Inclusivity and Power: A Series on Language in Mental Health Research

Nicole Dunn

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.

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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.

 

 

The Hatching Ideas blog contains discussions of mental health, suicide, social vulnerability and other, similar topics. The topics discussed may prompt unwelcome reminders, and we ask our readers to exercise discretion when reading. In case of an emergency, please contact your local health provider or dial emergency medical services (9-1-1).

Nov. 28th Live Twitter Chat with The Mental Elf and We Mental Health Nurses

Craig MacKie

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!   

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The Hatching Ideas blog contains discussions of mental health, suicide, social vulnerability and other, similar topics. The topics discussed may prompt unwelcome reminders, and we ask our readers to exercise discretion when reading. In case of an emergency, please contact your local health provider or dial emergency medical services (9-1-1).

REFLECT 2017 to REFLECT 2018

Craig MacKie

(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.

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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[2] 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[3] 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[4]. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
5.      Access for virtual participants is facilitated,[5] 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/

The Hatching Ideas blog contains discussions of mental health, suicide, social vulnerability and other, similar topics. The topics discussed may prompt unwelcome reminders, and we ask our readers to exercise discretion when reading. In case of an emergency, please contact your local health provider or dial emergency medical services (9-1-1).

World Gratitude Day - Finding Sanctuary in "Enough"

Nicole Dunn

During one of my most personally challenging semesters at school, a peer encouraged me to reflect on things that I was thankful for. With this in mind, I started a “3 good things jar,” where before bed each night I would write down three things that I was grateful for that day and place it in the jar. At first these lists included small and seemingly insignificant activities like “prepared lunches for the week,” “went to class,” and “called my Vovo.” But over time, this exercise became more detailed, as I began to acknowledge that my smallest "enoughs" held much to be grateful for. Things like “the girl who smiled and said thanks when I picked up her books that fell,” “the very snowy snowstorms this week,” and “working an extra late-night shift and feeling loopy with friends” started to show up. This task quickly became a ritual, and soon I had a jar filled with confetti positives. I was even excited for my bed time ritual because some nights I had way more than three things to write down. It’s true that motivating myself to not just think about what I was grateful for, but also have the intention to write it down, took some effort. And yes, some nights I would crash before the list was possible. But overall this task has always made me experience more joy. I didn’t know it then, but I was doing a little more than being thankful, I was practicing gratitude.

Historically we know that practicing gratitude has been situated within various world religions. Only within the last few decades has this topic gathered research interest. So far, the academic investigation of gratitude has primarily focused on understanding the short term psychological interventions, but even these limited studies show promising results. In one early study, researchers found evidence that making gratitude lists helps us acknowledge “small wins”– powerful reminders that good things can come in small packages [1]. In another study, individuals were asked to make lists of things that have been going well for them every day for one week. This group was then compared to a control group asked to write down lists about early memories. The “going-well” group reported an increase in their levels of happiness [2]. Consistent with these findings, a third study found that individuals who spent time writing about the positive things that happened in their day experienced improved mental and physical well-being at a three-week follow up [3]. These findings are exciting and, more importantly, accessible.

As a Research Assistant on The Beacon Study I feel compelled to ask, “How might the power of gratitude be harnessed to support individuals living with thoughts of suicide?” To date there is some preliminary research in this field. In one study researchers found that among college students, high levels of gratitude and grit at baseline characterized individuals who would later report the greatest reduction in suicidal ideation over time [4]. In another study concerning adolescents, researchers found that gratitude was uniquely associated with suicidality. Specifically, the authors found that suicidal ideation and suicide attempts among this population were lower among adolescents who scored higher on measures of gratitude [5]. Fortunately, no one person has any fixed amount of gratitude. It is something that can be practiced to reframe how we conceptualize our world. This means that through the use of gratitude exercises, it is possible to foster meaning, and by extension, resilience in the face of obstacles.

In keeping with this logic, one of the features in the Beacon smartphone application includes a journal function where many of the prompts centre on encouraging participants to reflect on aspects of their lives that they are grateful for. For example, some of these prompts include:

·         “One way I can be thankful for the challenges I’ve experienced are…”,

·         “One thing I appreciate is…”,

·         “I can say thank you more by…”, and

·         “One thing I am taking for granted that I am actually grateful for is…”

Our hope is that access to these prompts will support participants in building up their resiliency tool box, and continue to find meaning in their activities of daily living.

If you’re looking to start practicing gratitude or want some new exercises, a quick search on Google brought up a host of ideas for me. Listed below is a link that provides “40 Simple Ways To Practice Gratitude.”[6] From this document, a new practice that particularly interests me is “Include an act of kindness in your life each day.”

With all of this in mind, it seems only appropriate that on World Gratitude Day I make some space to reflect on what I’m grateful for. So, without further ado:

1.      I am grateful for being able to research suicide, an important and challenging public health issue that deserves attention.

2.      I am thankful to have supportive friends, family, and colleagues who make room for tough conversations and emotions to exist without judgement.

3.      I appreciate that my cozy bed is waiting for me at the end of each day.

“‘Enough’ is a feast.” – Buddhist Proverb

References

[1] Weick, K. E. (1984). Small wins: Redefining the scale of social problems. American Psychologist, 39, 40-49.

[2] Seligman, M. E. P., Steen, T. A., Park, N., & Peterson, C. (2005). Positive psychology progress: Empirical validation of interventions. American Psychologist, 60, 410-421.

[3] Bono, J. E., Glomb, T. M., Shen, W., et al. (2013). Building positive resources: Effects of positive events and positive reflection on work stress and health. Academy of Management Journal, 56, 1602-1627.

[4] Kleinman, E. M., Adams, L. M., Kashdan, T. B., & Riskind, J. H. (2013). Gratitude and grit indirectly reduce risk of suicidal ideations by enhancing meaning in life: Evidence for a mediated moderation model. Journal of Research in Personality, 47, 539-546.

[5] Li, D., Zhang, W., Li, X., Li, N., & Ye, B. (2012). Gratitude and suicidal ideation and suicide attempts among Chinese adolescents: Direct, mediated, and moderated effects. Journal of Adolescence, 35, 55-66.

[6] Conlon, C. (2014, March 6). 40 Simple Ways To Practice Gratitude. Retrieved September 19, 2017, from http://www.lifehack.org/articles/communication/40-simple-ways-practice-gratitude.html

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The Hatching Ideas blog contains discussions of mental health, suicide, social vulnerability and other, similar topics. The topics discussed may prompt unwelcome reminders, and we ask our readers to exercise discretion when reading. In case of an emergency, please contact your local health provider or dial emergency medical services (9-1-1).