Family Counseling and Support and Children with Hearing Loss: Interview with Johnnie Sexton, AuD
Douglas L. Beck, AuD, spoke with Dr. Sexton, executive director of the Care Project, about family counseling and support and the Care Project, a nonprofit organization dedicated to bringing hope to families who have children and/or adults with hearing challenges through counseling experiences aimed at the processing of the emotional stages of grief.
Academy: Good morning, Johnnie. Always a delight to speak with you!
Sexton: Hi, Doug. Thanks for your interest in the Care Project.
Academy: Entirely my pleasure! So then, let's start at the beginning…when did the Care Project start and what brought it about?
Sexton: We launched the Care Project just about four years ago. I had completed my doctorate and I was very interested to learn more about, and see what I could do to help improve family and parent counseling for people addressing the needs of children who are deaf and hard of hearing.
Academy: I know you've worked with Dr. David Luterman, and this is one of the focus areas of his work, too, working with, relating to, and helping guide the parents of Deaf/HOH children.
Sexton: Exactly. Interesting that you mention Dr. Luterman…I met with him a few weeks ago! But, yes, I wanted to see how I might could improve and expand adjustment counseling in regards to helping the families and parents of these children, as the parents often experience significant grief and other emotions surrounding the diagnosis, treatment and management of hearing loss as their child goes from screening to diagnosis, to amplification, education and more.
Academy: And as we both know, some of our colleagues might say, "This is very important work, but it sounds more like social work or psychology, and I don't have the time or training!"
Sexton: Well, yes. I'm glad you mentioned that because it is something we do deal with. Interestingly, the scope of practice (SOP) for audiology in every major national organization as well as the states' licensure indicates that "counseling" is absolutely part of our SOP. And so our role as counselors does exist and is part of our professional SOP and responsibility.
Academy: And if I might, I'd suggest that the Care Project's approach to counseling is a little bit different from the traditional "informational counseling" approach as the Care Project focuses on the family and the parents. Is that correct?
Sexton: Yes, that's correct and our primary focus as a profession has been on the child, and that makes total sense. But we need to incorporate adjustment counseling to address the needs of the family, the parents and/or the primary caregiver, as their journey will undoubtedly take unexpected twists and turns as they address the needs of their child who is deaf or hard of hearing.
Academy: And these issues always bring me back to the important point that some 95 percent of all children born deaf and hard of hearing have parents with normal hearing. As such, the parents didn't expect their child to be born deaf or hard of hearing, and they have very little knowledge as to what to do next!
Sexton: Exactly. The parents have to be respected and met at the place where they are. One can usually expect an emotional reaction, because the failed screening and/or the diagnosis is not what they expected to hear, and for many it can be a shocking mismatch with respect to their expectations—it's simply not what they expected to hear.
And, Doug, as you know from your work with Dr. Luterman, he says we need to attend to the screenings and diagnostics and fittings as soon as possible, but it's also important to not just provide a massive brain dump on the parents Again, we have to provide the information, but we also have to give them time to adjust, and time to digest the information, formulate their impressions and questions, give them time to grieve and allow them to ask questions with due respect to the timing needs of the parents.
Academy: Yes. I remember Dave saying that the provision of too much information, too soon, interrupts the bonding process (of the parent and child) and once that's been damaged, it's hard to get it back on track.
Sexton: Yes, that's right. I like to refer to this as the need for the professional to "Hit the Pause Button."
Academy: Johnnie, from your perspective, who are the "audiologist candidates" that should consider attending the Care Project workshops?
Sexton: The message the Care Project brings forward, more or less in the form of a sensitivity training tool kit, is beneficial for all audiologists. That is, whether you're dealing with babies and their parents, or dealing with seniors, there are emotional issues that present with hearing loss, and the better we understand and manage the emotional content, the better the result we can expect. And the issue of training and education for the audiologists and the staff and beyond, is so important to each patient—and that's the role we serve.
Academy: And, the Care Project has already worked with multiple private and state-based programs as well as multiple Early Hearing Detection & Intervention (EHDI) programs?
Sexton: Yes. We've established partnerships with multiple state wide agencies across many states, the EHDI programs, many different public school systems as well as schools for the Deaf, and we've established partnerships and done training at Boston's Children's Hospital, and we've got a new partnership hospital in Charlotte, North Carolina, and so the Care Project is growing at a very healthy rate.
Academy: And how does the actual training occur? That is, can one just go the Web site and download the materials?
Sexton: Well, not really. Audiologists can go the Web site to learn a lot about the nuts and bolts of the Care Project. However, we don't sell the materials online. We do have an amazing 16-minute free downloadable video online, and audiologists are welcome to visit the Web site and view that. However, to get the appropriate training, the commitment is usually a day long (6 to 8 hour) workshop with me. We review the information in-depth and interactively and we work one-on-one and in small groups, and the participants gain an amazing amount of knowledge through the workshops. After the workshop, I work with the group to provide an implementation plan based on their specific situation and client load. After the workshop training and development of an implementation plan, I am also available to return to an agency to mentor them through initiation of the plan.
Academy: And so the group or agency contacts you directly to arrange a training?
Sexton: Yes, that's the way we handle it. Sometimes we'll offer a local training workshop somewhere and the agency or group that's hosting us will invite or allow others from the other to participate, and that's always a welcome and efficient way of doing things!
Academy: And what is the best way for the audiologists to contact you?
Sexton: The best way to contact me is to simply send me an e-mail.
Academy: Okay, Johnnie, thanks so much for your time and energy. I've watched the development of the Care Project from the sidelines over the last few years, and it's been an amazing process and a joy to observe. I whole-heartedly endorse the training and skills offered by the Care Project and I wish you continued success!
Sexton: Thanks, Doug.
Johnnie Sexton, AuD, is the executive director of the Care Project.
Douglas L. Beck, AuD, Board Certified in Audiology, is the Web content editor with the American Academy of Audiology.