Analysis of carers' narratives from 'Lost Voices from a Hidden Illness' in J. Health Psychol.

[Sasha]

Saw this on IiME FB:

http://www.ncbi.nlm.nih.gov/pubmed/26063209

J Health Psychol. 2015 Jun 10. pii: 1359105315587137. [Epub ahead of print]

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

Mihelicova M1, Siegel Z2, Evans M2, Brown A2, Jason L2.
Author information

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.

 

[Denise]

I would very much like to read this!

 

[Never Give Up]

It looks good, but not $33 good. I think I'll buy the book and do my own analysis.

 

[Sasha]

I would very much like to read this!

My bad - I didn't read this properly and thought they meant the film! I've edited my title.

It looks good, but not $33 good. I think I'll buy the book and do my own analysis.

It's available direct from Invest in ME. Here's some info about it:

http://www.investinme.org/LostVoicesBook/IiME Lost Voices Comments.htm

and the order page:

http://www.investinme.org/LostVoicesBook/Order.htm

 

[Bob]

My bad - I didn't read this properly and thought they meant the film! I've edited my title.

I got confused too. For clarification, 'Lost Voices' is a book (made in association with Invest in ME). And not related to this thread, but the reason we're getting confused, 'Voices from the Shadows' is a film (also made in association with Invest in ME). The book and film are related in some way but I can't remember how exactly. I think the book was made before the film, and was the inspiration or precursor for the film.

 

[Bob]

I've just noticed that they managed to get funding from the NIAID for this study. But I can't imagine that it was an expensive study or large outlay for the NIAID, so perhaps it's a case of the NIAID paying lip service to ME? Or is it a sign of things to come (he asks with tongue firmly planted in cheek)?

Funding Funding was provided by the National Institute of Allergy and Infectious Diseases (Grant number and AI105781) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (grant number HD072208).

http://m.hpq.sagepub.com/content/early/2015/06/09/1359105315587137

 

[Dolphin]

I just read this. It's a sympathetic review of what the carers/caregivers said. There's no blaming of patients or carers/caregivers. (This isn't surprising given it comes from Leonard Jason's team).

I haven't read the original book so can't make a comparison.