Make mental health research a positive experience for all

Accessibility and honesty are two key values. Photograph of licensed clinical social worker Rose Stauffer during a client’s therapy session at the post traumatic stress disorder clinic in Bay Pines, Florida – © Dod News Features on Flickr

What more can we do to ensure everyone finds the process constructive and valuable, asks Vicky Peace?

When I saw the main focus for World Mental Health Day 2015 (October 10) was Dignity In Mental Health, it got me thinking.

Specifically I thought about the work I do in this area for Qa. Have I ensured my research participants with mental health problems are treated with dignity? It meant revisiting my research skills and placing them in a wider context.

qa-logo-square-cutout-60This is one of a monthly series of blogs exploring what we have learned from our research into helping improve services for people with mental health problems, children, young people and families, and those in later life

The 2014 National Survey For Attitudes To Mental Illness tells us that attitudes towards mental illness are improving, compared to 2008.

But there is still stigma around mental health issues. This can affect self-esteem, social mobility, employment and dignity.

Many of our participants, particularly over the last few months, are some of the one in four affected by both their illness and the stigma which seemingly come hand in hand.

At a conference I attended in York last week, professionals from many different backgrounds came together to discuss child & adolescent mental health, showing not only the broad range of people connected with people’s mental health in some way; but also the broad range of people that can offer some level of support to children and young people – it really is Everybody’s Business.

‘Be honest’

I want to make sure that taking part in our research is a positive experience for people with mental health issues, so I asked a mental health worker what important considerations she makes when meeting with her service users.

Many of the things she told me were what I would consider when meeting a research participant for the first time, for example:

  • not to use terminology service users don’t understand (people aren’t going to open up and have a conversation if they don’t feel like they have common ground with you)
  • recap to see if they have understood (one to one conversations can be overwhelming, and they might not have caught everything you said; particularly if English isn’t their first language)
  • make sure the environment is safe (somewhere they are familiar with is preferred, at least somewhere informal)
  • use the service user’s own words (these might be what we pick up on during the first minutes of an interview and are important for building a rapport with the participant)

One other thing? “Be honest,” she said. “If you don’t know the answer, tell them that.”

The four stages

This is an excellent starting point. But if researchers are to collect robust, valid data we must consider the needs of participants at all four stages of the process.

1. Approach

Right from the outset we should look to ensure our methods are accessible to people with mental health problems.

Think about the participant before you agree research methods for data collection. How can you make it an enjoyable experience – or even better, an empowering one?

Are focus groups or one-to-one interviews appropriate? Conditions like social anxiety or agoraphobia can affect a person’s ability to attend a group or even leave the house.

Build in flexibility so no one is excluded from taking part.

The next challenge is recruitment. By building a good relationship with the “gatekeepers” – voluntary workers, support workers and so on – we help to build trust with the service users they introduce to us.

2. Tool design

Without the correct tools we won’t get the data we require, we won’t meet our client objectives, we won’t find out surprising things we didn’t set out to discover – and most importantly we could negatively affect the experience for people taking part.

Design the tools with care, through desk research and discussions. The check, test and pilot them until you are sure they are right.

You might still have to change things on the day: one size does not fit all. That was something I discovered when interviewing for a project researching alcohol misuse.

My colleague Becky speaks more about measures and scales in her October blog.

3. Fieldwork

So you’ve been careful to create an accessible approach, and designed the right tools for the job. But you still might have to change things around when you get in the field.

A genuine risk is blinkered surveying – assuming that what has been designed in an office environment with much input will work perfectly with the client group. However, it is the participant on the receiving end who can tell you how appropriate your tools are.

To counteract blinkered surveying, listen to the feedback you are getting. Here your team in the field are crucial.

This means employing experienced and empathetic interviewers who treat all participants with dignity and respect, regardless of any mental health conditions they may have.

Our experience at Qa has taught us the importance of putting the person above the condition. This is all about using “person first language” (Snow, 2008).

Participants are people before they are people with mental health conditions or disabilities.

We recently piloted some surveys with service users. Through to their feedback and researcher observations the survey was significantly refined.

Relying on internal testing alone may not have been enough to bring the issues to light.

4. Endings

Throughout the interviewing process I have two watchwords – openness and transparency.

In practice this means a number of things. Being open with your speech and actions and leaving no room for ambiguity – prefacing questions can help put anxious participants at ease.

Be transparent with your research intentions: tell your interviewees why you want their input, how important they are to the study, and leave them with something to refer to when thinking back about their interview or survey.

Ultimately you hope that participants will feel that getting involved with research can be a positive experience – and that their opinions as a person living with a mental health condition have gone towards an important project.