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Connecting with Patient Experience: Participation – The Basics

Siobhán Clancy with Emma Eager

Participation – The Basics has been devised by Siobhán Clancy, Artist in Residence on Helium’s Fireflies Project at Temple Street Children’s University Hospital and a Lead Artist on Helium’s Two Suitcases community film project, with Emma Eager, Helium Arts’ Project Manager.

What does participation look like in a healthcare setting? Health settings pose unique challenges to participation. We advise artists working in these settings to carefully consider potential barriers to participation. These barriers might be physical, social, or psychological so be prepared to improvise ways of overcoming them during the project development stage and on site. A core part of an artist’s role is creative problem-solving around creating the conditions for cultural experiences.

For Helium Arts, participation is an invitation and the invitation places the child’s ideas, interests and passions at the heart of the work. An understanding of the many ways the healthcare environment can impact on creative engagement is vital. In the following sections, we have attempted to offer some insights and tips that will help you to develop this understanding. Key to your success is a partnership approach with the healthcare provider from the outset. This includes establishing a good rapport and structuring regular exchanges where you can discuss both the practical and aspirational aspects of the work you propose to do.

1. Getting Started

There can be many challenges to getting arts projects off the ground in healthcare settings. We feel it is important to acknowledge this from the outset so that those with aspirations to produce quality cultural experiences (i.e. artists, social care workers, healthcare workers etc.) do not feel discouraged when you encounter setbacks. Forewarned is forearmed. Key to success in this field is a) a strong support network, b) clear objectives and c) good communication.

A) Support Network

As previously mentioned, key to success is a partnership approach from the outset. Creative and health workers need to find a way to work together to develop and deliver worthwhile projects. Finding advocates in the healthcare setting is a necessary first step for artists. These advocates can help artists by introducing them to key people that will support sustained access to the target group. They are the ‘gate-keepers’: facilitating access to potential participants and advising artists on their needs in order to ensure maximum engagement. They are also in a position to observe the beneficial outcomes of artistic processes and can act as champions of the arts in their conversations and meetings with colleagues who may, in turn, find ways to support artists. We cannot overstate the value of participant testimony in communicating the merits of a project. We advise that every project has a strong evaluation process that facilitates feedback and the gathering of testimony in addition to metrics that capture wellbeing outcomes. Monitoring forms are also very helpful in capturing developments and acknowledging achievements over time.

A support network can be enhanced by other roles also. Where budget allows, engaging a co-ordinator or project manager is recommended to support the progress of this support network for the long-term benefit of the project. Delegating responsibilities such as communications, publicity, budgeting and project accountancy, evaluation design and report writing to a project manager can alleviate administrative burdens from the artist who is then freed up to focus on creative work.

Documentation of a project is crucial to capturing and communicating its achievements so we also advise the engagement of a photographer or videographer as appropriate and as the project budget allows. See Section 7 on ‘Documentation and Sharing’.

B) Clear Objectives

It almost goes without saying that in order to achieve goals we must first set them but it is worth emphasising how important clarity of purpose is for all stakeholders. Finding ways to communicate your objectives in a language that is accessible to all is crucial. While there is a place for poetics, clear, short and specific points will serve you best in the long run in the applications, emails, reports, presentations and articles that are part and parcel of working in this field. Let the art work speak for itself but make sure to write out a cohesive manifesto. Include artistic aspirations but don’t discount the health benefits in their articulation.

C) Good Communication

As in every relationship, communication is key. People working in the health and arts sectors may be used to communicating in very different ways, so it is especially important to find ways to understand one another and keep channels of communication open.  Setting realistic expectations is essential and this means pre-empting assumptions about each person’s role and what they can feasibly achieve in the lifetime of a project. So knowing and communicating your limitations is just as important as advertising one’s potential.

For first-time artists working in health settings, the variety of health workers’ roles and the hierarchal order can be confusing. Seeking out information to familiarise yourself with the established systems within your working environment can help you orientate yourself better and understand who to talk to and when.

We find that co-writing an MOU (Memorandum of Understanding) is a good way to make sure everyone has a comprehensive knowledge of what the objectives of a given project are and how it is proposed they be achieved. The exercise of putting the document together is in itself a useful way to clear up any misunderstandings or misconceptions and acknowledge shared visions. An MOU can include a Statement of Intent and link to important documents such as:

– A Health and Safety Statement
– Infection Control Guidelines
– Consent Forms
– Release Forms
– Contact Forms
– Emergency Procedures
– Report Procedures
– PR Plan
– Outline of Roles and Responsibilities
– Terms and Conditions

Contracts should be drafted by a project manager to clearly outline the role and responsibilities of project personnel, especially the artist(s).

Useful Resources

‘Participatory Arts Practice in Healthcare Contexts: Guidelines for Good Practice’ (2009)
Publisher: Waterford Healing Arts Trust (WHAT) & HSE South Cork Arts & Health Programme

‘Creating Magic: A Handbook for Developing Arts Projects with Young People’ (2013 edition)
Publisher: National Youth Council of Ireland

‘The Arts & Health Handbook: a practical guide’ (2003)
Publisher:  Arts Council of Ireland

2. Identifying potential barriers to participation

To make the arts accessible, we must consider the barriers to participation. Helium Arts subscribes to the social model of disability with regard to how we address disabling conditions experienced by our participants.

For some, barriers to accessing cultural experiences are physical and for others they are intellectual or emotional. It is important that the artist collaborator has enough information before meeting a potential participant to gauge how best to support their active participation in an activity. It is not important that the artist collaborator knows the full medical history of the participant, just the essential factors that affect their participation. Below is a handy checklist.

Before reading, please note that the words used reflect the preferred language of participants encountered by artists working on Helium projects recently. Remember that the full identity of the participant is not defined by their health experience e.g. a phrase like ‘Brian manages asthma’ infers more agency than ‘Brian suffers from asthma’. It is important not to make assumptions about how participants want to describe their conditions, experiences or identities. Accessibility can be compromised by alienating attitudes as much as by isolating infrastructures or systems. We recommend that artist collaborators always ask staff, parents and participants as appropriate. For young people, building the confidence to state their preferences, be heard and correct mistakes or false assumptions is a crucial first step in the experience of creative self-expression.

– How is the participant’s hearing? Do they have any preferences about sound levels

– Is the participant responsive to sound? Are there any sounds that are uncomfortable for the participant?

– How is the participant’s sight? Do they have any preferences about light levels?

– Is the participant responsive to visuals or motion? Are there any colours, shapes or types of movements that are uncomfortable for the participant?

– Are there any other considerations with regard to sensory stimulus that are important to be aware of prior to meeting the participant e.g. touch sensitivity, scent sensitivity etc.

– Is the participant verbal?

– What languages does the participant feel comfortable using?

– Are there any trigger words or topics to avoid in a conversation?

– Does the participant have any special needs, an intellectual disability or a learning difficulty that should be taken into consideration when making conversation or giving directions?

– How is the participant’s mobility? Are they physically restricted in any way or have they been advised to keep any area resting? Are there any considerations about seating/lying/standing positions?

– If the health advisors are encouraging the participant to be more mobile, what are the limitations within which we can move around in under supervision of staff?

– Are there any time factors to be conscious of when working with the participant e.g. an upcoming appointment, meal time, prayer time, discharge time etc?

3. Navigating Environmental Constraints

You might also want to ask questions about the environment in which you will work with a participant before entering, for example:

– Is this an isolation ward?*

– Is there a device to call healthcare staff in an emergency?

– Do we need to be conscious of noise levels?

– Do we need to be conscious of temperature levels? If so, can we make any adjustments with windows/air con etc?

– Do we need to be conscious of the amount of light in this space? If so, can we make any adjustments with curtains/lighting etc?

*Some things to know about working in an isolation ward:

– Participants are usually in isolation to stop their infection from affecting anyone else e.g. participants carrying MRSA. In this situation, before beginning work with the participant you are advised to check with your own doctor that potential infection will not adversely affect you (particularly in the case of pregnancy, healing wounds etc).

– On rare occasions, participants are in isolation wards to prevent them being infected by an infection carried by someone else. For example, participants with Cystic Fibrosis are advised not to mix: “With respect to socialising, the key risks are close physical contact, contact within conversational distance and prolonged duration of contact such as overnight functions under the same roof.” – Cystic Fibrosis Ireland

– The health team will advise you on preparing to enter an isolation ward. Usually, you are requested to wear protective items i.e. gloves, apron and shoe covers. Sometimes, but not always, you will also be asked to wear a face mask. On completing your work in an isolation ward, you will remove all of these items and put them into an appropriate nearby bin. If re-entering the isolation ward or entering a different ward, you must put on new protective items.

– Any art materials that you bring into an isolation ward need to be new (i.e. unused by anyone else). Generally, we recommend that they are unopened in their packets. These materials can be left with the patient in isolation to prevent cross-infection afterwards.

4. General tips for infection control

Basic Tips

– Understand the requirements for each condition / illness
– Consult with health staff regarding precautions
– Wear appropriate protective clothing
– Regularly sterilise hands and implement
– In isolation wards, use unopened packages
– Never take an item from an isolation / communal ward to another isolation ward e.g. a stuffed toy
– Never have food or drink in the workspace
– Choose materials carefully i.e. non-toxic products

Art materials

It is critical that materials used with participants whose health is compromised adhere to the highest standards of quality and safety. Feathers, felt, fabric and other fun materials can easily spread bacteria through the accumulation of dirt or dust or simply through contact with naturally occurring oils from the body that become absorbed. Even paper is a concern because of its absorbency potential. Follow these basic steps to avoid infection:

– Limit access to materials and tools by multiple users.

– Advise users (including yourself) to wash hands and use a sterilising hand gel before and after using tools.

– Wipe down tools with sterilising wipes before and after use.

– Thoroughly clean your storage for materials at the beginning of every day before use.

– Replenish art material stocks frequently. As this is likely to eat into budgets, it is advisable only to remove from packets as much as you feel is needed per interaction and not much extra.

– Where possible, return tools to containers that are cleanable such as jiffy bags and use them as little as possible in non-sterile settings.

– Use a vacuum or, for sensitive items, a handheld air pump to remove dirt or dust particles.

– If a tool cracks or breaks, place tape over the area to prevent cutting/scratching risks. Replace the tape after each user. Replace the item as soon as possible.

– Wash any cloth-based materials immediately after use.

– Bring materials in unopened packages into isolation wards and leave them behind to avoid cross-infection.

Technology

When using any technological devices (smart phones, iPads, laptops etc.), follow these basic steps to avoid infection:

– Limit access to devices by multiple users.

– Advise users (including yourself) to wash hands and to use a sterilising hand gel before and after using devices.

– Wipe down devices and related cables with sterilising wipes before and after use

– Where possible, use a protective, cleanable cover to keep dirt or dust from transferring between devices and users. We find waterproof ‘Otter Boxes’ are particularly good for phones and iPads.

– Use a vacuum or, for sensitive items, a handheld air pump to remove dirt or dust particles.

– Cover keyboards with wipe-clean, transparent protective sleeves.

– As mentioned above, if an item cracks or breaks, place tape over the area to prevent cutting/scratching risks. Replace the tape after each user. Replace the item as soon as possible.

– Store devices and related cables in airtight containers such as jiffy bags and use them as little as possible in non-sterile settings.

For further tips on materials and equipment when working in healthcare settings, check out ‘What’s in the case? Packing art materials for healthcare environments.’

5. Connecting with the person

A. Introducing yourself

It is policy in most healthcare settings that workers wear uniforms and carry identity cards. If you don’t have a uniform, it would be helpful to wear something that will clearly communicate your role as artist collaborator in this environment e.g. a branded t-shirt or apron.

It is good practice in most healthcare settings to introduce oneself by name and role to a patient or client to redress the sense of imbalance that can taint interactions where staff may have a lot of information about a patient but not vice versa.  You are advised to do the same. Often a staff member will introduce you first to a participant but it’s up to you to explain what exactly you do and to break the ice. A number of resources can be helpful in this.  We have developed a set of ‘Staff Cards’ that participants can colour and collect when they meet a staff member, filling the cards in with information about each personality as they get to know them. Below is a staff card created on a Helium Arts workshop for third year nursing students taking part in the elective Arts and Health Module at UCD.

Staff card created by UCD Nursing Studies student

One of our artist collaborators used to print credit-card sized images of work made previously with young people. You may want to bring along some laminated photo prints of work already made to indicate the possibilities of working with you and demonstrate where your skills lie.

You can prepare some ice-breaking activities. Here are some examples:

1. Get to know each other by playing an icebreaker game. Two Truths and a Lie is one we like: participant and artist tell each other 3 things about themselves. One of these things is a lie and the other must guess which one.

2. Invite the participant to pull an art material/ tool from a bag/box then suggest what to do with it (Check out ‘What’s in the Case?’). On Helium’s hospital-based artist in residence programme, the artists have used bedside Conversation Boxes as ice-breakers and art starters. See, for example, artist Rachel Tynan’s Conversation Box below.

3. Invite the participant to pull some words out of a bag/box and make up a story, drawing or performance inspired by them.

4. Invite the participant to view some images (see below) and describe what themes they inspire. Then devise a creation in response.

5. Offer a number of artistic briefs and invite the participant to choose one to respond to.

Conversation box by Rachel Tynan, Fireflies Project
Artwork images provoke conversation on the Electric Feathers art project with Epilepsy Ireland led by artist Rachel Tynan

(B) Finding out about participants

Even if the staff can tell you about the interests of a participant, it is worthwhile to ask them yourself. To begin with, it offers some vital conversation starters. Building a rapport through conversation will support the participant to express themselves more openly and take creative risks with the artist collaborator. Giving them the opportunity to voice their own preferences is an easy way to show the participant you are interested in them as individuals and open to accommodating their unique experience in the creative process.

One thing to keep in mind is that while healthcare staff can tell you many things about a patient’s condition, they cannot tell you how that patient feels at a given moment. So it is very important that question is directed to the participant only. It is equally important to recognise that as someone they may have only just met, a participant may not want to share their feelings straight away. Artist Rachel Tynan developed the ‘Barometer’ as a means for participants to check in with their feelings and communicate them in code on Helium’s Fireflies Project. It is up to each participant to decide if they want to share that code with another person.

 

Barometer on Helium’s Fireflies Project. Re-creation in artist Rachel Tynan’s studio.

(C) Dealing with resistance

Another thing to keep in mind is that participants, particularly from the age of 8 upwards, often have ambivalent if not negative feelings about art and their artistic abilities. This is due to a number of factors, not least because they may have had unsatisfactory experiences of the arts in their education or social lives that left them feeling bored, excluded or feeling inadequate. An invitation to participate in an artistic process is more likely to be accepted if it is presented in a way that relates to the things that participants are interested in. For example, finding out that a participant likes music and then spending time together listening to and discussing bands, songs, gigs, concerts, album designs and music video styles is more likely to engage that person in composition, design or video production than starting the interaction with a keyboard, set of markers or camera. When it comes to participants that state they have no interest in the arts at all, it is often the case that their interests in media and social media will be an incentive to finding interesting ways to document and share the interests they do have using artistic processes.

Ultimately, it must be recognised that key to participation is consent. Non-participation must always be an option. If it is not, then we are not working with participants, we are working with subjects who have been coerced. While we can encourage people to try something new, we must respect their desires not to get involved. This is particularly important for those who find their agency compromised in other ways in our society due to disability, minority group membership, sexual or gender identities or age (under 18s and older people especially).

A respect for consent is demonstrated in the language we use and the clarity with which we communicate as well as frequent checking in and invitations for feedback.

(E) Time is the most important resource

Time is the key factor in good participant engagement. An artist must keep in mind how to manage your time in a very busy, pressurised environment that potentially has more people who would like to see you than you have time to see. In hospitals, clinics and most other health settings, efficiency is very important. However, a culture that develops around efficiency as a value often prioritises speed.  In contrast, artistic processes and relationships often benefit from quality time spent together which requires more time (but perhaps less frequency) than the average medical interaction. For these reasons, it can appear to be a slower process to healthcare workers observing. Communicating clearly and openly with healthcare workers and remaining flexible around medical schedules and emerging needs will ensure harmony in the health workplace.

It is very common for artists to attempt, with the best of intentions, to adapt their way of working so much to the demands of the health setting that we find ourselves working at a pace that mimics that of healthcare workers but is out of sync with our own practice, or practicing our habits in an environment that demands a different approach.

6. Stay Healthy Yourself!

Check ahead of time about any vaccinations you are required to have before beginning work in a healthcare setting.

Stay on top of your own healthcare and take precautions against infections that can prevent you from working such as the common cold. Take care of your diet and get enough sleep to build up your immune system and stamina.  Inform your contacts of any changes in your wellbeing e.g. onset of a cold etc.

It cannot be emphasised enough that artists must take their breaks during the working day. As one Play Specialist said to a Helium Arts’ artist-in-residence once: “We have enough to do here. We can’t be picking you up off the floor too!” Start punctually and finish on time. Be sure to hydrate frequently as healthcare settings can have very drying environments due to the warm temperatures. Get fresh air when you can. Take your morning and afternoon breaks. Be sure to relax for at least 30 minutes over lunch to eat properly and aid digestion. Take care of your diet. Decide for yourself whether you need your lunchtime to be spent as a time out from work or as an opportunity to connect with colleagues. Whatever you decide, it is worthwhile to communicate clearly so the intentions behind your actions will not be misconceived which can easily be done in a team-orientated environment.

7. Documenting and Sharing

Participation is based on trust – the young person trusting that the artist is acting in good faith. Trust can break down when the young person is inadequately informed about who may see the work / work-in-progress and in what context. It is important to document work-in-progress and finished work to share ‘moments of celebration’ with participants, as a way of informing the evaluation of the work and to disseminate privately (with the young person’s family or friends) and sometimes publicly. Informed consent here is vital: participants must understand why the work is being documented and give permission, both via parental consent forms (for those under 18) and in person.

Consent forms should include options for private documentation (where the documentation serves as an aid in evaluating the work) and public documentation on platforms including websites, social media, newsletters, print media etc. The young person might like the artwork to be accompanied by their first name rather than the anonymous attribution of ‘a participant.’ Checking with participants how they would like to be acknowledged empowers them in an environment where they often have very little choice, and also engenders trust in the artist. Where the participant’s wishes conflict with parental consent, this will need to be addressed with the parents, either by the artist (depending on the specific circumstances of the project) or via a member of the healthcare team.

Documentation / sharing of work must be included in the MOU (Memorandum of Understanding) between the artist / arts organisation and healthcare provider before the project begins. Images or videos of participants themselves are a separate area of consent. Helium’s hospital-based artists in residence do not take images or recordings of participants during their weekly sessions. Where a participant’s likeness has been documented by a professional photographer, this has been organised in the project planning stage (via the MOU) and where a working relationship has been established between the artist and participant. The participant may decide at a later stage that they no longer wish images of themselves to be included on digital platforms and their wishes must be respected in this regard.

As mentioned before, the role of advocates in the healthcare setting is vital to build support for the integration of artistic practice in these environments. Good documentation of work in progress that is well presented can help them to help you as it draws attention to the creative efforts and their benefits for participants. In the past, we have compiled albums that are updated on a weekly basis and made available to read through. We have decorated notice boards with information and samples of work. We have featured images of work in slideshows on the internal monitor system. We have also installed mini- showcases such as the one pictured above which involved a collection of puppets in the window of a hospital school classroom. Passersby were invited to comment in the speech bubbles on the window. Keep an eye out for a suitable space to share your work in progress and make sure to include documentation in applications for funding and other supports.

8. What do we mean by collaboration?

For Helium Arts, arts participation is an invitation to co-create work, with the child’s ideas, interests and passions informing the vision for the work. While this work does involve facilitating the creative expression of another, our aim is to generate relationships that are not defined as facilitator-participant but more like collaborators.

Collaborating with an adult artist may be a very different experience to the one that young people are accustomed to. There are many ways in which society reinforces subtle and not-so-subtle hierarchies in creative exchanges. Most young people are used to the ‘artist teacher – student novice’ model which is not dissimilar to the classical ‘master – apprentice’ paradigm from medieval times. These models infer inexperience and deficiency of skill in the student/novice/apprentice. Helium Arts wishes to recognise the lived experience and innate skills of young people by virtue of their subjectivity in the contexts within which they are situated. From our perspective there is no ‘lack’ but rather ample material and ability for creative expression and also, as with any person of any age, the potential to develop further. The perspectives and experience of young people offer rich and inspiring material for cultural production. Not only this, but they are far more expert in methods of engaging other young people as audience or participants than we as adults can ever hope to be because they understand what interests their peers. Our approach to artistic production with young people is defined by a passion for peer education where we consider ourselves as creative peers of youth.

Our cultural conditioning means that it is easy to slip into practices that replicate classical hierarchal dynamics. Healthcare settings are very much defined by hierarchies and ‘chains of command’ or ‘reporting systems’. In these environments, there can be an expectation that artists will operate within a similar structure. So it is important from the outset to communicate both the value of collaborative approaches and the means by which it can be defined and engaged with. Below is a mental checklist that Helium Arts artists have prepared for ourselves as a way of ensuring we practice what we preach:

Am I………..

– Listening?

– Developing ideas that have emerged through unique interactions with my collaborator(s)?

– Discussing ideas that I have proposed and remaining open to suggestion and modification?

– Checking in with my collaborator frequently?

– Ensuring there is equal input into decision-making with regard to methodologies of production and aesthetic choices?

– Checking that my collaborator does not feel left out or burdened by an unequal amount of responsibility?

– Sharing a vision for the creative outcome?

– Delegating tasks that I identify and fulfilling delegated tasks that others have identified?

– Co-directing the creative process?

– Sharing ownership of the artistic outcomes?

– Acknowledging the creative contribution of participating parties in all publicity?

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