To kick-off our series on language in mental health, we thought it would be useful to compile a list of all the major terms used to describe people who use mental health services. This list is based off of a survey of the prominent academic and popular literature on the subject. If you see any terms missing, please get in touch with us and we'll be sure to add them. We welcome all comments and perspectives on this topic.
We know that language is powerful, and that when we speak about important issues, the weight of words has the potential to both empower and dispossess. We also know that this is not a simple or unambiguous topic, but is one that is deeply contested, and rightly so. The terms used to describe us can become our identity, and so the words we choose is something that deserves careful consideration.
The challenge of choosing meaningful language becomes especially pronounced when engaging those who seek care for their mental health. To date, there are several terms available to describe this population with varying rationales. In the UK, phrases like ‘clients,’ ‘patients,’ ‘service users,’ ‘patients/clients,’ ‘clients/patients,’ ‘people affected by mental illness,’ and ‘user/survivor’ are popular. In the US the terms ‘customer,’ and ‘survivor’ have gained currency, and in Australia ‘consumer’ appears to have become the preferred usage.[i] In our work at the Hatching Ideas Hub, ‘person with lived experience’ has become a regularly used phrase, with both ‘content expert’ and ‘expert by experience’ recently appearing as contenders. While all of these labels refer to someone receiving support, they differ in terms of where they locate power. For instance, the terminology “person with lived experience” aims to be person-centered and strengths based, whereas the term “patient” acknowledges a power dynamic as being under the care of another.
At the Hatching Ideas Lab, our inclination is to draw on inclusive language, but we also recognize that not everyone identifies with the terminology we select. We recognize that for some individuals, these terms seem ideological because they appear to mask existing power dynamics. In research, this raises the question to what extent inclusive language can be used without obscuring existing structures of power? And more significantly, whether or not it is disingenuous to use such terminology, if the structures behind them are not nearly so accommodating?
While it can be difficult to answer the above questions, we think there are some questions that can be posed to help researchers consider the language they use when working with individuals who have historically or are presently receiving support:
· Who have I talked to from this population and what terminology do they prefer?
· What power structures are currently at work?
· In my engagement with this population, who holds the power? In what ways?
· What advocacy groups exist that I can touch base with?
As part of a series of blog posts on the topic of language use in mental health research, we will be continuing to ask these and other questions over the next few weeks. These discussions will not only address the challenge of describing service users, but also extend to our current areas of interest, and provide critiques of phrases such as “committing suicide” and “intentional self-harm.”
To open the discussion, we encourage readers to join by commenting on their preferred terminology, and explain why that term is meaningful for them.
Follow this space and our Twitter page for updates. More coming soon!
[i] Dickens, Geoff and Marco Picchioni. (2011). A Systematic Review of the Terms Used to Refer to People Who Use Mental Health Services: User Perspectives. International Journal of Social Psychiatry, 58(2), 115-122.
Some excitement over here at the Hatching Hub this week, as we prepare for a live Twitter chat being hosted by The Mental Elf (https://www.nationalelfservice.net/mental-health/) and We Mental Health Nurses (@WeMHNurses) on November 28th at 3:00pm (Eastern Standard Time)/ 8:00pm (Greenwich Mean Time). We’ll be discussing one of our lab’s most recent publication, A qualitative study of a blended therapy using problem solving therapy with a customised smartphone app in men who present to hospital with intentional self-harm, which was released earlier this month in the BMJ’s Evidence-Based Mental Health (EBMH) journal as part of a special issue on new technologies and digital innovation in mental health. We were privileged to receive the “editor’s choice” for this article, which means it can be freely accessed at this address: http://ebmh.bmj.com/content/20/4/118.
The chat is being run collaboratively with The Mental Elf team (@Mental_Elf), an evidence-based mental health review, and We Mental Health Nurses (https://twitter.com/WeMHNurses), who have an established series of chats aimed at health professionals in the United Kingdom. You can find their chat archive here: http://www.wecommunities.org/tweet-chats/chat-archive.
The Mental Elf will also be publishing a blog post on our paper, authored by Olivia Kirtley (https://www.nationalelfservice.net/author/olivia-kirtley/), to be posted the day of the live chat. The Hatching Hub’s primary investigator, Dr. Simon Hatcher, and two of the article’s other authors, Craig MacKie and Sarah MacLean, will be answering questions using the @HatchingHub Twitter handle (Dr. Hatcher), @Smacl007 (Sarah MacLean) and @CraigMacKie12 (Craig MacKie). To participate, logon to Twitter at the appropriate time (3:00 pm EST/8:00 pm GMT) and post questions or comments using the #WeMHNs hashtag for the duration of the chat.
This event will be occurring the week before Digital Mental Health Week (#DigiMHweek), a week of research blogs, live streamed expert webinars, tweet chats and podcasts being organized by the Mental Elf’s André Tomlin (https://www.nationalelfservice.net/author/andre-tomlin/) with the support of Lisa Marzano (@lisa_marzano) of the EBMH Journal and the National Institute of Health Research (NIHR) Mindtech team (@NIHR_MindTech). The NIHR Mindtech group will be hosting their annual digital mental health symposium toward the end of the week’s events in London on the 7th of December (http://www.mindtech.org.uk/mindtech-annual-conference/149-nihr-mindtech-htc-mental-health-symposium-2017.html).
Please join us for what promises to be a very interesting discussion, and check out the National Elf Service website (https://www.nationalelfservice.net/) to see some of their fantastic work.
See you on the 28th!
Travel Bursaries and REFLECT 2018:
As mentioned in our previous post, this week’s blog entry concerns a comment made by Twitter user @unsuicide, who sent us the following message on the 14th of August regarding travel bursaries for REFLECT 2017, “Would like attempt survivors from FNIM[i]/remote areas to attend with registration/transport bursary. Travel’s prohibitive in Canada.” A message that was well-received.
In concert with this, I would also like to review something that troubled me about REFLECT 2017, described below, and advance some of the solutions our team has been considering in response.
I should preface this by saying that there was a great deal I liked about REFLECT 2017. I am proud of the work of my colleagues who presented at and organized this event, and I think that the principles of patient-oriented research are vital and necessary, particularly in the case of suicide prevention research. We are all learners in our pursuits, and in many ways, I believe that the REFLECT forum was a great success. However, there was one major way in which I think this event failed; a failure that is directly linked to the concern expressed by @unsuicide above. REFLECT 2017 did not include a single presenter from any of the remote, northern communities most impacted by suicide in Canada.
Not that the topic was not addressed. In fact there were 3 different, excellent presentations on suicide in northern, aboriginal, Inuit and Innu communities; communities who face suicide rates up to 11 times higher than those of the national average. And yet, none of these talks were presented by representatives who actually live in these places. Given that the stated aim of this conference was the inclusion of patient experience into research, this omission, to my mind, constituted a glaring contradiction between the practice and the objective of the event. I was also not the only one who felt this way. We received feedback from attendees who expressed their disappointment at the level of engagement with northern communities.
While I would very much like to explain the specific difficulties that gave rise to this exclusion, at the same time, I am not interested in excusing or redeeming these choices. This is a report of a failure, and I feel that the best way to address this failure is not to elaborate its causes and to outline potential solutions. This said, I think it is worthwhile to underline the point made by @unsuicide: travel is prohibitive in Canada, especially so when it comes to remote communities.
As an example, a return flight from Iqaluit to Ottawa costs somewhere between $1,455.00 and $2,870.00, a figure that does not account for any additional float-plane, bus or fuel costs that would be incurred if a representative did not live in the population centre. Even if the entire budget of a typical conference was spent on providing travel bursaries for people from these areas (which would make it impossible to rent space, provide food, etc.), the number of individuals who could be accommodated would sit somewhere between 15 and 30. If we account for typical conference expenses, this number would likely drop to somewhere between 2 and 5.
These financial barriers make the provision of travel bursaries prohibitive. A presenter or two from these communities might be accommodated (and I am committed to seeing this happen), but the inclusion of patients and care-givers in a substantive sense, one that adequately represents the needs of the numerous, distinct northern communities, is daunting to say the least.
Whose Turf? Engaging Respectfully:
In thinking about how to address this problem, I was influenced by the position of one of REFLECT’s presenters, Julie Kathleen Campbell, who described her clinical work in Nunavik. One of her key messages was this: if you want to work with a community significantly different than your own, you have to meet that community on its own terms. In her own words, “their playground, not your playground.”
With this in mind, the disadvantage of bringing one (tokenism), two (not enough), three (getting there?), or more delegates from indigenous or northern communities is that it is still operates on “our” (southern/settler/academic) terms, in “our playground,” within the delicate confines and double-speak of the contemporary academic research conference.
The point made by @unsuicide remains crucial. Funds should be made available for people with lived experiences and patients who want to attend a patient-oriented conference. And yet, I also find myself wondering: does the transport of people from remote communities to “our turf” constitute an adequate form of patient engagement?
With a thousand Audio-Visual horror scenarios suddenly flashing through my mind, I’m going to suggest that for next year, we try to use the Internet a bit more. Panels and presentations on indigenous suicide would benefit not only from indigenous speakers, but also from online access by interested community members. While communications infrastructure and the state-of-the-art in webcasting still presents us with a plethora of problems, careful deployment of fail-safes (e.g. having back-ups available that make use of conventional telephone, e-mail, and/or text; rigorous pre-conference network testing; having site-specific, local plans in place for when technology fails) and a clear assessment of the telecommunications resources available in particular regions (availability and reliability of high-speed internet connections, maximum bandwidth, level of dependence on satellite, etc.) would go a long way to establishing and maintaining communications, and would assist in identifying the most appropriate applications and technologies to be used in this endeavor. Newer web-based applications such as sli.do[ii] and VoxVote[iii] may also allow for participants engaging remotely to weigh in on which questions they consider the most important, and interact with conference participants at the host site.
What Can Be Done?
What would this process look like in practical terms? Well, the first step would be to identify which areas have reliable broadband access, either on an individual house-hold basis or within some central gathering space (i.e. a community centre or a hospital). There is some reason to be optimistic on this front. In 2014, and again in 2016, the Federal government initiated a plan to provide stable broadband access to Northern and remote communities. They have been tracking their progress here: http://www.aadnc-aandc.gc.ca/eng/1352214337612/1353504776242. According to the information they’ve provided, a number of areas can now claim a significant level of access to web-services. However, with a standard of 1.5 Mbps compared to the 30 Mbps accessible by most city-dwellers, these services exclude access to streaming of high-quality video content on platforms such as Youtube.[iv]
For those communities that have reliable access at home, the process would be similar to any other webcast or live-tweeting of an event. Targeted promotion of the event several months in advance should provide interested individuals with an opportunity to follow the proceeding from their computer, and would similarly facilitate the broadcast of presentations from these locates. Audience questions could also be registered through an application like sli.do or VoxVote, enabling remote participants to weigh in and address presenters at the host sites. Features such as the ability to “like” particular questions from a list generated by the audience would also ensure that the inquiries most pertinent to the group at-large would receive appropriate coverage and attention.
For those communities whose telecommunications infrastructure is more limited, special arrangements would need to be made. In these instances, the closest central location boasting reliable Internet access would have to be identified, along with a local representative who would be willing to help make arrangements for a community forum. These organizers should be compensated for their time, and funds should be made available to assist interested community members wanting to travel to this forum. In these cases, there should be two meeting agendas developed, one that assumes a stable or unproblematic connection with the host-site, and another that assumes a limited or failed connectivity. In those cases where the web link to the host site fails, this would allow the group gathered to hold their own discussions, identify priorities and problems that are important to them, and contribute these insights as soon as a connection is re-established. Having this sort of back-up agenda, along with a process of integrating and discussing these insights as soon as they become available, is crucial in order to ensure that the satellite sites are never made to wait idly while connection with the host-site is re-established.
What Has Been Forgotten?
This is an imperfect schematic of what could eventually become a workable plan, but there are numerous other considerations that must also be accounted for. Audio linkages must be clean and clear (having an internet-connected microphone available so that the presentations are heard on both sides), making translators available where needed and compensating them, having access to technicians for trouble-shooting during the event, and staggering the event over time so that challenges can be addressed and sites re-connected. There are also a host of other things left unconsidered here, and additional failures are inevitable, but I have more than a little faith in the democratizing potential of the Internet, even while it proves an occasional or frequent disappointment.
I encourage anyone with expertise in this area, specifically telecommunications in remote regions and the Canadian North, to reach out to me. In particular, we need to better information on the practical realities of telecommunications in Canada’s remote communities. Which areas have the most reliable broadband? Which areas have the least? How frequent are service outages? How much are long-distance phone costs? What does cell coverage look like? Where can we find community centres or other places that could accommodate patient gatherings? Are steaming services like Skype or Google Hangouts too data-intensive to be practicable?[v] Are there alternate web-services that might serve as suitable replacements?
These and many other questions need to be answered. Indeed, it is part of the work of patient-engagement to seek out such questions and struggle with them; to listen and respond to the needs and demands of service-users as part of an ongoing commitment to inclusivity. So while REFLECT 2017 was the first of its kind, and failing is part of trying something new, if the challenges discussed here are not addressed in some manner before next year’s event, we will have failed in a much deeper way. We will not only have failed to listen, we will have missed the opportunity to teach ourselves how to listen, and how to make space for such listening to occur. Such a result, the exclusion of hundreds of expert voices, cannot be anything but a profound failure of patient-engaged, suicide research in Canada.
[i] FNIM (First Nations, Inuit, Métis)
[v] Since writing this article I have been informed that many people in the north use Facebook Live Video as an alternative. We are looking into this as a possible tool for REFLECT 2018.
(This blog post was corrected on the 29th of September 2017)
This Sunday, October 1, 2017, we launch the first-ever REFLECT event, a forum in patient-oriented suicide prevention research. Our aim is to produce a best-practices guide for researchers seeking collaborators among the service-user population, and we have very high hopes for this conference, but already, we know that it will be imperfect.
Perfection is a troubling thing. We want it, but we know that we will never have it. We will strive for it, knowing we will fail, and yet it remains the goal.
In the case of REFLECT 2017, there are two major pieces that are already, to my mind, in need of repair. They were brought to my attention on August 14th by two Twitter users, @unsuicide and @couragesings, who posted comments on the Hatching Hub Twitter page. This post concerns the first of the two recommendations, with the second to be addressed in our wrap-up blog post coming next week.
@unsuicide’s comment had to do with a very important initiative, the “Patients Included” charter, which I describe here. They pointed out that REFLECT was not a “Patients Included” conference, with @couragesings asking if we would consider certifying future events according to the charter’s principles. We did. And we will.
The “Patients Included” charter is a vision that our team shares. And I think it is a perfect example of the kind of organizing that is needed right now: a clear statement of expectations, to serve as a base-line if collaborative scholarship between patients and physicians is to proceed. It illustrates some of the excellent work being done by patient advocates, as it does the need to publicize such work. It’s our hope that a best practices guide in patient-oriented suicide research, to come out of this year’s REFLECT conference, will serve as our contribution to these efforts.
If you haven’t heard of the “Patients Included” charter, I strongly recommend you visit this website (https://patientsincluded.org/). It is an initiative that was inspired by the experiences of Lucien Engelen of the REshape center, who was struck by a fundamental problem in research when attending a medical technology conference. In his words,
“When I was presenting at medical and technology conferences around the world people used to talk about what the patient wants, or what the doctor wants, without a patient, doctor or nurse being in the room. This astonished me, and a real page turner for me was a conference in Dubai, where all the major telecom companies in the world were present. Everyone was talking about mHealth, how huge it would become, and how many people would be using it, and thereby earning many billions of dollars.
When it was my turn to deliver my keynote, I asked the audience ‘How many patients are present here?’. Not one, it appeared.
That there should be so much talk about what patients need and want without them being present prompted me to take action.
I decided to no longer present nor visit conferences without patients being present on the stage, or as members of the organising committee, or offering patients bursaries to attend and waiving the entrance fee. During the following year, I continued to push my message and encouraged conferences that took action to use the Patients Included logo which I devised. The following year, I stopped accepting speaking requests if the meetings did not meet the Patients Included criteria.”[i]
To become a certified Patients Included conference involves signing a charter committing to five objectives:
1. Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.2. Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.3. Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.4. The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.5. Access for virtual participants is facilitated, with free streaming video provided online wherever possible.[i]
Patients Included conferences are identified by a self-certification process, providing conference organizers with a means of demonstrating their commitment to the above-stated principles. This involves committing to, and publicly signing the charter.
Happily, REFLECT 2017 already meets three out of the five objectives, with the signal exceptions of clauses three and five. At every stage of planning and development we have included collaborators and consultants with lived experience of suicide; patients and caregivers will be presenting, and participating as audience members. Bursaries were provided to allow patients and carers to attend as delegates, and disability requirements of participants have been given explicit consideration, with the aim of maximizing access to the event (Correction: To clarify, we were not able to provide travel bursaries for attendees this year. The bursaries provided only covered the costs of registration. A full discussion of this priority, and our intentions for REFLECT 2018, will appear in next week's blog post). We have discussed at length how we could best meet the fifth objective, but due to concerns about confidentiality, have limited access for virtual participants this time round. We will, however, be video recording the presentations, and making them available on our Youtube channel after the conference is finished.
REFLECT 2018 will be a Patients Included conference. We will be surveying participants attending this year to determine how we can best handle online streaming, recording and issues of consent, and will be making access for virtual participants a major component of planning for our event’s next iteration. In making us aware of this important initiative, I want to extend a big thank you to @unsuicide and @couragesings for their bravery and their advocacy.
[i] Engelen, Lucien. (Based on a Blog-Post from 15 February 2012) The Origins of Patients Included. Patients Included Charters. Retrieved September 27, 2017. From https://patientsincluded.org/
[ii] Patients Included. (May 2015) Conferences: What is the Purpose of the Patients Included Conference Charter? Patients Included Charters. Retrieved September 27, 2017. From https://patientsincluded.org/conferences/