A qualitative study of adult AAC users' experiences communicating with medical providers.

PURPOSE: To study the experiences of adults who use augmentative and alternative communication (AAC) systems and methods when interacting with medical providers, specifically primary care providers. METHOD: Individual face-to-face interviews were conducted with 12 participants, four of whom also participated in an online focus group. Diagnoses of the participants included cerebral palsy, undifferentiated developmental disability, head and neck cancer, amyotrophic lateral sclerosis and primary lateral sclerosis. Transcripts from the interviews and the focus group were analyzed to create a list of codes. From these codes themes that captured particular concepts discussed were identified. RESULTS: Participants described multiple frustrations in communicating with medical care providers. Themes that arose included: planning and preparing for the appointment, time barriers, inappropriate assumptions, relationship building and establishing rapport, medical decision making and implementing the plan. All but one participant reported bringing a caregiver with them to their appointments and this person, whether a family member, friend or paid aide, had a substantial role throughout the appointment. CONCLUSIONS: The participants' stories highlight important barriers they experience when communicating with medical providers. These barriers bring attention to the need for education for physicians, caregivers and patients with communication disabilities, along with increased research to improve patient-provider communication. IMPLICATIONS FOR REHABILITATION: Patients with communication disabilities face multiple barriers to communicating with medical care providers. Patients, caregivers, and medical care providers all play a role in effective and ineffective communication during appointments. Education for medical care providers, caregivers, and patients with communication disabilities, along with increased research is needed to improve patient-provider communication.