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Updated: Apr 10, 2026

Assessing the Coherence of Parents' Short Narratives Regarding their Child Using the Five-Minute Speech Sample Procedure
Published on: September 19, 2019
Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents'
Martina Mihelicova1, Zachary Siegel2, Meredyth Evans2
1DePaul University, USA mmiheli1@depaul.edu.
Abstract:
Experiences of parents who care for sons or daughters with severe myalgic encephalomyelitis are rarely discussed within the literature. Narratives of parent-carers in Lost Voices from a Hidden Illness were analyzed using interpretative phenomenological analysis. This study aimed to give voices to those who care for individuals with myalgic encephalomyelitis and are often stigmatized and inform future research supporting parent-carers. Results included themes of identity change, guilt, feeling like outsiders, uncertainty, changing perceptions of time, coping mechanisms, and improvement/symptom management. Findings could inform the development of carer-focused interventions and provide vital information to health professionals about parent-carers' lived experience.
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