Being Otherness: A Phenomenological Journey of Stroke Survivors' Stigma.

Abstract

Stroke rehabilitation profoundly impacts individuals' physical, emotional, and social identities, presenting significant challenges to self-perception, mental health, and quality of life. Social stigma, particularly internalized stigma, exacerbates these difficulties, influencing recovery and rehabilitation. Despite its critical implications, the experiences of internal stigma among stroke survivors remain underexplored, particularly within specific cultural contexts. This study aims to explore the lived experiences of stigma among stroke survivors in Indonesia, focusing on its impact on their self-identity, social interactions, and recovery process. A qualitative study employing hermeneutic phenomenology was conducted to explore the experiences of 12 stroke survivors. Participants were purposively sampled from a neurological rehabilitation center in Bali, Indonesia. Data were collected through semi-structured interviews conducted in Bahasa Indonesia, focusing on self-perception, social interactions, and recovery challenges. Thematic analysis was used to identify and interpret core themes, supported by rigorous methods to ensure credibility, dependability, and transferability. Four main themes emerged: (1) Journey of Self-Acceptance and Inner Struggles: Participants described challenges in accepting their altered identities, grappling with self-image, guilt, and the quest for purpose. Rediscovering usefulness emerged as a key coping mechanism. (2) Challenges in Social Connections and Communication: Survivors experienced shrinking social circles, communication difficulties, and feelings of devaluation, often leading to social isolation and emotional distress. (3) Navigating External Perceptions and Social Stigma: Participants reported discrimination, unfair treatment, and a lack of respect, contributing to feelings of alienation and diminished dignity. (4) Resilience and Support Systems in Recovery: Resilience, supported by strong relationships and rehabilitation efforts, played a crucial role in fostering recovery and finding new meaning in life. Internal stigma profoundly impacts stroke survivors' recovery journeys, shaping their emotional resilience, social interactions, and self-perception. Addressing stigma through targeted interventions, inclusive care models, and societal education can enhance survivors' quality of life and recovery outcomes. Future research should explore broader populations to generalize findings and develop tailored interventions to reduce stigma's negative impact.