The Emotional and Psychosocial Effects of Aphasia: An Autoethnography

Abstract

ABSTRACTPeople with Aphasia, who have lost their ability to communicate fluently experience significant emotional and psychosocial effects of Aphasia, including fear, depression, and feelings of marginalization because they have lost their “voice”. They need nurses who understand the emotional and psychosocial effects of Aphasia, and who combine their clinical skills with an intentional focus on practicing the art of nursing to improve the quality of care for people with Aphasia. This research examines what it means to live with chronic Aphasia, a communication impairment that makes speech production and verbal output difficult after a traumatic brain injury (TBI). While stroke is the cause of the impairments, the primary focus of this research is on Aphasia and the toll it has on those living with Aphasia, a condition that affects speech but does NOT affect cognitive function. This study describes one nurse’s experience with acquired, sudden-onset Aphasia after a left-sided stroke that resulted in Broca’s Aphasia, making speech production and output difficult. It describes the effects of learning to live with the stroke’s aftermath, loss of independence, identity, and professional standing due to chronic Aphasia. Drawing on her personal experiences of living with Aphasia, this researcher conducted an autoethnography, analytically examining personal experiences, viewing it from a societal and cultural lens, using the framework of medical and social models of disability, and the art and practice of nursing care to explore the following research questions: Research questions were as follows: 1. How can the art of nursing practice, verbal and non-verbal, positively improve the Aphasia patient’s experience? 2. If caring is considered an integral part of the nurse’s role, what opportunity do nurses have to provide effective Aphasia care? In reviewing the research literature on aphasia patient experiences, the art and science of nursing care, medical model of disability, and social model of disability, in conjunction with the artifacts of her own life and experiences, the researcher sees correlations between themes of identity loss, social marginalization, isolation from mainstream others, inability to self-advocate, loss of voice, and the positive role that compassionate care and supportive structures can have on aphasic’s resilience and persistence. Implications from this study: In today’s technology and data-driven clinical care environment, nurses can play an important role in improving the quality of aphasic patients’ health care experiences by offering compassion, empathy, and ways to “listen” despite aphasics’ loss of voice. Nurses who practice science with art of care can better develop relationships with the patient and family, promote trust, actively listen, and observe, and understand patients’ and families’ experiences and concerns. Keywords: Aphasia, Broca’s Aphasia, sudden onset aphasia, disability, right sided hemiplegia, TBI, traumatic brain injury, stroke, communication impairment, autoethnography, art and science of nursing, identity loss, marginalization, loss of voice, speech language pathologists.