Sharing the load: Can we minimize the need to self-advocate for hearing loss consideration?

Both hearing loss and the experience of chronic illness become increasingly common across the lifespan. A major goal of palliative care and chronic illness management is to elicit care preferences, a process that should start early in the chronic illness trajectory. Hearing loss can disrupt this process, yet few data are available on the experience of older adults with hearing loss and a chronic illness within the healthcare system. This pilot study was designed to begin to address this gap in our understanding.

Using a qualitative, Constructivist, Grounded Theory framework, interviews were accomplished with fifteen older adults with hearing loss and chronic illness and with their partners.

A key overarching story that emerged from the data was A Necessary Routine: Hearing Loss Self-Advocacy. The driving forces promoting self-advocacy were never being asked but wanting to know while influencing contextual factors were the setting of a small office, concurrent concerns, and no accommodations. The negative impact of not having hearing loss considered included fear of missing information and misunderstandings.

Findings are discussed in the context of the demands imposed by the need to constantly self-advocate and how these findings underpin an argument for modifications in how hearing loss is managed within the health care system-modifications that will minimize the need for individuals to constantly self-advocate to have their hearing loss taken into consideration.