About the RELAX study and its public involvement

The REduce Levels of AnXiety (RELAX) study is a randomised controlled trial testing a form of ‘brain training’ designed to reduce anxiety in pregnant woman and new mothers, an approach that has already been successful with non-pregnant people.

In the study, participants who are randomised to receive the RELAX training, as well as receiving their usual maternity care, are invited to listen to short scenarios about everyday life and pregnancy. The training is designed to help participants learn to resolve these scenarios positively and imagine themselves in the positive outcome, and by doing so gradually reduce patterns of negative thinking. Participants in the control arm of the study have their usual maternity care.

In the early days of planning the study, Professor Colette Hirsch, clinical psychologist and the study’s chief investigator, talked with community and maternity groups, including the King’s College Hospital maternity voices partnership (MVP) and  Parents and Communities Together (PACT) in Southwark, a community-led social support project to empower parents and improve the health of young children. Colette also approached ARC South London’s maternity and perinatal mental health theme public advisory group, which is led by Mary Newburn. Mary became a co-applicant and the public involvement lead for the study.

Once the study successfully gained funding from the NIHR, the RELAX team held two online engagement workshops and PACT hosted a face-to-face introduction with lunch, aimed at women who had experienced worry or anxiety during pregnancy. Many women talked about how disabling their anxiety in pregnancy had been, and how it made their lives miserable. A diverse public advisory group was created made up of women who had attended one of these events, plus representatives from maternity charities and networks.

The RELAX team aims to involve the public in innovative and responsive ways:

  • Public advisers have been invited to take the ‘brain-training’.
  • An optional WhatsApp group is used for quick, informal communications.
  • We offer online chats after formal advisory group meetings.
  • RELAX researchers encourage public advisers to take public involvement and research training courses, paying reasonable course fees, and for their time.
  • We all promote study recruitment, using Instagram, Facebook and Twitter, plus posters, flyers, business cards and branded mugs, water bottles and pens.
  • We have a study newsletter for community and public supporters (email ‘subscribe to newsletter’ to relax@kcl.ac.uk).
  • Two public advisers, Chrissy Brown and Abi, made films about lived experiences of anxiety and support for the study. These have been used to promote recruitment, including in Maternal Mental Health Week (below).

What difference has public involvement made?

Public advisers have tested the platform used for the study training sessions, commented on the length of the training sessions, the introductory text, the scenarios of everyday situations, the logo and other graphics. In response to feedback, researchers have reduced the length of each online training session from 25 to 20 minutes, shortened text and made language simpler, and kept study colours to soothing shades of blue and green.

I provided feedback on the wording of the scenarios and on marketing materials. Also, spreading the word about the study and distributing fliers in local libraries, talking about the study in a local children centre and schools, and via WhatsApp and Facebook

Lola Alimzhanova

Motivation and experiences of public advisers

We asked the public advisers what motivated them to be involved in the RELAX study. The comment below is typical of feelings many expressed.

As someone who experienced anxiety during pregnancy, I wanted to contribute towards the study so I can make a difference to future pregnant women.

Public adviser

As Michelle Howard explained, the study seemed ‘really positive and trustworthy’, because the researchers are ‘experienced professionals at a reputable London university’ and the focus on ‘low to moderate’ anxiety is important because ‘support services are often limited, or (entirely) neglected, unless anxiety is moderate to severe’. In contrast, another person said:

I was a bit sceptical regarding the method itself because I wasn’t sure how it could reduce anxiety and worry through watching videos and how it could help to reframe thoughts in a positive way since they are so ingrained in our thought process and became part of our identity. … But after learning more about [...] the study, it made lot of sense

Public adviser

Service user contributions – the highs and lows

We asked those contributing, how it felt to be advising the researchers. A large majority of the feedback was positive.

The whole team always made me feel valued … I always felt listened to and respected 

Public adviser

I’ve found the study content fascinating and I’ve really enjoyed being able to input into something that I honestly believe could make a real difference with so many women

Siobhean McCarthy-Perham

Siobhean

It makes me feel like I’m really helping, being active in the involvement, and everyone always welcoming your thoughts and ideas

Abi Snaden

Abi

Receiving posters, cards and the RELAX-branded merchandise (water bottle and pens) made me feel valued; it helped to strengthen my passion for the study. … it brings the study to life

Michelle

Involvement in research can also have a profound impact for women themselves. One said: 

It is a great opportunity to have a voice. … As a stay-at-home mother of three it is extremely hard to be active and participate in non-children-related work.  By providing a crèche at the first event and funds for childcare during the meetings, the RELAX team makes sure our voices are heard

Public adviser

Public contributors have enjoyed learning about research processes, but there have also been some frustrations.

It surprised me how long ethics can take to approve and that it is very specific in what is approved and what is not

Public adviser

Potential negative consequences of involvement

Prompted during the coproduction planning, we asked, ‘Has any aspect of the involvement been triggering, and if so, did you feel supported or know how to get support?’  Several people were reminded of stress and anxieties they had suffered. One who had tested the training said that involvement ‘did bring back some difficult memories, but I also felt empowered to process them in a different way’.  

I have not found the study to be triggering, but if there have been difficult conversations it has felt very supported and in a safe trusted place. I know who to contact for additional support

Public adviser

We also asked about any barriers to involvement and the kind of challenges that people might face. Research, and its jargon, can be especially complex for people whose mother-tongue is not English. One such person said, ‘So far it is okay, my barrier is just sometimes I feel I don’t belong, but the team always welcome me, and is happy to hear my comments.’ 

Another public adviser commented:

The overall barrier to participate in research is lack of time whether you are in a full-time job or a full-time parent. As a result, public involvement is under represented by different ethnic groups, economic backgrounds etc

Public adviser

Nuts and bolts of public involvement

Some earlier work has emphasised the importance of reciprocal benefits for public members, in addition to fair remuneration. Advisers to RELAX value learning more about research and other research involvement opportunities. They also spoke about enjoying intellectually rewarding work while juggling domestic commitments, and gaining personal confidence.  Payment of childcare costs and creche facilities are much appreciated.

Practical details matter:

I was given a very good introduction to the study, all answers to my questions were provided and I have been offered appropriate training opportunities. … I feel service user expenses were very well explained and paid in a timely manner

Public adviser

We have a WhatsApp group and emails are replied to promptly

Public adviser

The communication has been outstanding. We know so much about the progress of the study

Public adviser

Final thoughts

The RELAX study began in February 2022, but could not open to recruitment until June 2023, so the set-up and preparation period has been lengthy. Despite the slow start, which could have been demoralising, public involvement has been a positive experience. It has made a difference to many aspects of the delivery of the study, if not its fundamental design, and has generated ‘community’ recruitment, via social media publicity and distribution of posters and fliers.

As well as benefiting the study, public involvement has been a positive experience for the public advisers who feel valued, well supported and rewarded for their contributions. They feel highly motivated by the subject of the study and the intervention being tested.

Find our more

The RELAX study is funded by NIHR and is supported by the NIHR Maudsley Biomedical Research Centre (BRC) and NIHR ARC South London, and is co-sponsored by King’s College London (KCL) and Guys and St Thomas’ NHS Foundation Trust (GSTT). 

About the authors

  • Mary Newburn, RELAX public involvement lead
  • Brittannia Volkmer, RELAX trial coordinator
  • Abi, RELAX public adviser
  • Simi Bansal, RELAX public partner and a doctor working in obstetrics
  • Siobhean McCarthy-Perham, RELAX public adviser
  • Rachael Leonard, NCT charity representative