Blog 3: Reflection

I have been thinking about what was for many years my default reaction to the all-too-common patient experience of working with healthcare systems that fell short of integrating my communication needs during an appointment or procedure.

Almost always, I would feel tense and aggravated, my reaction routinely rooted in the perception that I was placing demands on my providers for which they were not prepared.  Often, I felt that my provider had unintentionally relegated my hearing loss to the back burner of our appointment. Without a plan for how and to whom to communicate my needs effectively, I often felt at the mercy of the healthcare system, and I didn’t realize the untapped places where I could have control.

In this blog, we begin to talk about the process that will allow patients to discover their power and follow a path for pro-active, strategic advocacy through Wayfinding.  Our guidance is offered with the benefit of insights we have gained about pervasive barriers that exist within healthcare systems that so often get in the way of communication access for people with hearing loss.

Wayfinding Begins with Reflection

Building an effective advocacy plan begins with a process of self-reflection that can help you define your specific needs and evaluate your personal capacity for this work.  We encourage you to make time to reflect on the following questions:

1.  What are your expectations for healthcare encounters, keeping in mind that, in general, providers are not trained in the care of people with disabilities,

2.  Do you believe that your providers are familiar with the lived experience of having a hearing loss? To what degree do you think your providers understand the impact of your hearing loss on communication interactions during your health care?

3.  How can you accurately describe what it’s like for you when you are unable to understand what is being said during a procedure or appointment? Think about specific language that might accurately convey your experience.  For example,

·   “It’s a struggle for me to understand what’s being said and to feel confident that I’ve heard correctly.”

·   “I may catch individual words, but I feel anxious when I begin to lose the meaning of what’s been shared.”

·   “I worry that I’m not hearing important details accurately.”

4.  What might be the most effective way for you to invite your provider to collaborate with you around establishing accurate communication?  Think about the language you would use to extend such an invitation and how you would frame the benefits to both you and your provider.   For example,

·   “I would love for us to figure out a strategy that will help both of us to feel confident that we’re communicating accurately.” 

·   “I need your help with this. I want us to be able to fully understand each other to create the best health outcome.”

An essential component of Wayfinding, reflection can enable patients with hearing loss to prepare for the important work of forging alliances with healthcare providers around establishing communication solutions.

In our next post, I’ll share a difficult patient experience that demonstrates the potential of persistence and problem-solving at the heart of Wayfinding to repair communication breakdowns and clear a path to collaboration.

Peggy Ellertsen

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