Counseling, Aural Rehabilitation, and the CARE Project: Interview with Johnnie Sexton, MS
Douglas L. Beck, AuD, speaks with Sexton about the CARE Project (training in Counseling, Aural Rehabilitation and Education), the seven stages of grieving related to hearing loss, and more.
Academy: Hi, Johnnie. Thanks for your time today.
Sexton: Hi, Doug. My pleasure, it’s nice to speak with you again!
Academy: Thanks, Johnnie. Would you please tell me about the CARE Project?
Sexton: Absolutely. The “CARE” Project stands for counseling, aural rehabilitation, and education. I’ve been thinking about it and developing it for a few years now, and there are a few components to the CARE Project. It creates a sense of community, it opens doors, and moves people forward and, importantly, it facilitates advocacy and acceptance. As audiologists, we often deliver “one-way” communication essentially based on content, and this is what the CARE Project seeks to improve. Of course, many people have addressed this previously. So in essence, we as a profession haven’t addressed emotions and feelings as well as we could, and to me, this seems like an area for professional growth.
Academy: I agree. I know Dave Luterman, Kris English, John Clark, Michael Harvey, and others have addressed counseling and aural rehab (AR) and things we can do to improve our professional communications while better addressing the needs of the particular patient. In fact, from my perspective, the renewed interest in counseling and aural rehab is a “back-to-the-roots” movement.
Sexton: Absolutely. Audiology started as a counseling and AR-based profession some 60 years ago. Naturally, as we became more diagnostic-, treatment- and technology-oriented, we matured and learned more than could be imagined about audition, but along the way, we may have lost focus a bit and become too dependent on diagnostic, treatment and technology, and this back-to-the-roots movement helps to complete the circle.
Academy: I agree. It makes sense, it’s something we’re very good at, and it’s something the patients really benefit from. So what’s the first step in improving our counseling skills?
Sexton: I’m glad you asked that. I think most of us would agree the first step is to become a better listener. That is, we need to put aside our white lab coats and tools and just listen to our patients, to their questions, their concerns, and their issues. We need to be sure to work within their agendas, so as to do the best we can for them, while allowing families to grieve and go through the process.
Academy: So in particular, you’re speaking about moms and dads who have recently had a newborn diagnosed with hearing loss?
Sexton: Yes, that’s right. Doug, as you know, 95 percent of all children diagnosed as deaf at birth are born to hearing parents. As such, the parents have no knowledge of hearing loss or deafness and they have no idea what to do first, or what to ask, or how to go about taking care of a deaf child. So rather than reading from a script, it’s more effective to just listen at first, and evaluate where they are and what they need.
Academy: Makes perfect sense. Of course, audiologists are very well prepared to handle the questions about hearing aids, cochlear implants, FM and such, but in general, the parents are not ready for that discussion until after they address the fact that their baby does not have normal hearing, and in fact has a significant hearing problem, and everything is going to be different from what they probably imagined.
Sexton: Exactly. And to me, the stages of grieving are very real and they expand upon Dr. Kubler-Ross’s five psychological stages of dying; denial, anger, bargaining, depression, and finally acceptance (see reference at end of interview).
Academy: But if I recall, the CARE Project is based in seven stages of grieving?
Sexton: Right. The stage one that I propose is based on the writings of Kris English, it’s shock. Simply stated, when parents learn their newborn child has a significant sensory problem, they are in shock and there are many emotions and feelings that go with that. The second stage is denial, which centers around the parents thinking, “Surely this cannot be the case. Not my child. The tests must be wrong….” And the thing is, denial is a totally reasonable next step. All of us would go there, too!
Academy: I’d like to get your thoughts, but as I see it, there’s no reason on Earth to ever tell a patient or family they’re in denial. Denial is a stage, it’s something to observe and recognize, but when someone points it out—it just makes things worse and the then the person in denial usually gets defensive about it, too.
Sexton: Exactly. There is no point in telling people which stage they’re in! First of all, as you pointed out, there’s no benefit, and indeed, they may become defensive. Further, these stages are useful for us to recognize so we can be better listeners and counselors, but sharing the stages with the patient offers little benefit to the patient. Again, our goal is to be a better listener and to validate their feelings. Telling them they’re in denial does not serve our goal! So then, stage three is pain. Once they get past denial and they accept the diagnosis, pain tends to set in. Step four is anger. People tend to get angry about their diagnosis.
Academy: You mean externalized anger?
Sexton: Yes. People might get angry with their spouse or significant other, their other children, perhaps God, or their parents or family. Anger is valid and some people do act out more than others, but it certainly does occur. The fifth step is depression and, in many respects, depression is the beginning of acceptance.
Academy: However, if the person doesn’t get through his or her depression in a few weeks, or if his or her depression lingers and actually starts to interfere with work, daily activities or social life, that would seem to merit a referral to a psychologist?
Sexton: Absolutely. The CARE Project is in no way a substitute for mental health counseling. When we witness traditional, emergent or extreme referral criteria, of course we refer.
Academy: The rule of thumb I learned many years ago is, if you’re wondering about whether the behaviors you’re observing merit a referral—refer!
Sexton: Yes, that’s a good rule of thumb. And the sixth stage is acceptance. This stage means “okay, we’re there, we get it, and we can now address it.”
Academy: It seems that this is the stage where content-counseling makes the most sense?
Sexton: Exactly right. Yes, if we offer solutions and alternatives before the patient or their family is ready, willing and able to accept it, it just doesn’t serve the patient very well. It’s so important to get the timing right to provide maximal transfer of information at the most advantageous time for the patient and their family.
Academy: And then even if all this is done very well…there’s still one more stage?
Sexton: Yes, the final stage is advocacy. We move the patient and his or her family toward becoming his or her own advocates, to give the child or the family member the best opportunity to have the best life they can with the hearing they have.
Academy: Okay, this is all very interesting and I applaud you for putting the whole CARE Project together. How do people learn more about it?
Sexton: We offer audiologist training through our workshops and something called the CARE Package, which includes lots of excellent materials. The workshops can be booked for on-site presentation anywhere with me or my staff, or they can be done here. The CARE Package includes the Power Point slides for facilitators, the two-hour documentary film for teaching purposes, the Literacy Package, which is meant for families and classrooms and has curriculum goals and there are some other things, too. And, as you guessed, the CARE Package will be available along with the workshops and the whole package will be ready by February 1, 2010.
Academy: Johnnie, this sounds like an extraordinary offering and the timing is excellent, as we get more and more involved with “back-to-the-roots” movement of AR and counseling.
Sexton: Thanks, Doug. It’s been exciting putting it all together and getting lots of feedback and suggestions from peers and colleagues.
Academy: Thanks for your time, Johnnie, and good luck with the CARE Project.
Sexton: Thanks, Doug.
Johnnie Sexton, MS, is the private practice owner of John E. Sexton & Associates in Greensboro, NC.
Douglas L. Beck, AuD, Board Certified in Audiology, is the Web content editor for the American Academy of Audiology.
For More Information, References, and Recommendations
Counseling Children with Hearing Impairment and Their Families, by Kris English. Allen and Bacon, 2002.
Counseling in Audiologic Practice, by John Greer Clark and Kristina English. Allen and Bacon, 2004.
The CARE Project: www.thecareproject.me
Johnnie Sexton: Johnnie.Sexton@thecareproject.me
Elizabeth Kubler Ross Foundation: http://www.ekrfoundation.org/eulogy.php