021 PMID: 34318573 PMCID: PMC8483199 DOI: 10.1111/hex.13314
Source DB: PubMed Journal: Health Expect ISSN: 1369-6513 Impact factor: 3.377
Ethical issues and creative solutions in participatory arts methods for young people with adverse childhood experiences
| Phase of project | Ethical issues | Creative solutions |
|---|---|---|
| Partnership working |
Power: Imbalance of power within research/partner relationships (funding, organisational and societal status). Regulations and infrastructure: Questions as to the appropriateness of the role of REC boards in defining and adjudicating on ethical issues related to interdisciplinary practice. Expertise: Differential expertise, training and understanding in working with young people with ACEs. Expectations: Differential expectations in terms of timeframes, experience, biases, values outputs and codes of practice. |
Conscious challenge and flattening of pre‐existing hierarchy through frontloaded dialogue and structured cultural exchange within a design thinking co‐lab environment, rooted in empathy and young person (user)‐centred. All partners receive training in how to ‘hear’ rather than ‘listen’. Cocreating a code of conduct, set of values and language for the environment and communications. Knowledge and skill set analysis for all project partners including roles, responsibilities and contributions at the outset of the project. Negotiation on expectations and aims. Clear identification and fulfilment of training needs for project partners (formal and informal). |
| Project entry |
Reach and accessibility: Enabling breadth and depth of participant reach by transdisciplinary arts/health study design identifying and addressing stigma, anonymity, confidentiality, equality issues and the intersecting spaces between these elements that challenge meaningful reach and accessibility through arts‐based approaches. Consent: Ensuring informed consent can be provided by children and young people for participation in the intervention; participation in the research; and the collection and sharing of data. Legislation: Facilitating the delivery of multilayered organisational and legislative requirements for participation, intervention, sharing of data and creation and curation of art outputs. Clarity of obligations for confidentiality versus information sharing with parents/carers and wider systems. |
Within a design thinking colab environment, cocreate study design with young people that also mitigates the potential pressurising effect of ‘study design’ and outcomes focus on artistic experience as a priority and facilitates reach and accessibility for participants. Proactive consultation with parents (where appropriate), and other services and youth organisations to seek guidance, support and shared decision making regarding safeguarding. Consideration of the appropriateness of risk screening methods depending on the project and the participants. Cocreate with children and young people; informed consent documentation and guidance documents for all aspects of the project that is accessible, age appropriate, with supporting contemporary communication channels with messaging cocreated and codelivered with young people. Clear, accurate and accessible communications about the scope of the project including arts and health aims and processes. |
| Participation |
Communication: Awareness, value, methods and respect of the multiplicity of communication including verbal and nonverbal language, cultural norms, experiences, translation and interpretation and channels. Trust: Meaningful participation driven by genuine creative enquiry that may raise perceived levels of risk to/for participants and therefore drive a more limited ‘statutory requirement’ approach to activity and ethics. Distress: Potential for retraumatization in exploring own experiences and those of others in the group. Monitoring and support: Challenges of monitoring the impact of participation (mental and physical health). (1) Outside of the participant activity and schedule e.g., flashbacks or rumination, (2) supporting disclosures and meaning making from ACEs. Subjectivity: Issues of ‘truth’, honouring participant interpretation and representation in any artistic abstraction with varying levels of sensitivity to art products, visual, auditory and immersive. |
Developing creative confidence by cocreating approaches that: Respect and embed the Rights of the Child. Enable equality and embrace diversity. Address implicit bias. Respect pronouns and identity. Implement communication badge approach (e.g., sign language). Embed a ‘traffic light’ system for feelings and risk. Enable participation pivot if the environment changes (e.g., COVID‐19). Create a safe/sensory‐sensitive space. Develop and embed a code of practice/group agreements on behaviours. Use of ‘time‐out’ areas. Provide appropriate support in the event of escalation of need. Discuss signs and symptoms of distress and identify with young people acceptable communication methods within and between practice sessions including feedback mechanisms. Use of mentors and peer support initiatives to monitor and manage risk. Between‐workshop communication and consultation with parents and service supports. |
| Dissemination |
Authorship and ownership: Rights of acknowledgement versus protection of anonymity. Public domain exposure: Potential for stigmatisation through surfacing of personal narratives expressed through art, with the potential of audience/viewer misinterpretation or inadvertent harm to audience. Cultural differences: Interdisciplinarity difference in understanding and cultures of arts‐based data analysis, quality, aesthetics and value, publication, collaboration and notions of ethical research. Potential for exploitation of participants and their artwork for others' gains. |
Recurrent discussion with participants about rights and desires for acknowledgement in various outputs, including consideration of potential later regrets if pieces of work are/are not personally identified in relation to the project. Right to forget or change narrative. Explore consent for potential dissemination/discussion of work as part of pseudo‐anonymized vignettes and agree parameters for use of work and personal information in vignettes. Establish individual rights for use of participants' own artwork for their own purposes. Within a design thinking colab environment throughout the lifetime of the project cocreate the dissemination methodology with all partners and young people rooted in empathy and young people (user)‐centred, whilst considering audience impact and social responsibilities. Engagement with international arts‐based health researchers and practitioners on best practice in developing project‐specific frameworks regarding rights and ownership, safeguarding and communication. |