Small steps towards the big goal of inclusion

Build solid relationships. Focus on slow, caring science.

Some of the insights that stayed with me from the Zoom calls on making our daily research practice more inclusive. The conversations were so rich (thanks to all 79 participants!) that I’ve summarized them in two parts:

  1. A summary of the presentation on inclusion in trauma research and clinical practice guidelines (published here)
  2. A summary of insights and resources shared (this post).

The starting point was our analysis of children’s voice and cultural representation in traumatic stress treatment guidelines. We found a strong adult-centered, white western lens.

The lack of inclusion is pervasive throughout research fields. So in the two Zoom sessions, we brainstormed tangible next steps for anyone doing research with humans. Obviously, the below is not an exhaustive list, but hopefully a good menu with suggestions for 2021.

We mostly talked about lack of cultural representation and racism, so the suggestions are geared towards that aspect of improving inclusion. But other topics came up as well. Including people with lived experience. Children as co-researchers. Addressing the still problematic gender gap in academia Supporting scholars from the LGBTQIA+ community. Shifting judgements about people from rural communities and low-SES backgrounds. The importance of intersectionality in everything we do.  

And even though we talked about small, feasible steps, it was clear that we want to take a long view: the last thing we want to do is something tokenistic. So planning ahead and slowing down in order to do things really right underpin everything.

Here are some of the specific things we can do:

Educate ourselves. There is plenty of material available, including this webinar on  the anti-racist imperative for public health data and this article on racism and publishing on health inequalities. High on my list is this book on decolonizing methodologies by Maori Professor Linda Tuhiwai Smith.

Search actively for & cite literature written by scholars from underrepresented groups. There are tools to help with this, for example this list of authors of color in social/personality psychology. If you know similar lists for other fields, please share in the comments! Again, this should not be tokenistic: properly read the work and let it inform your thinking and writing. Also, our systematic reviews should assess to what extent the body of work reviewed is inclusive.

Invite speakers from underrepresented groups in a way that works for them. The most well-known scholars from underrepresented groups are overburdened with requests. Search further than that. They may be happy to suggest up- and coming speakers. Another solution is using videos. In this year’s Africa Science Leadership Programme (never a shortage of inspiring speakers, but we wanted to give additional materials) we shared this amazing talk by Chimamanda Ngozi Adichie on the danger of a single story.

Stop talking about ‘hard to reach’ communities but connect with them; we often have unrealistic and unhelpful expectations of what it means to build relationships and trust in the context of research with underrepresented groups. “Really struggling to engage participants” is an oft-heard complaint by white/privileged/majority researchers. In this panel session on racism in mental health, one of the experts suggests (paraphrased): If you don’t have any contact with the community you study, how can you expect them to participate?

He had no issues with recruiting racial minority participants, because he had plenty of connection with the community he was studying. I’ve seen this in action many times, such as this fabulous work with Somali youth in the USA, and it was a key factor in the success of our study with young people bereaved by domestic homicide in the Netherlands. We had worked with many families long before we started the research; they knew we cared. One of the participants in our Zoom session said “I think it has to start with us genuinely assessing whether or not we are actually worthy of trust.”

Set up a community advisory board: not for one project but for the broader topic. An engaged community advisory board can provide essential input on design, recruitment methods, interpretation of analyses, any tools or products in development, and dissemination plans. An effective board needs time though. For example, children can be very effective advisors once they understand how research works.

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We revere evidence-based practice. But what if the evidence base itself is not inclusive?

Photo by Mario Gogh on Unsplash

Are you engaged in research? Take one of the projects you’re involved in…

  • Is the team lead a white person or a person of color? How about the rest of the team, who are you inviting on it?
  • Who are you studying; do they have a real say in the research agenda?
  • Who do you cite; do you actively search for and include scholars from underrepresented backgrounds?
  • Similarly, who do you invite to give presentations?

I’m talking to myself as much as I’m talking to you; there are so many areas where I should have been more inclusive (more on that later). This Wednesday/Thursday we hold a session (2 time zone options) to brainstorm small steps that we can already take to improve what we do.

Today, I wanted to talk about what motivated our team to organize this session: what we learned from our project on child trauma treatment guidelines.

Clinical practice guidelines are documents that inform clinical practice in several ways. They tell us what current evidence-based practice is, what the best trauma treatments are. They inform practitioners, prospective clients, professional associations, policy makers, program managers, regulatory agencies, and insurers, to name a few.

So they are important and influential. They can support equity and inclusion by means of their recommendations.

While doing an initial exercise of comparing recommendations across various guidelines, we got interested in children’s representation:

  • whether children had had a voice in the guideline process (as a ‘consumer’) and
  • whether their diversity of cultural backgrounds had been recognized and represented

The full – though short 😊 – commentary is available here (open access). Here is a quick overview of what we found: 

Voice:

As far as we could tell from the 14 sets of guidance documents we considered, children or young people had not been actively involved in the development process of the guidelines:

They will have had a voice via the input from child-focused practitioners and researchers but we didn’t find reports of facilitated discussions or consultation with children and/or young people allowing their voice to be heard directly regarding proposed guideline questions, procedures or recommendations.

Cultural background:

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Making our daily research practice more inclusive

Making our daily research lives more inclusive

For the researchers among us, the quality of our findings and resulting policy/practice change depends on how well we work together with the populations we study.

Underrepresented groups are exactly that: underrepresented. Not only in research samples but also in those who lead the research, or are invited on the team.

Next week, we’re organizing two 1-hour conversations on Zoom (offered twice to accommodate time zones) on generating feasible ideas to make our daily research practice more inclusive.

Our starting point is this recent commentary on equity and inclusion in trauma treatment guidelines (several commentary authors will join). We anticipate the conversation to be relevant beyond the trauma research field, and colleagues across disciplines are welcome.

We will discuss how we can be more inclusive in, for example: a) how we construct our research teams, b) what we study, c) how & where we communicate findings, and d) how we give credit (and who we cite!)

We will gravitate towards tangible actions that are feasible for PhD students and early-career researchers.

Our two sessions are (check the links for time zone conversion):

And you can register here to join us – I hope to see you there!

Artist Luka Lesson and colleagues on (lack of) inclusion:

https://youtu.be/D-HED2UXwbw

Homicide of children with a disability

Children with a disability are at greater risk of death at the hands of someone else – through homicide or the effects of maltreatment – than children without a disability.

John Frederick* has led a systematic review looking at the theories that explain why this is the case. Here is John:  

There is growing recognition of the increased vulnerability to abuse of children who are disabled. Specifically, within the literature on homicides and maltreatment-related deaths of children, disabled children have been identified as likely to experience a greater risk.

We systematically reviewed the empirical literature to better understand the risk factors involved and assess support for the theories that have been proposed to explain this greater risk.

To start with the latter, what are the theories to explain disabled children’s higher risk? They respectively focus on:

  1. The stress of caregiving;
  2. Altruistic intent;
  3. Lack of bonding with the child;
  4. The challenging behaviours of the child;
  5. Cultural beliefs about disabled children; and
  6. Evolutionary imperatives.
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From Trauma to Recovery – A blog post on the 35th Annual Meeting of the International Society of Traumatic Stress Studies (ISTSS) in Boston

Curious to know what the recent ISTSS conference was all about? Many thanks to Yoki Mertens for this reflection on the meeting! 

It is early morning in a freezing-cold Boston and Judith Herman presents as the first keynote speaker of the 35th Annual Meeting of the International Society of Traumatic Stress Studies (ISTSS). One might assume the organizers scheduled it this way to ensure everybody arrives on time and it worked: The room is filled with over 1,700 attendees, more than ever before. It’s been 27 years since Judith Herman published her renowned book “Trauma and Recovery” and introduced the concept of complex PTSD. Back then, the New York Times called it “one of the most important psychiatric works to be published since Freud”.

The prevailing question of this annual meeting is: How far has trauma research, trauma therapy, and policies come in helping individuals with (complex) PTSD recover in the past decades? And which paths to take to move forward? After three days of attending symposia, panels, and poster sessions, it can be convincingly stated that steep progress has been made. Meanwhile, some challenges are left to be solved for the current generation of trauma researchers and clinicians. Continue reading