Q&A: Use person-centered approach when discussing type 1 diabetes screening
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Key takeaways:
- Providers can use motivational interviews to encourage people to be screened for type 1 diabetes.
- Having resources on hand during discussions can prepare families for screening and what comes next.
Kavookjian said type 1 diabetes screening is a difficult topic to discuss for many families who already have a first-degree relative with the disease because they know first-hand the life-changing impact it can have.
“When you think about the parental instinct to protect their children, even thinking about getting a test result can produce a lot of anxiety,” Kavookjian told Healio. “Some cons to screening that [parents] have mentioned is they don‘t want to know, it’s going to change the way we treat this child, it’s going to change their quality of life, it’s going to create a lot of anxiety and stress in the family, it might affect the family dynamics, it might affect sibling relationships. These are some of the reasons why someone might be resistant.”
Healio spoke with Kavookjian about why people at high risk for type 1 diabetes should be screened for the disease, how motivational interviewing can be an asset in speaking to families and about resources that are available to educate providers and families.
Healio: Why is talking about type 1 diabetes screening such as difficult topic to discuss with people? Also, why is this so important?
Kavookjian: There’s robust evidence that’s emerging every day of what we know about type 1 diabetes, its progression and the early stages that are usually asymptomatic. What drew me to this topic was this really deep look into the risk, especially for children from birth up to age 17 years, who have a family member with type 1 diabetes. The evidence shows that they are at 10 to 15 times greater risk for ending up with type 1 diabetes than the general population that does not have a family member with type 1 diabetes. That is a big risk and it’s multiplied with the more family members they have.
A simple test for antibodies can be done if they test positive for two or more autoantibodies, then it’s very likely they are currently in at least stage 1 and maybe even stage 2 type 1 diabetes. There is such value in having that information from a clinical perspective. Since we know that for a large proportion of persons newly-diagnosed with type 1 diabetes, it is identified when they are in the emergency department or ICU with diabetic ketoacidosis, which is life-threatening and has lingering clinical detriments that can be avoided if DKA is not the first experience in their type 1 diabetes trajectory. If we can inform the family that this is what’s happening and educate them, then they are able to prepare and watch for the signs so that DKA can be prevented.
Healio: What are some of the advantages of motivational interviewing?
Kavookjian: There is a vast evidence base for motivational interviewing when it’s appropriately trained and applied. It exists across a heterogeneous contexts, including various diseases, target behaviors, populations, interventionist types, settings, etc.
The bottom line is motivational interviewing has a technical dimension, the communication skills and a relational dimension, a caring and non-judgmental approach. Whether this is a one-time encounter with somebody or an ongoing relationship with that person, the top priority is preserving the relationship, really building that trust and that therapeutic alliance. It includes person-centered strategies like listening and empathy, supporting autonomy and self-efficacy, first eliciting from the person their views, preferences, perceptions, ideas, inputs and knowledge before that health care provider gives their information, advice or goal setting. If I hear myself tell you the reasons why I know I need to engage in a health behavior, or how it can happen in my daily routine, or setting my own goal for how I will make it happen, then, according to self-perception theory, the very hearing of that in my own words, brings up this urge or internal motivation that I need to do something about that. But if I feel defensive because the communication violated my autonomy or sense of competency, and instead talk about the reasons why I can’t do that … then hearing myself talk about the reasons I can’t do it deflates that urge, it deflates that internal motivation.
Becoming aware of one’s communication habits that can be violating and put a person on the defensive is a key first step for a health care provider hoping to communicate in outcomes-impacting ways.
Healio: How can someone use motivational interviewing to discuss type 1 diabetes screening with someone who is resistant to the screening?
Kavookjian: There are a few autonomy-supporting strategies in motivational interviewing that are especially important in talking with someone who is resistant about a target behavior. One of these that is a hallmark of motivational interviewing is what we call permission asking, or asking for consent. I might ask that person, “Do you mind if we spend a moment talking about screening for type 1 diabetes in your child, since your family has one or more first-degree members with type 1 diabetes?” That question is permission asking. It’s conversational.
People appreciate the autonomy support. They probably couldn’t tell you what that’s about, but it feels good, it feels respectful, it doesn’t feel violating, and they are going to feel like you’re in their corner and they’re much more likely to engage with you and trust you.
Another great conversation starter for that topic is asking, “What have you been told?” Or instead of saying “Have you tried screening?” say, “What are your thoughts about screening?” or “How would you feel about getting Janie screened now that we know another member of your family has type 1 diabetes?” These are two great readiness assessment questions that are open-ended, that are nonthreatening, and you can learn more with open-ended questions than by asking yes or no questions..
Healio: What are some ways a diabetes care and education specialist can show empathy to a person when discussing type 1 diabetes screening?
Kavookjian: My view on expressing empathy is that it is essential and can only be facilitated with active listening. It should be at the top of the list of communication skills. It has a vast evidence base of its own as a stand-along person-centered communication skill and approach. Motivational interviewing as a framework includes empathy or empathic responding in the relational and technical dimensions.
The initial response for anybody who’s either expressing a strong emotion or resistance is what I call early empathy. For example, a parent may say, “I don’t think I want to take time to answer your questions about my son’s risk, it’s been a stressful day.” The empathic response would be to call that person by name and then say, “It sounds like you’re having a challenging day.” Then use an open-ended question to explore that resistance, such as “Tell me more about that.”
Among the few thousand health care providers I’ve trained in motivational interviewing, I’ve observed two different types of common responses when they are met with resistance from a patient. They will either change the subject or end the conversation and walk away because they don’t know what to say first in what feels like a confrontation. The ideal first response is early empathy and then open-ended exploration, especially if they’re very resistant. You want to defuse that by letting them know, I’m not agreeing or enabling when I empathize, I’m just respecting you where you are.
Another autonomy-supporting strategy that is useful in addressing topics for which the person may be resistant is called agenda setting. It’s like permission asking, but I’m giving them choices. For example, I may say, “Now that you’re in stage 2 for type 1 diabetes, we can talk about developing your monitoring plan, other health behaviors you can do to help, or treatment options that can specifically delay the onset of stage 3 type 1 diabetes. Which of these would you like to talk about first?” If one of those options was a sensitive or resistant topic, then the person is probably not going to pick that first. So instead, that sensitive topic is in that list and is already comfortably introduced as a discussion topic, but you’ve given them choices. They’re going to pick what they’re comfortable with or what’s most important to them and that gives the practitioner time to develop rapport and trust before moving to the difficult topic.
Healio: How important is it for a diabetes care and education specialist to educate themselves about the latest recommendations on type 1 diabetes screening, and how important is it to have resources available?
Kavookjian: ADCES coordinated with some experts who author seven relevant modules in ‘Your Guide to T1D Screening’ (funded by an educational grant from Sanofi). The modules are brief and concise with focus on the high-level things to know across relevant key topics in the screening space, and each of those has a set of three to five key takeaways. The guide is free and easily accessible on danatech.org. Breakthrough T1D, Sanofi and the American Diabetes Association also have some resources and handouts.
It’s also very important to note that not every person is going to approach with the same literacy level, whether it’s literacy of the written and spoken word or health literacy. It’s really important to communicate in plain language in this new and highly technical topic – keeping medical jargon out of the conversation is important in raising awareness and helping facilitate decision-making about screening.
Also, be ready with whatever resources that you need, particularly when it comes to talking about staging, screening and where to get it, what the results mean, and what comes next in monitoring plans. Having handouts about each of these topics ready to provide during that conversation will go a long way toward supporting decision-making and commitment to the decision to screen. Some of this information may also encourage opportunities to engage in research and its screening via entities like TrialNet or ASK and getting a kit or kits sent to the family who will mail it back. Or, it also may be that they’ll go to a local lab to have it done there.
Then, be prepared to let them know what comes next. We know that 95% of people that get screened will not test positive. That’s a double-edged sword because on the one hand, that could be a motivator to get screened for the peace of mind they believe is probable. People could also think the chances are low, so they decide not to get the screening. It’s a place that puts people on the fence. It’s also important to know that there is tremendous variability in how a person transitions through the type 1 diabetes stages, and this can create confusion when a parent asks how long it will take from the time they get a positive screen until they are in the insulin-dependent stage 3, and there just isn’t a concrete answer to that question. Not having that answer leaves uncertainty and a sense of losing control, which may influence a person to decide to put off the screening decision.
Being prepared for a person-centered response to that situation can go a long way towards supporting their decision-making; having materials on hand with general information and links to more details online can help in their decision-making. If they do decide to get the screening, it is important to interview them in a way that they can hear themselves set the goal for when it can happen and make the commitment at that time by going ahead and scheduling the appointment for the appointment for the screening.
Reference:
- Kavookjian J. Talk about T1D screening with families: Communication techniques that work. Presented at: ADCES24; Aug. 9-12, 2024; New Orleans.
For more information:
Jan Kavookjian, PhD, MBA, FAPhA, FADCES, can be reached at kavooja@auburn.edu.
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