title: Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents' experiences.
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.
authors.affiliation: DePaul University, USA mmiheli1@depaul.edu.
authors.forename: Martina
authors.initials: M
authors.lastname: Mihelicova
authors.affiliation: DePaul University, USA.
authors.forename: Zachary
authors.initials: Z
authors.lastname: Siegel
authors.affiliation: DePaul University, USA.
authors.forename: Meredyth
authors.initials: M
authors.lastname: Evans
authors.affiliation: DePaul University, USA.
authors.forename: Abigail
authors.initials: A
authors.lastname: Brown
authors.affiliation: DePaul University, USA.
authors.forename: Leonard
authors.initials: L
authors.lastname: Jason
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D004644:Emotions; D004645:Empathy; D015673:Fatigue Syndrome, Chronic / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D033262:Narration; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D012720:Severity of Illness Index; D035501:Uncertainty; D055815:Young Adult
keywords: carers; chronic illness; family; interpretative phenomenological analysis; meaning; myalgic encephalomyelitis; parents; qualitative methods