The article shown below was first published in International Journal of Market Research Vol. 53 Issue 6 (p737-748 copyright WARC) and is available through subscribing to the journal or website www.ijmr.com
Welcoming people with mental health problems into mainstream market research
As an agency-trained researcher, the two years I spent as Head of Research at a mental health charity opened my eyes to the fact that mental health problems are ‘invisible’ and widespread, and that people with mental health problems regularly face exclusion.
During this time I conducted many research projects amongst people with mental health problems, usually about mental health related issues and services, through which I responded to feedback and constantly amended my approach to ensure that I was providing a high quality and inclusive research environment.
My attention was also drawn to the fact that many people with mental health problems are also consumers of mainstream products and services, and therefore form a notable proportion of the population of participants involved with mainstream research projects.
In this article I will discuss ‘best practice’ ways in which mental health problems should be considered when conducting mainstream qualitative research projects and focus groups in particular.
The incidence of mental health problems
There are many different kinds of mental health problems which people experience to varying degrees. These include anxiety, dementia, depression, bipolar disorder, obsessive compulsive disorder, schizophrenia, self-harm and stress.
According to the Mental Health Foundation (2011): 1 in 4 people will experience some kind of mental health problem in the course of a year; mixed anxiety and depression is the most common mental disorder in Britain; and the UK has one of the highest rates of self-harm in Europe, at 400 per 100,000 population.
Many people with a mental health problem do not think of themselves as 'disabled', however if a mental health problem has a substantial, adverse and long-term effect on a person’s ability to carry out normal day-to-day activities then it is likely to be covered by the Disability Discrimination Act. Whether technically a disability or not, the experience of having a mental health problem can be a barrier to an individual participating in society and doing the things they would like to do.
Crucially, mental health problems are widespread, ‘invisible’ and are often overlooked by people who are considering issues of access and involvement all spheres of life.
People with mental health problems as research participants
The importance of researching the medical and social impacts of having a mental health problem is well recognised in the UK and over the years numerous bodies have worked to ensure that users of mental health services are actively involved in research that relates to mental health problems. These include: the Mental Health Research Network; the Mental Health and Employment Research Network; the Highland User Group; the Inclusion Research Network; the Social Care Research Forum and the Social Perspectives Network Research Group.
The learning from the work of psychiatrists, advocates and service user groups shows that participating in research can be a positive experience for people with mental health problems.
A study of mental health professionals found that people with mental health problems benefit from making a contribution to knowledge, and the learning experience involved with participating in research (Pek, 2008) and Minogue (2005) describes the way that research participation can improve wellbeing, confidence and self-esteem. Woodall (2010) found that people with mental health problems participated in research because of curiosity and a desire to help others, but that they might choose not to participate if they felt that the process could harm their health or if the timing and communication were poor. Occasionally participants with mental health problems become distressed when participating in research, and according to Jorm (2007) this is usually when reference is made to traumatic experiences. Jorm (2007) suggests that this must be taken account of at the point of research design. This is reiterated by Taylor (2010) in a study of people with schizophrenia who found that participation in research was generally positive, but that research participants could become distressed through “disclosure and discussion of their mental health difficulties”.
Although this evidence forms a helpful context, a distinct lack of discussion exists around the issue of people with mental health problems participating in mainstream research projects or research projects that do not relate to mental health.
Why is this relevant to a market researcher?
Some people experiencing mental health problems will be isolated from society, or will not have the confidence or inclination to interact with a group of strangers. These people may be consumers of a product or service, but are unlikely to become involved with consultations. On some occasions isolated groups such as these or other people with mental health problems will be the population for your research, but on most occasions this will not be the case.
As a market researcher, it is likely that you will regularly see research participants with mental health problems and will never know about it, as many people with mental health problems are able to manage their conditions and participate in society as they wish to. People with mental health problems are consumers of products and services. Many of them (for example) buy toothpaste and go on holiday and watch adverts and are therefore in a position to contribute to marketing strategy the same as everyone else. Many of them also take part in market research.
In November 2009 I asked a representative sample of 1,016 Scottish adults (via the TNS Scottish omnibus) whether they had ever personally experienced a mental health problem. Around one in six (16%) said that they had. While it was important to my study to distinguish the experience of people with experience of mental health problems from people without, this was not the case for the other omnibus clients. I have no idea what the other omnibus sections were about, but I do know that 166 people with personal experience of mental health problems contributed to research in these areas via the omnibus survey. The other clients never knew that their population contained a sizable proportion of respondents with mental health problems as their mental health problems were irrelevant to the subject matter in question. This indicates that people with mental health problems are contributing to mainstream market research.
With the statistics as they are, you will probably have someone with current or previous experience of mental health problems in any focus group you run. In many cases, again, you will never know that you have participants with mental health problems in your group. However the combination of setting, subject matter and group dynamic leave each group open to the unplanned, and the issue of mental health may well arise when you least expect it.
As a researcher, it is important to consider mental health problems as standard when designing and conducting your research so that you can remove barriers to participation, protect participants with mental health problems from harm, and prepare yourself for dealing with mental health-related situations. This isn’t about treating people ‘differently’, but it is about recognising that some people have more complex needs than others. In fact, applying an enhanced awareness of mental health issues to your practice is likely to benefit the wellbeing of all of your participants.
Preparing for disclosure of mental health problems
In the majority of circumstances the positive identification of ‘participants with mental health problems’ will be irrelevant, and therefore it will rarely be necessary to ask for details about a participant’s mental health during a focus group session. However, there are circumstances where the disclosure of mental health problems might arise, or where people with mental health problems could be negatively affected by participation in the discussion.
Even where your subject matter is completely mainstream, a moderator or other group members may unwittingly bring up topics which are ‘triggering’ for some people with mental health problems. A trigger is a reminder of a traumatic event, and as these will vary from person to person they can be subtle and difficult to anticipate. For example:
Reminders of a traumatic incident (e.g. bereavement, childbirth, abuse, accidents)
Imagery relating to self-harm (e.g. cutting, knives, pulling hair out) or suicide (e.g. jumping from a building, a noose, a gun, taking pills)
Celebrity role models (e.g. unusual behaviour, suicide attempts, diagnosis of mental health problems)
The individual may be able to cope with or ignore the trigger.
The individual may feel uncomfortable and choose not to participate in the discussion.
The individual may choose to bring up their experience of mental health problems to add to the discussion.
The individual may become distressed.
It is possible that the presence of such distressing topics or imagery could occur in any focus group that you run, and that one of your participants could be negatively affected by it. This could have a variety of effects:
If you are aware that the subject matter of a session could be distressing, or if you know or suspect that some of your participants have mental health problems, it is helpful to have two moderators present in case a participant needs support. This allows one moderator to step out of the room with a participant if they are upset, need some time out, or choose to leave the session. Moderators should be carefully briefed and debriefed on dealing with these situations.
Whether solicited or not, it is therefore possible that disclosures about personal experience of mental health problems could occur during any focus group and a moderator should be prepared for this. This is a case of acknowledging that these situations might occur and anticipating how they could be dealt with.
In practice a moderator will need to react sensitively, and use their judgement. To protect the individual who has disclosed the information it is important that any disclosures are taken seriously and treated with respect. Acknowledge the disclosure and thank the participant for sharing their experience.
Example: While discussing the use of parks and open spaces, a participant brought up the way that they interacted with public spaces differently when they experienced post-natal depression. We judged that the participant was comfortable with their disclosure and we thanked them for their helpful insights.
If a particularly recent or traumatic experience is shared, or if a participant has a strong emotional response, a moderator might wish to ask the participant if they would like to take a little time out from the session. Alternatively, it may be appropriate to speak to the participant privately after the session and determine whether they are leaving the session with a positive state of wellbeing or whether they need additional support. It is unlikely to be the place of the moderator to provide this, but the participant could be advised to contact the Samaritans or a medical professional to discuss their issues.
Example: When speaking about issues of consent, a participant became agitated and asked a lot of questions. We asked the participant if they would like to speak to us about something privately, and they asked if they could speak to us after the session had ended. The issues of consent had triggered feelings about abuse that they had suffered, and we were able to explain in more detail how consent related to market research and direct them to sources of support.
It is also the role of the moderator to ensure that following disclosures, all other members of the group feel comfortable to move on with the discussion. In a representative survey of Scottish adults, 15% agreed that “I would find it hard to talk to someone with mental health problems” which indicates that a disclosure of mental health problems could have significant consequences for the group dynamic.
Example: One participant left the session because she was upset by the tactless way that another reacted to her disclosed experience of mental health problems. We had two members of staff present at the group. One left the room with the participant, offered her empathy and support, and asked her whether she would be comfortable to re-join the session. The other member of staff spoke to the group about valuing difference and respecting the experiences of others and the offending party admitted that they had not thought through the consequences of what they had said. The participant returned to the group and the session continued as planned.
In the same survey of Scottish adults, 19% agreed that “People with mental health problems are often dangerous” and 25% agreed that “The public should be better protected from people with mental health problems”. It is highly unlikely that being in the presence of a participant with mental health problems would be unsafe for other participants. However rightly or wrongly, these statistics indicate that participants may feel uncomfortable and unsafe if they find out that other focus group participants have mental health problems. Any disclosure will therefore need to be sensitively managed to maintain the quality of the session and the wellbeing of all group participants. By taking the disclosure seriously and treating it as a helpful insight a positive tone will be set, but it may also be necessary to move about the discussion guide and introduce or remove planned sections in order to sensitively deal with the situation and restore the group dynamic.
Example: A participant started to cry and spoke to the group about their experience of depression. We led by example, thanking the participant for sharing their experience and allowing her time to say what she wanted to say. We revised the order of the session so that we did not go directly from the disclosure into a particularly light hearted activity as we judged that this would not be an appropriate way to recover the mood of the group.
Moderators can find dealing with situations such as these harrowing, stressful and emotionally draining, and it is important that they are also offered appropriate support including briefings on potential scenarios and debriefings after an incident has occurred.
Example: A participant became agitated and verbally aggressive towards the end of a focus group session, as they felt that speaking about a mainstream (non mental health) topic was a waste of their time. The moderator dealt with the situation calmly, allowing the participant a few minutes to have their say on matters important to them, and the group dynamic was restored. A trainee researcher was present and found the situation intimidating. The moderator debriefed the junior member of staff describing how experience helped when dealing with situations such as this, and using it as a teaching point to explore different ways in which the situation could have been handled. This restored the junior researcher’s confidence in their future ability to deal with such situations.
Removing practical barriers to minimise the potential for distress
If you are a qualitative researcher you are probably patient and considerate, and you probably treat all participants as individuals and flexibly meet their needs. For the most part this will be more than adequate when working with participants with mental health problems and those who have made the decision to participate in your research will be well served by this approach.
However, feedback that I have been given when conducting focus groups with people with mental health problems highlights that there are several points in the research process that can make some participants feel particularly anxious. Through general awareness raising and making small changes, many of these can easily be removed to minimise the potential for distress.
Some people with mental health problems will feel nervous or uncomfortable in places they have not been to before, however, much of this will be naturally addressed by ensuring that practical barriers to attendance (i.e. physical access, proximity to public transport, venue facilities) are considered when selecting a venue along with ensuring that the venue you select has an entrance that is well lit and is unlikely to be crowded or intimidating. Failing to address any of these points may lead to a participant with mental health problems feeling anxious about attendance and choosing not to participate, cancelling, or simply not turning up. Providing detailed information about these issues in advance is likely to reduce any anxiety that a participant with mental health problems might be feeling, and allow them to prepare themselves for attendance.
It is likely that the room you book for a session will not be directly accessed from the front door of the building. Finding the room can be an intimidating experience, and some people may be tempted to turn away at this point. Again practical barriers can be addressed via clear signage or greeting participants at the main entrance.
Example: We knew that the room we had booked for a focus group had many good qualities, however it was on the 4th floor and participants needed to buzz in. We therefore provided an information sheet about the building in advance, and took along an extra colleague to greet participants at the door and buzz them in. The colleague asked the participants whether they would prefer to take the lift or stairs (acknowledging but not drawing attention to the fact that some people may be claustrophobic) and directed them accordingly via a series of very clear signs.
I have also received feedback that some participants feel conspicuous or embarrassed when helping themselves to refreshments or using the facilities, and this makes them feel anxious. This can be reduced by explaining and reiterating that it is acceptable for participants to help themselves throughout the session. Similarly, describe the location of key facilities, and explain and reiterate that it is acceptable to take a break throughout the session as required.
Many focus groups conducted about mainstream topics commence with a minimal explanation of what topics the session will cover and what format the consultation will take. I have found that in some cases managing expectations by providing more detail than usual is required to reduce anxiety about the unknown and to put respondents with mental health problems at ease.
Usually a moderator would expect a roughly equal level of contribution from all respondents, but there may be some circumstances in which a person with mental health problems may be uncomfortable contributing. As usual the moderator will need to judge the extent to which a talkative individual is reigned in, and a quiet individual is encouraged to speak while considering that singling out an individual with mental health problems can have a much greater effect on the individual and on the group dynamic than it would in other circumstances.
Example: It was clear from the start of the group that we had a participant who was particularly talkative, and as the group progressed their responses became more and more tangential. We suspected (correctly) that they were experiencing a manic episode. We treated the individual sensitively ensuring that they felt that their input was valued, while re-emphasising questions and deflecting attention back to others in a firm but reasonable manner. After the session we made sure that we spoke to the participant to ensure that they were happy with how the session had gone.
Just as a moderator would not use racially abusive language in a session, or allow participants to do the same, it is important to consider the use of inclusive and non-stigmatising language relating to mental health problems. If you listen out for it, you may be surprised to note how often people use derogatory and stigmatising terminology about mental health problems. While members of the public would be aware that directly insulting a person with mental health problems was inappropriate, they may not notice that they are routinely using phrases such as “the shop was so busy it was mental” or “I was so mad with him I made a complaint” or “the advert was confusing, it was just crazy”. Moderators should keep an eye on their own use of language and that of their participants, as it would be tactless and inappropriate to use language that is stigmatising towards people with mental health problems – whether you know people with mental health problems are present or not. Additionally if the issue of mental health does arise, a moderator should be wary of discussions that associate mental health with negative stereotypes such as ‘suffering’ or ‘violence’ – it is perfectly possible for mental health problems to go alongside a good quality of life and it would be tactless to suggest otherwise. If participants use inappropriate language or references in passing, a moderator could look out for signs that other participants are uncomfortable and move away from the subject or request the use of inclusive language as appropriate.
Other practical issues to consider
Some people with mental health problems have carers who assist them in their day-to-day lives. Focus group participants may therefore need to have a carer to assist them in traveling to or participating in a focus group. It would be a good idea to ask about this as standard at the recruitment stage, and make practical arrangements accordingly. For example, if carers are expected a moderator will need to consider whether the carer will be invited to participate in the focus group, whether the carer will be paid an incentive, and whether the room will be big enough for additional attenders.
Example: At the recruitment stage we asked potential participants whether they had any particular access requirements and through this we found out that one of the participants would need to bring a carer along. We considered the individual circumstances, and found that the carer regularly attended the community group (which was the subject of discussion) with the participant and therefore could provide insight into the session. We allocated a space at the focus group to both the carer and the participant and we notified them in advance that they could both participate. On the day we left it to the carer and the participant to disclose the nature of their relationship if they felt comfortable to do so.
It is also important to consider the level of incentive payment offered. Many people with mental health problems receive benefits and therefore it is important that advance information is provided to ensure that participants do not unknowingly breach their benefit conditions. Be aware that for some people, ‘earnings’ of £20 a week will lead to a reduction in their benefits. The level of incentive offered should be a reasonable fee for participation, and should ensure that participants’ costs are covered.
Example: We knew through the demographic requirements of the project that we could expect some participants with mental health problems who were in receipt of benefits. All participants were offered an incentive of £15 and expenses were also covered in cash upon production of a receipt.
Mental health problems are widespread, but as an ‘invisible disability’ they are rarely considered in relation to accessibility. For this reason, people with mental health problems are frequently excluded from participation in society.
Many people enjoy sharing their views, and people with mental health problems should not be exempt from this. Participation can be an empowering experience, and involvement in consultation makes people feel valued and enhances wellbeing, which can only be a good thing. There is no reason why people with mental health problems should be excluded from participation in market research and in many cases they are participating already.
As researchers we need to do what we can to make research participation a comfortable experience for participants with mental health problems and the other group members. We also need to ensure that moderators are alerted to the potential issues involved around mental health and have access to training and support in this area.
With careful planning, researchers can remove some of the barriers to participation for people with mental health problems, and thus encourage participation in mainstream research from a wider range of people in a safe and supportive environment.
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Highland User group: www.hug.uk.net
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Social Perspectives Network Research Group: www.spn.org.uk