The notion of "invisibility" in people's experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis.

The notion of "invisibility" in people's experiences of the symptoms of multiple sclerosis: a... Purpose: Invisible symptoms have a negative impact on people living with Multiple Sclerosis (MS), related to the very notion that they are "unseen." It is important to understand the notion of "invisibility" in MS, as invisible symptoms are particularly distressing, and there is a paucity of research focussing on their invisible nature and its specific impact. We aimed to systematically identify, appraise and synthesise qualitative research regarding the notion of "invisibility" in relation to people's lived experience of symptoms of MS.Methods and materials: Articles meeting inclusion criteria were critically appraised and synthesised using a meta-ethnographic approach.Results: 17 articles were identified from six electronic databases. Three third-order themes were presented as a line of argument. "Invisibility" was conceptualised by people with MS as a discrepancy between the internal experience of symptoms and what is observed externally. "Invisibility" of MS symptoms was found to have numerous impacts, including not feeling understood or validated by others, issues around the perceived legitimacy of the illness, and living with needs which are hidden. We found that "invisibility" by its nature offers people a choice of strategies they use to navigate it. This choice introduces a dilemma: disclose the diagnosis to be "seen," or remain "invisible."Conclusions: This review revealed the manner in which people with MS are affected by the invisibility of their symptoms and the various adaptations used to navigate these lived experiences. We highlight the need to improve clinician and public understanding, and to better respond to these experiences. Future research focusing on the exploration of people's experiences of "invisibility" in MS, including the ways in which "invisibility" is managed on a day-to-day basis could raise clinical and public awareness of the impact of "invisibility" and how to provide support for this, thus easing the dilemmas faced by those with MS.IMPLICATIONS FOR REHABILITATIONPeople with Multiple Sclerosis (MS) experience symptoms that are not overtly visible to others, impacting their emotional and social wellbeing negatively.It is important for healthcare professionals to validate MS patients' experiences around "invisibility" and provide appropriate support.Healthcare professionals should address with MS patients any issues around disclosure of their diagnosis to those around them and support them to navigate these decisions.Raising awareness about the impact of "invisibility" for people with MS may help to lessen patient burden and promote understanding amongst healthcare professionals and the general public. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Disability and rehabilitation Pubmed

The notion of "invisibility" in people's experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis.

Disability and rehabilitation: 15 – Mar 25, 2020
Preview Only

The notion of "invisibility" in people's experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis.

Disability and rehabilitation: 15 – Mar 25, 2020

Abstract

Purpose: Invisible symptoms have a negative impact on people living with Multiple Sclerosis (MS), related to the very notion that they are "unseen." It is important to understand the notion of "invisibility" in MS, as invisible symptoms are particularly distressing, and there is a paucity of research focussing on their invisible nature and its specific impact. We aimed to systematically identify, appraise and synthesise qualitative research regarding the notion of "invisibility" in relation to people's lived experience of symptoms of MS.Methods and materials: Articles meeting inclusion criteria were critically appraised and synthesised using a meta-ethnographic approach.Results: 17 articles were identified from six electronic databases. Three third-order themes were presented as a line of argument. "Invisibility" was conceptualised by people with MS as a discrepancy between the internal experience of symptoms and what is observed externally. "Invisibility" of MS symptoms was found to have numerous impacts, including not feeling understood or validated by others, issues around the perceived legitimacy of the illness, and living with needs which are hidden. We found that "invisibility" by its nature offers people a choice of strategies they use to navigate it. This choice introduces a dilemma: disclose the diagnosis to be "seen," or remain "invisible."Conclusions: This review revealed the manner in which people with MS are affected by the invisibility of their symptoms and the various adaptations used to navigate these lived experiences. We highlight the need to improve clinician and public understanding, and to better respond to these experiences. Future research focusing on the exploration of people's experiences of "invisibility" in MS, including the ways in which "invisibility" is managed on a day-to-day basis could raise clinical and public awareness of the impact of "invisibility" and how to provide support for this, thus easing the dilemmas faced by those with MS.IMPLICATIONS FOR REHABILITATIONPeople with Multiple Sclerosis (MS) experience symptoms that are not overtly visible to others, impacting their emotional and social wellbeing negatively.It is important for healthcare professionals to validate MS patients' experiences around "invisibility" and provide appropriate support.Healthcare professionals should address with MS patients any issues around disclosure of their diagnosis to those around them and support them to navigate these decisions.Raising awareness about the impact of "invisibility" for people with MS may help to lessen patient burden and promote understanding amongst healthcare professionals and the general public.
Loading next page...
 
/lp/pubmed/the-notion-of-invisibility-in-people-s-experiences-of-the-symptoms-of-hF8GRdbgTO
DOI
10.1080/09638288.2020.1741698
pmid
32208036

Abstract

Purpose: Invisible symptoms have a negative impact on people living with Multiple Sclerosis (MS), related to the very notion that they are "unseen." It is important to understand the notion of "invisibility" in MS, as invisible symptoms are particularly distressing, and there is a paucity of research focussing on their invisible nature and its specific impact. We aimed to systematically identify, appraise and synthesise qualitative research regarding the notion of "invisibility" in relation to people's lived experience of symptoms of MS.Methods and materials: Articles meeting inclusion criteria were critically appraised and synthesised using a meta-ethnographic approach.Results: 17 articles were identified from six electronic databases. Three third-order themes were presented as a line of argument. "Invisibility" was conceptualised by people with MS as a discrepancy between the internal experience of symptoms and what is observed externally. "Invisibility" of MS symptoms was found to have numerous impacts, including not feeling understood or validated by others, issues around the perceived legitimacy of the illness, and living with needs which are hidden. We found that "invisibility" by its nature offers people a choice of strategies they use to navigate it. This choice introduces a dilemma: disclose the diagnosis to be "seen," or remain "invisible."Conclusions: This review revealed the manner in which people with MS are affected by the invisibility of their symptoms and the various adaptations used to navigate these lived experiences. We highlight the need to improve clinician and public understanding, and to better respond to these experiences. Future research focusing on the exploration of people's experiences of "invisibility" in MS, including the ways in which "invisibility" is managed on a day-to-day basis could raise clinical and public awareness of the impact of "invisibility" and how to provide support for this, thus easing the dilemmas faced by those with MS.IMPLICATIONS FOR REHABILITATIONPeople with Multiple Sclerosis (MS) experience symptoms that are not overtly visible to others, impacting their emotional and social wellbeing negatively.It is important for healthcare professionals to validate MS patients' experiences around "invisibility" and provide appropriate support.Healthcare professionals should address with MS patients any issues around disclosure of their diagnosis to those around them and support them to navigate these decisions.Raising awareness about the impact of "invisibility" for people with MS may help to lessen patient burden and promote understanding amongst healthcare professionals and the general public.

Journal

Disability and rehabilitationPubmed

Published: Mar 25, 2020

There are no references for this article.

Sorry, we don’t have permission to share this article on DeepDyve,
but here are related articles that you can start reading right now:

Explore the DeepDyve Library

Search

Query the DeepDyve database, plus search all of PubMed and Google Scholar seamlessly

Organize

Save any article or search result from DeepDyve, PubMed, and Google Scholar... all in one place.

Access

Get unlimited, online access to over 18 million full-text articles from more than 15,000 scientific journals.

Your journals are on DeepDyve

Read from thousands of the leading scholarly journals from SpringerNature, Wiley-Blackwell, Oxford University Press and more.

All the latest content is available, no embargo periods.

See the journals in your area

DeepDyve

Freelancer

DeepDyve

Pro

Price

FREE

$49/month
$360/year

Save searches from
Google Scholar,
PubMed

Create folders to
organize your research

Export folders, citations

Read DeepDyve articles

Abstract access only

Unlimited access to over
18 million full-text articles

Print

20 pages / month

PDF Discount

20% off