Tag: caregivers

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.

Source: Mihelicova M, Siegel Z, Evans M, Brown A, Jason L. Caring for people with severe myalgic encephalomyelitis: An interpretative phenomenological analysis of parents’ experiences. J Health Psychol. 2016 Dec;21(12):2824-2837. Epub 2015 Jun 10. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675701/ (Full article)

Patient power and control: a study of women with uncertain illness trajectories

Abstract:

The authors interviewed 12 women diagnosed with chronic fatigue syndrome and 13 with fibromyalgia with the aim of determining the strategies they perceive themselves as using to gain control over their situation during the health care process. The results highlight various strategies that the women report applying to find a way of managing the illness and to influence caregivers. They describe, for example, how they try to gain control over their situation by acquiring knowledge about the illness. The women also describe various power strategies they use in their interaction with the caregivers to take command of their situation, namely exiting, noncompliance, confrontation, persuasion/insistence, making demands, and demonstrative distancing.

 

Source: Asbring P, Närvänen AL. Patient power and control: a study of women with uncertain illness trajectories. Qual Health Res. 2004 Feb;14(2):226-40. http://www.ncbi.nlm.nih.gov/pubmed/14768459