I’m a community health worker for a living, and one of my duties is to help host a quarterly meeting to get all the regional coordinators in my state together to talk about how to get our programs to more people, keep people engaged, and achieve the best outcomes for the people we serve. Sometimes these meetings are boring info sessions about marketing strategies and panel management* but sometimes, like this time, we get into the nitty-gritty of what we can do as health care educators to keep people in our programs and help them get the most out of them.
To my delight, at this meeting we had a conversation about how language affects access to programs, and managed to inject some feminism into a field that largely doesn’t engage with social justice practices.
One of our self-management programs, WRAP, focuses on helping people take charge of their mental health. The success of the program lies in instilling the belief that participants are the experts on themselves—they must take charge of their wellness. From the beginning of the program, the facilitators discovered they were having difficulties with the language they were using. Although this problem is particularly apparent in WRAP, it applies across many self-management disciplines.
Language is shaped by culture, age, environment, education, personal biases, location, experiences, identity and a variety of other factors. It’s not static, and it’s tightly connected to how you see the world. Bringing people together from diverse backgrounds, who may have different understandings of words and concepts, presents a unique challenge. It’s especially important to use language carefully because first impressions are incredibly important. A confusing or negative interaction with a health/wellness agency can have lasting repercussions for people seeking health care.
Self-management is, fundamentally, about changing the idea of wellness from something that is in a teacher or a medical provider’s hands to something that’s in the health-seeker’s hands. Each person knows their own vulnerabilities, and is therefore the only true “expert” on a successful wellness plan. This means that every participant needs to have a good understanding of what the words used to talk about their own wellness mean, and what the other people in the group expect from them.
From the recruitment materials, which need to use language that doesn’t turn people off, to the group values, which need to mean the same thing to every participant, language used by self-management facilitators has to be clear, positive, and most importantly widely understood with an agreed-upon definition.
Here are a few areas where attention to language can make self-management programs stronger:
1. Advertising and Recruitment
When you think about advertising, do you mention illness? Are you labeling? Are you giving out a picture of helplessness and disability? Are you “robbing people of their hope”? Workshops that are too illness-oriented may encourage people to think of themselves as their diagnosis, which sometimes makes it difficult to believe that change is possible. A colleague at the meeting discussed her decision to change the language in her Livestrong (group for people with or recovering from cancer) from “survivor,” which is not a label everyone wants to apply to themselves, to “growing stronger together,” which covers both the people who want to think of themselves as survivors and the people who want to move on from that aspect of their life.
Another facilitator pointed out that using the descriptors “provider,” or “primary care” can turn people off, but using their doctor or nurse’s name helps give participants a sense of involvement in their healthcare, and makes them more likely to participate in self management groups. In addition, our programs can seem very specific-disease-focused, but many of them can be expanded to fit the needs of many different types of people with chronic conditions, as well as people simply looking to improve their health. Changing the program language will make participation more attractive to people who may not feel like “a person with diabetes” or “a mentally ill person” etc…but who can still benefit from the programs.
2. Participation and Trust Within the Group
One facilitator explained that she will stop a class to explain a word, or acknowledge that the group needs to agree on a definition. Words like “respect, confidentiality, etc…” can trip people up. If you stop and agree on a definition, it gives people with less cultural privilege more power because they contributed to defining the word in a way that works for them.
One facilitator has started walking groups to get to know people and be able to funnel them into the classes since they’re already coming out for socializing and exercising. She’s earned their trust in a low-stakes setting, and she uses that trust to sell self-management groups.
3. Sensitivity to Marginalized Groups
People in poverty have different needs, and different populations may be either limited in the choices they have (by finances, or being incarcerated, etc…) or never having been introduced to the concept of self-management as a positive thing. Language use is particularly important in this context–it needs to be engaging, non-intimidating, and logical.
Meeting people where they are is also essential. Even a frank conversation about what support someone might get from, say, a group of heroin addicts, can be detrimental if you are too aggressive. Be prepared for people to say that they really do have support from people who seem like poor supports to you, and be prepared to accept and support their decisions. The tone of your questions makes a difference in how successful you’ll be in offering different ideas for their wellness. Thinking of yourself as a peer, telling/bearing in mind your own personal stories can help you empathize and build a connection.
4. Health Outcomes for the Participant
It’s important not to discourage people from exploring their options. It’s tempting to paint your program as the best in the land, but in reality, the more resources people have to improve their health, the better! Focus on the person needing health care—more options is nearly always better. Remember that once you’ve engaged someone you need to have things to offer them, such as a follow-up class once theirs ends, or you’re going to lose momentum.
Language also needs to be carefully crafted not to stifle people’s efforts to self-advocate. People can start out very aggressive when taking charge of their health, but if we remain calm and not defensive, we can learn a lot about what works best for them. We also need to be careful not to, accidentally or otherwise, separate people from their organic/natural supporters just because we don’t believe them to be the best kind of support. More support and less judgment is always the best way to build trust.
5. Keeping Yourself in Check
Attend trainings. Accept feedback graciously. Keep up with trends in social justice language use. But, most importantly, listen to your participants. Body language, level of engagement, and literacy levels are some ways that you will know that the way you’re talking needs to change. Paying attention to signs of ability, interest, comprehension, and emotional buy-in is a good way to tell if you need to change your approach.
Self-Management programs are life-savers for many chronically ill people, but they work best when the people delivering the programs are flexible and keep the best interests of the participants in mind.
*Ask me what this is in the comments if you’re curious, but it’s nerdy public health stuff so be warned!