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'It becomes the new everyday life' - experiences of chronic pain in everyday life of people with limb-girdle muscular dystrophy.

Authors
  • Vrist, Louise T H1
  • Knudsen, Lone F2
  • Handberg, Charlotte1, 2
  • 1 Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark. , (Denmark)
  • 2 National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark. , (Denmark)
Type
Published Article
Journal
Disability and rehabilitation
Publication Date
Nov 01, 2023
Volume
45
Issue
23
Pages
3875–3882
Identifiers
DOI: 10.1080/09638288.2022.2142679
PMID: 36343207
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

To investigate experiences and reflections on challenges in everyday life of people living with limb-girdle muscular dystrophy (LGMD) and chronic pain in order to improve rehabilitation services. The design for this study was qualitative using the Interpretive Description methodology and the salutogenic theory of Sense of Coherence as the theoretical framework. Four semi-structured focus group interviews were conducted with 19 adults with LGMD from April to May 2021. The interviews were conducted online due to COVID-19. Living with chronic pain and LGMD affected everyday life in terms of the participants' overall Sense of Coherence. Beneficial or unfavorable coping strategies were identified within four interrelated categorical themes: pain management, normality comprehension, affected emotional sentiment and altered identity. Healthcare professionals should acknowledge possible chronic pain secondary to LGMD. Chronic pain appears to be a prevalent problem in people with LGMD with negative impact on everyday life, yet patients with LGMD did not receive sufficient information and necessary tools from health professionals to cope with chronic pain. Thus, adequate pain management appeared to be a difficult and self-taught process. Educating health professionals on how to support patients with LGMD and chronic pain is needed.IMPLICATIONS FOR REHABILITATIONHealth professionals should acknowledge and address the possibility of chronic pain secondary to limb-girdle muscular dystrophy (LGMD) and educate patients in pain management.Physiotherapy, energy management and engagement in meaningful activities may help patients gain some control of pain and limit the consequences of pain on everyday life.Supporting patients to accept pain and to shift focus towards their current capabilities may potentially improve pain management.Educating health professionals on how to support patients with LGMD and chronic pain is needed.

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