My heart goes out to everyone who is affected by the floods in Germany, Belgium and the Netherlands. Over 150 deaths and many people missing. So much new disruption and loss on top of the pandemic.
From a trauma perspective, the key priorities are common sense ones: safety first, good communication, connecting people with loved ones, and reiterating that individuals and the community – with adequate support – can handle this.
Authorities and the community are on it, and both professionals and volunteers have been out in force to reduce the physical impact of the water.
As always, I’m thinking about how this experience may be for the children and young people in the regions that are affected. Many children will have lost a loved one or had scary evacuations. A few will find it an exciting adventure. Most will have to deal with a big muddy mess over the next few weeks.
Every child will have their own story. There will be differences in what happened and is happening, how their parents and other adults around them react, and in how they interpret it all.
What I’m concerned about is the cumulative impact of the pandemic and this disaster. Many children have already experienced major disruptions to their daily life, friendships and routines due to lockdowns, school closures, parents’ job losses and illness in their direct environment.
Still, even in these extra difficult circumstances, a large proportion of children will be resilient. They will find their way through this, bond with friends over it, chat with their parents when necessary, express themselves in a way that’s helpful to them, and continue growing and developing.
A summary of the presentation on inclusion in trauma research and clinical practice guidelines (published here)
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.
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
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.
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):
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: