Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents' experiences

Martina Mihelicova*, Zachary Siegel, Meredyth Evans, Abigail Brown, Leonard Jason

*Corresponding author for this work

Research output: Contribution to journalArticle

4 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)2824-2837
Number of pages14
JournalJournal of Health Psychology
Volume21
Issue number12
DOIs
StatePublished - 2016

Keywords

  • carers
  • chronic illness
  • family
  • interpretative phenomenological analysis
  • meaning
  • myalgic encephalomyelitis
  • parents
  • qualitative methods

ASJC Scopus subject areas

  • Applied Psychology

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