Authors: Bethany Jay & Dr. Monique Huysamen

Introduction

Supporting Autistic Adults’ Intimate Lives (SAAIL) is a participatory research project exploring how autistic people think adult social care in England can better recognise and support their intimate lives. The SAAIL project is comprised of three phases:

• Policy document analysis
• Interviews and focus groups, which were autistic-led and autistic-only spaces
• Stakeholder co-production workshops, which are the focus of this blog

Including stakeholder workshops as part of a research project’s design can be an exciting and effective way to engage participants, professionals, and other relevant stakeholders in the research findings. It allows us to work with these groups to co-produce research outputs that are relevant and accessible to those most likely to use them.

• Read more about the workshops.
• Read about what we learnt.

Project aim

The primary aim of the workshops was to build our Autism and Intimacy toolkits. We invited some of our research participants as well as a variety of professionals (most of whom were autistic themselves) with expertise and/or lived experience in various areas of autism and intimacy to attend.

We facilitated two co-production workshops online with 28 participants, and participants could attend either one or both. The workshops presented a space for attendees to engage with and help us analyse some of the research data. It also provided an opportunity for attendees to network with one another and share their own work.  

We are proud of the toolkits, and the network that developed from the workshops, so much so that we felt it was important to share our experiences and what we learnt from the process. In this blog, we cover the initial phase of the project, including what we learnt from our participants and any challenges even at this early stage.

Planning and design

In September 2022, we began contacting potential stakeholders and chose to facilitate the workshops online to make participation easier. We also asked research participants whether they preferred online or face-to-face participation and the majority said they would prefer online workshops.

We also offered as many alternative avenues as possible for people to offer suggestions for toolkit content and did not limit co-production to workshop attendance – people emailed written content to us, and we arranged one-to-one meetings with others.  

We wanted everyone that was interested in attending the workshops to be consulted at this stage, so we created a form and emailed it to everyone. The form had an ‘immersive reader’ option, offering the form in accessible formats.  

The form consisted of questions gauging workshop participants’ expectations around the format of the workshop activities, and their initial suggestions about potential toolkit content.

What have we learnt so far?

• Participants wanted all workshop information to be provided at least a week prior.

Having a clear and structured outline of what to expect during the workshops can help create an environment that feels predictable and causes less anxiety.

• Participants want a wide range of topics included.

The workshops need to consider important, and often sensitive, topics in a relatively small amount of time. Therefore, we opted for an online platform with “breakout room” functionality that could provide multiple spaces for discussions in smaller contained groups without compromising on depth, detail, and quality of co-production.

• A platform with accessibility features is an absolute requirement.

MS Teams provided the accessibility features required such as live captioning, muting functionality, and high video contrast.

Technical challenges and solutions

Universities are often less flexible when it comes to considerations around online platforms and data protection. In our case, our university strongly advises that we use, MS Teams for workshops. However, many participants were not familiar with this platform, but we were left with little choice.

One of our participants suggested that we provide “tech trial runs” in the weeks leading up to the workshops so participants could test logging in and using the online platform with us. This would allow them to feel more confident and also helped us flag potential glitches we may otherwise not have pre-empted.

Unfortunately, this provision was not utilised by everyone, and we did still have some people struggling with the breakout rooms. However, we ensured that we had at least three members of our team co-facilitating each workshop, including one person who could provide technical support. The value of having this kind of support should not be underestimated, as it is important to provide a space where all participants can feel they can contribute.  

We also started each workshop with “housekeeping” information by offering instructions on how to navigate MS Teams and any technological difficulties. Feedback from participants confirmed the benefits of these instructions, especially receiving them in advance.

In hindsight, our experiences with MS Teams “breakout rooms”, good and bad, show just how important “tech trial runs” and “housekeeping” are as features supporting effective co-production in organising online, co-production workshops.

You can find our toolkits here. We are always on the lookout for useful resources and information, helping us further build informative and helpful intimacy toolkits, so please do get in touch if you can help (b.jay@mmu.ac.uk). 

SAAIL was funded by the National Institute for Health and Care Research School for Social Care Research (NIHR SSCR). The views expressed are those of the authors and not necessarily those of the NIHR SSCR, NIHR or Department of Health and Social Care.  

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