Hospice, bereavement content, and trauma-informed design

I’ve been writing about my thoughts on trauma-informed design and how we might apply that in the work I do in bereavement content for hospice. You can check out the previous articles in the series here:

1. Good content design is not easy
2. The value of safety in design
3. Do you trust me?
4. Together is better
5. Designing with people who are grieving
6. Can you hear me now?
7. Grief is global
8. Content, grief, and hope

I’m not entirely sure where to go from here. I want to sit with my thoughts for a bit. I don’t want to rush the process of thinking and mulling over what it looks like to practice trauma-informed design with our bereavement websites. But I also don’t want to get out of the habit of writing. I missed last week and wanted to get back on track and write this week.

This article may be more of a way for me to organize my thoughts. I may ramble a bit more than usual. In my first article in the series, I said that our first step is to define what trauma-informed principles are for our organization. That seems like a good place to start. As I unpacked SAMHSA’s six guiding principles and Chayn’s eight principles, I found myself asking so many questions and understanding some adaptations to my specific context.

Safety

• Needs to include both physical and emotional safety.
• Trauma is multi-layered for our families. The death of their loved one is traumatic. They may also be coming to us with a history of trauma both related and unrelated to their loved one’s illness.
• Plain language, ease of search, and clear navigation promote comfort and consistency. Comfort and consistency help create safety.
• Informed consent must be explicit. Our families must be able to refuse cookies and still find helpful resources. They must have multiple ways to contact us if they don’t want to fill out a form that stores their information. Do we provide them options?
• Do I see my users as actual people or nameless data points who provide information? How can I tell the stories of our families and offer support to them in ways that respect, include, and care for them?
• Is the content actually useful to our families? Is it usable? Is it easy to find?

Trustworthiness and Transparency

• We are upfront and open in what we do, what we say, and how we support our families.
• Can our families find the information they need quickly? Can they understand it? Even as I write those sentences, I see the overlap with the last point under Safety. And that’s why I’m pulling my thoughts all together in one place.
• Is there continuity in our communication with our families — from our front-line workers to our medical staff, to our digital and print content?
• Can our families expect the same quality of care after the death of their loved one as they experienced before? The type of care may be different, but the quality should not be.
• What does it look like to serve our families as well after death as we did before death?
• How can we include our families in our design process? How can we learn from their lived experiences to better serve them?
• How do we work with bereaved families in a way that doesn’t re-traumatize them?
• How can we own our mistakes in a way that increases trust?

Peer Support

• Talking with our families is crucial. How can we do more of that?
• How can we share stories that will reassure our families that they are not alone in their grief?
• How can we encourage families to share their own stories in their own words?
• How can we make it possible to opt out of reading those stories is someone is not ready to see them?
• Can we give families the opportunity to connect with each other if they choose?
• How can we utilize and expand our support groups to increase the support families offer to one another?
• How can we better utilize our existing hospice volunteers to provide peer support to our families? How can our website support those efforts?
• How can we as a team provide support to each other?

Collaboration and Mutuality

• How can we make user research a priority?
• How can we empower our families to tell their stories?
• How can we involve our families in the creation, organization, and distribution of our bereavement content? What would that even look like?
• How could we begin to start some co-designing with our families?
• Could we utilize our hospice volunteers to develop some research and design cohorts? How would we recruit, use, and value those volunteers?

Empowerment, Voice, and Choice

• Hospice has empowerment, voice, and choice already at the core of what we do. How can we extend that to our content and design?
• How can we have a better understanding of the issues, challenges, concerns, and questions that our families have?
• How can we listen more?
• How can we build better relationships with our families, even after the death of their loved one?
• How can we be more humble?
• We need to remember that we do not have all the answers, we cannot fix everything that is broken, right every wrong, or solve every problem.

Cultural, Historical, and Gender Issues

• The ways in which we address grief will be uniquely shaped by who we are — our culture, our family history, our gender, and any number of other factors that make us who we are.
• Do all our families feel welcomed by our content? Or do some feel excluded or as if the content is for someone who is not like them?
• How can we expand the types of resources we offer to better reflect the wide range of identities of our families?
• What do we do about localization and translation?
• How can we welcome in and highlight different cultural approaches to grief?
• How can we make our content more accessible?

Hope

• How can we offer hope and healing through our content to our families?
• How can we as a team ensure we are all rowing in the same direction towards hope and healing?
• How can we balance our desire to effect change with the slowness of change and the need for grace and patience with our families?
• Can we dream together about what trauma-informed bereavement content could be?

That’s a lot of questions, a few statements, and so much to think about. I realize a lot of my job requires time to think, time to wonder. I tend to be a rather impatient person. I want to rush ahead. But that is absolutely contrary to being trauma-informed.

So I’m going to print out these questions and statements. I’m going to post them up in my office. I’m going to sit with them for awhile. I don’t want to lost sight of them in the crush of things that still have to be done. But I also don’t want to be hasty in making decisions and implementing things poorly. I don’t know what that means exactly for moving forward.

Thanks for listening to my wonderings. And thanks to those of you who followed along through the whole series. The next step is to work with my team to come up with our own set of trauma-informed principles. That raises its own set of concerns, since I’m a solo content designer. My team thinks very differently about what being trauma-informed looks like, since they are not involved in content.

But I can’t do this alone. I’m not done writing about trauma-informed design. I’m certainly not done thinking about it.

If anyone has worked with their team to come up with trauma-informed design principles that are specific to your context, I’d love to hear from you. How did you go about introducing the concept of being trauma-informed to your team? How did you adapt the principles for your context? I could use a little peer support on this one.