It's done!

I've handed in the finished report last Friday. Didn't even have to stay up the night before, which is quite a personal achievement. I attribute it to keeping track of the work on here. Check out the conclusions!

Pictures (c) John Hill.

Interview questions

I spent the morning writing my interview questions. John helped to type it up. Look at the nice format:

       

I chose to use a lot of questions from Brady, Verba and Schlozman's article (the one I discussed here). I want to ask the interviewees about their resources and civic skills in order to identify obstacles to participation, and since the questions by Brady et al. (Herafter BVS) were designed to do exactly that it makes sense to copy them; and this way the results can be cross-compared.

There are two major complications with importing BVS' questions. First of all, I am interviewing people in a mental health service, but a lot of the questions are not entirely relevant to their day-to-day life. For instance the question "Last week, were you working full time for pay, working part time for pay, keeping house, going to school, or something else?" can already be answered to some extent for probably all of the interviewees: they visited the service where I will be talking to them. In order to fix dis disparity I have added a couple more specific questions and slightly changed others - to the question in the example I added the option "visited the service".

The other complication is that this survey was designed for people in the United States, but this is Northern Ireland. The problem is not just that I have to edit the questions so that they apply to the local situation, so for instance "secondary school" instead of "high school". More importantly, because of the political situation in Northern Ireland people may feel scrupulous or hesitant to answer certain questions such as: what language do you speak at home? Are you a UK citizen? What is your religious denomination? I don't want to ask such questions unless strictly necessary. I added a disclaimer to let the interviewee know the research is not about the sectarian division and they do not have to tell me what side they are on.

BVS designed their questions for a large-scale quantitative interview. I am going to interview too few people to meaningfully compare my results, but still their results could serve as a way of placing mine in context. For instance, if a participant turns out to have very little time, we can refer to BVS who found that people with little time generally do not participate as much. The ease of integration of their questions in my interviews shows that a question is not inherently qualitative or quantitative; it depends on the number of research participants and on how the acquired information is processed.

P.S. I updated my consent form so that it is relevant to the actual questions. Here

Suggested search gives an idea of people's image of mental illness.

Research (now with vulnerable adults)

My practical research (as opposed to the literature review) consists of two major parts, one of which I've already completed and the other I haven't made an appoitnment for yet. I'm going to have to hurry as I've a month left to get EVERYTHING done so interviewing, writing, editing, cleaning up the references, getting the whole thing printed and ring-bound somehow.


Research design

Part one is an experiment, to do with the All-Party Group I described in the previous section. For one of the meetings we invited a service user to come along to give a talk about her experiences with the particular piece of legislation that the meeting was about. After her talk I handed out surveys for present MLAs and MLA representatives to fill out, about what they thought of the talk and if they had had contact with service users before, that sort of thing. Beside the surveys the oral comments from those present, my own observation, and importantly the conversations I had with the person who gave the speech were very useful sources of information. Conclusions from the experiment relate to how a service user can be accommodated to give such a talk and how it can have the most impact on the decision-makers it is meant to influence. Here is the questionnaire I used.

Part two of the practical research, the part that I haven't done yet, would be interviews with service users, nurses and officials about their experiences with politics and the obstacles and barriers to their participation. The questions I had for this are actually, in hindsight, pretty bad; I'm basically just asking them what programme they think should be ran. That's alright as a side question but not as a main question I don't think. Having done the research that I've done now I think there should be:

1. Profiling questions about their type of illness and what class they would say they were in; middle, working, upper?
2. Identifying barriers or obstacles to participation
1. A considerable section on civic skills -- maybe I could ask some of Brady, Verba & Schlozman's original questions. This is to test my thesis that this is one of the main obstacles. Includes questions about education, work experience and confidence.
2. Questions about their opinions of MLAs and of Stormont to see if they think politics is really impenetrable, plus a couple of knowledge questions about Politics to see if they need informed about politics, as this is one of the Rethink Politics programme's main pivoting points (besides skill building.)
3. Searching solutions: would they participate in 
1. a programme to help them build civic skills 
2. a committee or board 
3. a user-run service... and which do they think would help (and why?) (and which programme do they think should be ran, if any)

Research ethics

As much as I like this whole blogging thing I won't be able to post any of the evidence or the results on here though. That's part university etiquette and part common decency, succinctly summarised as research ethics. When talking about research ethics, people suffering from mental illness are generally classed as vulnerable adults, along with people with Down's syndrome and learning disabilities. The main ethical priorities when doing research with this "group" are informed consent, privacy and confidentiality. I will now explain what these mean in general and for my research in particular, among other issues.

Informed consent means the participants in the research know what the research is about and what the risks and benefits for them could be. With people with learning disabilities the risk is that the researcher might make them sign a form to say they have read and understood the risks of the research, when in fact they have no idea what's going on. One time as a kid I was playing with marbles with a girl my age who had Down's syndrome. I asked did she want to play "keepsies", i.e. whoever won got to keep the marbles, and she said yes; but then when I won and wanted to keep her marbles, a classmate told me off. His argument was that whatever I'd ask her, she would probably say yes despite not understanding. Here we could say there was no informed consent despite her "signing my form". I don't think this scenario applies to mental health service users as much as it applies to people with Down's syndrome. In fact the whole point of my research is that mental health service users may have lost control over some parts of their lives, but this does not mean that they are unable to make sensible decisions about any part of their life. (What do the experts say?) My consent forms for the interviews: 1, 2

Another problem of informed consent is that in some researches it is crucial that the participant does not know exactly why they are being asked to do something, as it could influence the way that they do it. This is not a problem in my research; for the interviews I will tell the participants in advance what my research is about and why I'm asking certain questions, and for the experiment I went to great lengths to make sure that the speecher didn't mind me handing out questionnaires and I had her read the questionnaires and told her I could edit them if she wanted me to.

My main concern was that she'd feel like she was being judged for the speech - which would be understandable as the questionnaires are basically asking MLAs "what did you think of this speech". I think this demonstrates the tension between getting research results and taking care of your participants. If I'd made her feel too bad about herself to give the speech then I couldn't have gone on with the experiment despite how many positive implications it might have had for mental healthcare in general and for my own academic credentials. This is now drifiting away from informed consent in the direction of psychological harm, which is something that you want to avoid as a researcher. I think psychological harm is a bigger risk when doing research with mentally ill people than lack of informed consent is, as service users may already lack self-esteem. If they are portrayed negatively in the research report or if they get the idea they did something "wrong" e.g. they gave the wrong answer to a knowledge question, this might further undermine their self-esteem.

Mental health service users also have a lot to win or lose when it comes to forced treatment and imprisonment and rights to self-determination. This was also noted by Barnes et al. while they were trying to find user-run groups to participate in their research:

Users of services have objected to being subjected to the professional gaze of the researchers as they are also objecting to being constructed as passive recipients of welfare services. In some instances they have refused to participate in researach projects. ... Considerable discussion was required before one particular group finally agreed to be involved. ... Researchers working in this area have to develop new ways of working with users as participants rather than subjects of the research process. (p.10-13)

Privacy and confidentiality together consist of the considerations: what can I ask, what can I write about and what do I do with the data afterwards? It's a bit like with the NSA. People may not be comfortable with their data being published all over the world, especially if it could still be connected to them in specific, and especially if it concerns incriminating, embarassing or very personal information such as experiences with drug use, memories of having been bullied or how long a person has been out of work for. Data can be anonymised, but the more detailed and specific the research, the more risk there is that participants can be identified by their remarks anyway. If there is one case study or one small group of interviewees, like in my case study, the risk of identification is quite high. Likewise it is higher in a qualitative study where participants are quoted at length than in a quantitative study where they represent a dot in a scatter plot.

To an extent risk of identification via quotes is inevitable especially if the point of the research is to ask people for their specific experiences, but the researcher should use their own good judgment in what information to quote and what to leave out. Specific placenames shouldn't be mentioned and names can be changed or left out of the report. In my particular case, I will be asking people for their work experience, but I'll avoid talking about that in any recognisable way. Once again, Barnes et al. came across a similar problem in their research:

Interviewees in one group had found it uncomfortable to have their words reflected back to them in the case study report. They were concerned that other group members would be able to recognise who had said what, even though individuals had not been identified. (p.14)

After I finish the research I'm going to have to destroy the records and transcripts of the interviews. It's a form of good practice even if there is no realistic risk that someone would find them and hound the interviewee for its contents. Really there shouldn't be anything that I could possibly still need it for and if I would use it in another way than for the reports, that would be something that the interviewees did not give me explicit permission for.


In conclusion, the risk that mental health service users would not be able to actually consent to the research is not very big and there is no deception involved. Real risks to studies in this area are negative portrayal of participants, such as making them seem like passive recipients of mental healthcare; causing psychological damage with unwarranted remarks or interview questions, and putting identifiable details from the interviews in the final reports. For each of these risks there are few absolute solutions other than the researcher being aware of this, using their good judgment and taking advice from others, including the participants themselves.

Administrative Support for an All-Party Group

In order to introduce the section on charity responsibilities I will talk about the charity I did my internship for, and what the internship work consisted of. First I'll explain what an APG is and does, then what the benefits of running one are for MindWise and what my job there consisted of.

What are All-Party Groups?

An All-Party Group is an opportunity for parliamentarians to discuss issues outside of the common room. They can bridge party lines, make alliances, ensure they are better informed of issues for debate and make plans for what action needs to be taken on these issues and network with representatives of organisations working in the field. Topics range widely, from housing development to jazz appreciation. In Westminster there are country groups as well, to discuss international relations between the UK and for instance Brazil or Qatar.

The All-Party Group meets regularly; ambitious groups may decide to meet monthly but bi-monthly or quarterly meetings are also common, as parliamentarians don't have much time. Meetings are often themed to a particular aspect of the group's topic or to a piece of legislation that falls within their field, e.g. the disability rights group may have a meeting about stigma, or one specifically about a new measure against unemployment. During the meetings there will usually be a couple of speakers who are experts on the specific issue, and there will be opportunity for a (panel) discussion.

The All Party Groups are meant as groups for and by parliamentarians. In Northern Ireland, the group has to be chaired by an MLA and only MLAs can be members. However, MLAs hold the right to ask for external support and this is where charities come in. According to the rules for APGs in Stormont:

All-Party Groups can choose to be supported by outside individuals and organisations. At the discretion of each group, outside individuals and organisations may contribute to organising meetings. They may also attend and speak at meetings. They can advise and support All-Party Groups, including through the provision of permanent secretarial support. They can even provide financial support or other material benefits, provided this is properly registered.However, they cannot become members of an All-Party Group and therefore cannot vote at any meeting or on any issue. Nor can they offer any payment, reward or benefit of any kind in the expectation that the Group or any member of the group will advocate or initiate any cause or matter on their behalf. It is acceptable, however, to arrange and pay for visits for members of the group where the purpose of the visit is related to the subject matter of the group. In such circumstances, members would be required to register receipt of such a visit on the Register of Members’ Interests. (p.13)

Advantages of external secretarial support

If a charitable organisation gives administrative support this has benefits for the MLAs as well as for the organisation itself. As stated MLAs have little time and so it may be too much of a burden to run an APG on top of their other duties, but with external secretarial support this is possible. Organisations already have a professional knowledge of the topic and are therefore better able to choose themes and speakers; they have contacts with other organisations in the field and so the meetings will provide better networking opportunities than if they were organised by an MLA (who, after all, have to spread their attention.)

For the organisation in turn it provides a lot of advantages to be the one running the APGs (rather than another organisation in the field). It increases their visibility for decision-makers and other organisations alike, and they do get some influence on promoting their point of view by inviting speakers who agree. For instance, by running the APG on mental health, MindWise's social model of mental illness gets a good podium rather than the more medicalised view that the Royal College of Psychiatrists would have (N.B. there have been speakers from the RCPsych, but MindWise decides on the themes of the meetings and gets to see the outline of the talk before it is given.) That said, in order to maintain credibility as representatives of the whole mental health sector in Northern Ireland, MindWise does need to invite speakers from many different organisations - their allies as well as their competitors.

Running an APG is a considerable amount of work, though. The administrative tasks include:

• booking meeting spaces and catering
• inventorisation of relevant organisations and stakeholders, making address lists, sending invitations, making attendance lists
• coming up with good themes
• identifying and inviting potential speakers, meeting up with them to plan their talk
• gathering typed versions of all talks, presentation outlines and information leaflets, and sending them to all attendants well in advance along with the agenda
• writing minutes during the meeting and sending them to all attendants afterwards
• getting approval for any decisions made from the responsible MLA

Health-related all Party Groups

Interestingly, looking at the list of APGs in Stormont (which is available on the internet, here) 15 of the 35 total groups have something to do with healthcare (I'm including everything from congenital heart disease to learning disability and pro-lifers.) This shows that the groups are a popular method of lobbying in the health sector in Northern Ireland, for whatever reason. John says the biggest employment sector in Northern Ireland is healthcare as well and that might explain it. I tried to count the number of health-related APGs in Westminster but there are a bit too many to count quickly - of the first five letters (A-E) there are 154 groups of which 32 health-related. That is about one-fifth when in Stormont it was almost half of the groups.

Institutional arrangements: How?

In the previous post I found that the process of building participation has two sides: the service user side and the institution side. The user can build their skills and try to be active and involved. The institution or organisation that the users are to participate in needs to change its attitude to users, on the one hand, and take practical measures to allow participation to happen, on the other side. In the previous post I talked about the BMHRG report and their examples of practical measures; in this post I will continue on that lead and talk about two other sources and their examples of practical measures.


Source 1: Tait and Lester get into the theory of involvement

The article by Lynda Tait and Helen Lester (link, scroll on to p2 of the pdf)  is probably the most directly relevant I've found to date - it's called "Encouraging user involvement in mental health services". It gives policy context, a bit of theory, reasons why it's important, reasons why it's hard, good examples and finally recommendations for organisations.

In the theory section they cite a schema devised by Peck et al. in an interesting sounding article that is somehow not findable on the internet (if you look at the content list for that journal pages 440-452 are missing, the article is 441-451) so we'll just have to work with what they say about it. The schema was in turn put together from different models of involvement. One of these focuses on the different roles a service user might have with regard to involvement, ranging from least involved to most involved: they could be the recipient of communication (about decisions that have been made); they could be a subject of consultation e.g. via surveys and councils; and they could be the agent in control, like in a user-run group. Consultation is seen by the authors as better than nothing, but not yet good; it is not seen as meaningful participation as the user does not have decision making power. Interestingly a page later (171) they say the emphasis should be on "partnership, influence or control" for users. Partnership is not in the schema on p 170 and they do not define it clearly so I don't entirely understand what the difference between a place on a committee and "true" partnership is.


Source 2. Cole et al. and indicators of the right attitude

To go on about meaningful participation a bit more; from the sources I have read so far I have got a better understanding of when participation becomes meaningful. Just a place on a board or a committee won't cut it, there need to be extra measures in place to ensure that the service user is listened to, taken seriously, and given actual decision making power. A lot of this is about attitude and the way people treat each other, and as a result some of the recommendations I have found take the form of indicators of the right attitude, rather than of things that are good in and of themselves.

An example of such an indicator is the following recommendation given by Cole et al. that people at the top (managers, planners, policy makers, councillors) should have regular contact with service users. I don't directly see the practical benefits of this recommendation in and of itself - in practice it would take a lot of time to organise when the input of the users may not have direct relevance to what each of the staff persons is working on. However, if you see this as an indicator, it would show that service users have been effectively involved in all levels of decision making.

The book by Cole, McIntosh and Whittaker is called "We want our voices heard" and it reports the findings of a project in York to increase involvement of people with physical and learning disabilities. The findings are fairly transferable to mental health, which ties in to my theory that a big part of increasing involvement is about adhering to general standards of accountability and democracy, rather than trying to work around the mental illness of the service user (which is what stigma would have us believe this was about). It is for a large part due to the general hierarchical structure of healthcare and social organisations that even "normal" people would have difficulty trying to exert influence. Yet for mentally ill people and disabled people it is on the one hand more important to get involved, because the organisations tend to have a bigger impact on their lives (for mentally ill people, mental healthcare service runs their housing and their day activities and social trust decides whether they are still eligible for disability benefits and then gives or withholds those). On the other hand, it is harder to get involved, as because of stigma they tend to be taken less serious than people without a diagnosis, and because of the illness they may feel more inhibited and less confident.


All recommendations in a list

Below some of the recommendations given by Cole et al. taken from the list entitled "In a service with effective user involvement we would see at the strategic level:"

• Users should be in committees and sub-groups with appropriate support; 
• There should also be parallel user-only sub-groups with negotiating power and a clear process for joint working with staff/professional groups.
  (One of the benefits would be that service users may feel less inhibited when talking to other users; furthermore they can talk in more detail about what changes are desirable from the user point of view. It's a bit like a parliamentary special interest committee in that sense.)
• The budget for user involvement is seen as essential and non-negotiable; a part of mainstream funding and not just an 'add-on' offered when there is some spare money.
  (I think this one is more tied to physical/learning disability than to mental health, but it raises the question what the costs of involvement could be. I think for mental health the obvious costs are for advocacy services and support of an advisor or carer; also for covering travel expenses as suggested by the BMHRG. Tait & Lester say that a service should create paid posts for service users.)
• Users should be involved in monitoring and evaluation on an on-going basis
  (Perhaps this is the opportunity for the paid posts suggested above)
• User involvement should be written into contracts.

Tait and Lester write that meaningful user involvement is not a one-off project, but it should be deeply integrated in every level of planning in a service. That's all well and good, but where do you start? They give a couple of examples of positive practice:

•  User-led research projects. In the decision-making process, research projects are an important stage as they influence the agenda: what are priorities for changes and improvements? When given a chance to do their own research, users ask different questions and may get different answers from the other users when interviewing. In one of my next posts I will write about research ethics; increasingly, users are objecting to simply being the subject of the professional gaze.
• User involvement in staff selection and training. I came across this idea before in the research for the post on user groups. This idea works on multiple levels; it gives the person who is applying or training for a job a better idea of who they will be working with, and what the job will be like. For the user it is a chance to exert influence on an important aspect of their own life, certainly if the staff is someone they would be in contact with every day. That said, even for a higher managerial staff position, it would improve contact and communication between the top and bottom levels of the organisation if users were involved in the selection. 
• Inclusion in the workforce. Given that users are experts on their own illness (they have lived it so they know what it's like living with it) it is not too far of a stretch to say that they should get paid positions supporting other people who are going through the same. Furthermore they could get paid positions in education and training of staff (see point made above) and in planning and administration. (This short article is specifically about the success of peer support worker programmes)

Coming up next

The "two sides" idea that I propagated in the introduction to this post - participation can be worked on from the user's side and from the organisation's side - leaves out the role charities and services can have in encouraging and enabling increased participation. In the next post I'll talk about what position they could and should take. I also want to reflect on what is more conventionally seen as political participation, as I have been talking mostly about advocacy groups and healthcare organisations so far (though which good reason. Which one? Stay tuned.)

The BMHRG suggests some very practical measures

(Note: I added a new page to the blog to explain the project I am writing these posts for)

I read the May 2012 report by the Belfast Mental Health Rights Group (BMHRG). They consist of service users and their carers and of families who have been bereaved through suicide, and they have ran a campaign for the past few years to try and improve first line care for mentally ill people in the Accident and Emergency room (A&E), specifically by lowering the time that people have to wait (4 hours just isn't acceptable if you are in a crisis) and by ensuring that people get a written notice of a follow-up appointment. In the report they explain how they have tried to monitor the progress on this campaign and in why they found it hard to. I wonder if A&E is really the best place for first line help as they are kind of notorious for making people wait for ages but to be fair the alternatives aren't as known or as accessible.

First of all I was very excited to read the following in their report as it confirms that my work so far has been on the right track:

Dr Helen Potts is a renowned expert in this area and she has previously
assisted the Belfast Mental Health Rights Group’s campaign for meaningful
and effective participation, her work and ours shows that participation requires
two things:
1.      Arrangements put in place to ensure participation at different stages
2.      Capacity building to ensure people have the ability to meaningfully and
effectively participate

We have been talking, on here, about capacity building; that's civic skill right there. However the arrangements at different levels are something that I still need to understand better; I think what it comes down to is that both the service user and the institution that needs to be influenced need to change things in order for participation to happen. The service user, with support from services (user-run or not) builds his capacity and in turn the institutions need to change their attitude to see the value and importance of involving users and carers and they need to put certain measures and agreements in place to make sure participation is meaningful, i.e. it is not just tokenism but users and carers have feasible influence and decision making power.

BMHRG go on to explain which practical measures they asked the Health and Local Care Board to take in order to allow the group to monitor progress and to know what was going on in the meeting. It is surprising how common sense some of these measures are, it seems like they are just requesting that common meeting etiquette is actually lived up to. This is their checklist (p.23/24 of the report):

Before the meeting:

• We had the date, time, location and agenda two weeks in advance.
• We had the opportunity to place items on the agenda and have them considered in a timely manner.

During the meeting:

• The language used was jargon free.
• Any information which was presented was in writing so we can discuss it with the rest of the group.

In general:

• Any disagreements were resolved at the meeting effectively.
• Our expenses were covered.

The list shows the challenges for any group of volunteers to participate: people have jobs/activities of their own so they need to be able to plan the meetings in advance and agree who attends them; they need to be able to discuss the meeting outcomes together and so they need to have the agenda and all the information from the meeting. The covered expenses makes sense if you know that a lot of service users rely on disability/jobseeker's benefits, but it also highlights that their participation should be valued by the Board. The Baoards's goal, after all, is or should be to offer a good standard of care; a goal which they cannot reach without input from those on the receiving end of the care.

The group sent the Board evidence that in over a year, these standards had not at all been lived up to. The Board have since given a staff member the task to ensure that they will in the future be lived up to; they have further said that they will use the lessons learned here in their wider participation projects, and that they would like to set up meetings so that this can be done. (p. 26)


Conclusions:

• The responsibility for making participation happen is on the side of the institutions as much as it is on the side of the service users
• Some of the measures that the institutions can take to ease participation are very practical in nature 

As for the attitude change; Liz Sayce and Barnes et al. (see previous post) all hinted that a lot of attitude change can be achieved by "just doing"; if a person who is open about their diagnosis finds a job, eventually people will realise that they can function normally and that they are not a constant threat (Sayce). For user groups the same goes: if a group calmly asserts themself and shows that they are well-organised and reliable, institutions will eventually come to accept this. In the case of the group studied by Barnes et al., the attitude change had been so far-reaching that by now, officials in the field feel it would be unacceptable for them to make a decision about local mental health planning without consulting the group first.