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

被引:23
作者
Parker, Le-Sharn [1 ]
Topcu, Gogem [1 ]
De Boos, Danielle [1 ]
das Nair, Roshan [1 ,2 ]
机构
[1] Univ Nottingham, Sch Med, Div Psychiat & Appl Psychol, Nottingham, England
[2] Univ Nottingham, Inst Mental Hlth, Nottinghamshire Healthcare Trust, Nottingham, England
关键词
Multiple sclerosis; meta-ethnography; meta-synthesis; invisible symptoms; invisibility; QUALITY-OF-LIFE; CHRONIC PAIN; FATIGUE; IMPACT; INDIVIDUALS; HEALTH; DYSFUNCTION; SEVERITY; BOWEL; WOMEN;
D O I
10.1080/09638288.2020.1741698
中图分类号
R49 [康复医学];
学科分类号
100215 ;
摘要
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.
引用
收藏
页码:3276 / 3290
页数:15
相关论文
共 50 条
[41]   Experiences of people with multiple sclerosis and clinicians in using cognitive behavioural therapies for hidden symptoms: a systematic review and meta-aggregation [J].
Gregory Feng ;
Stephanie Posa ;
Ashvene Sureshkumar ;
Sharon Simpson ;
Tania Bruno ;
Sarah A. Morrow ;
Sarah Donkers ;
Katherine Knox ;
Anthony Feinstein ;
Mark Bayley ;
Sarah Munce ;
Robert Simpson .
Journal of Neurology, 2024, 271 :1084-1107
[42]   Women's experiences of breastfeeding after a cesarean section: A meta-synthesis [J].
Ulfa, Yunefit ;
Maruyama, Naoko ;
Igarashi, Yumiko ;
Horiuchi, Shigeko .
JAPAN JOURNAL OF NURSING SCIENCE, 2023, 20 (03)
[43]   Men's experiences after prostatectomy: A meta-synthesis [J].
Kong, Eun-Hi ;
Deatrick, Janet A. ;
Bradway, Christine K. .
INTERNATIONAL JOURNAL OF NURSING STUDIES, 2017, 74 :162-171
[44]   Experiences of adjustment to secondary progressive multiple sclerosis: a meta-ethnographic systematic review [J].
Meek, Christopher ;
Topcu, Gogem ;
Moghaddam, Nima ;
das Nair, Roshan .
DISABILITY AND REHABILITATION, 2021, 43 (22) :3135-3146
[45]   Sleep disturbance and fatigue in multiple sclerosis: A systematic review and meta-analysis [J].
Bhattarai, Jagriti Jackie ;
Patel, Krina S. ;
Dunn, Katherine M. ;
Brown, Aeysha ;
Opelt, Brett ;
Hughes, Abbey J. .
MULTIPLE SCLEROSIS JOURNAL-EXPERIMENTAL TRANSLATIONAL AND CLINICAL, 2023, 9 (03)
[46]   A systematic review and meta-synthesis of the qualitative literature exploring the experiences and quality of life of survivors of a cardiac arrest [J].
Haydon, Gunilla ;
van der Riet, Pamela ;
Inder, Kerry .
EUROPEAN JOURNAL OF CARDIOVASCULAR NURSING, 2017, 16 (06) :475-483
[47]   Qualitative research into the symptom experiences of adult cancer patients after treatments: a systematic review and meta-synthesis [J].
Bennion, A. E. ;
Molassiotis, A. .
SUPPORTIVE CARE IN CANCER, 2013, 21 (01) :9-25
[48]   A Meta-Synthesis OF WOMEN'S Experiences OF CESAREAN BIRTH [J].
Puia, Denise .
MCN-THE AMERICAN JOURNAL OF MATERNAL-CHILD NURSING, 2013, 38 (01) :41-47
[49]   The Lived Experiences of Transgender Persons: A Meta-Synthesis [J].
Moolchaem, Pattaraporn ;
Liamputtong, Pranee ;
O'Halloran, Paul ;
Muhamad, Rosediani .
JOURNAL OF GAY & LESBIAN SOCIAL SERVICES, 2015, 27 (02) :143-171
[50]   The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis [J].
Eriksen, Siren ;
Bartlett, Ruth Louise ;
Grov, Ellen Karine ;
Ibsen, Tanja Louise ;
Telenius, Elisabeth Wiken ;
Rokstad, Anne Marie Mork .
DEMENTIA AND GERIATRIC COGNITIVE DISORDERS, 2021, 49 (05) :435-455