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The multiple faces of pain in motor neuron disease: a qualitative study to inform pain assessment and pain management
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience. (Fysioterapi)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience. (Neurologi)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience. (Fysioterapi)
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience. (Fysioterapi)ORCID iD: 0000-0002-7999-6087
(English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal (Refereed) Accepted
National Category
Health Sciences
Research subject
Physiotherapy
Identifiers
URN: urn:nbn:se:uu:diva-372239OAI: oai:DiVA.org:uu-372239DiVA, id: diva2:1275547
Available from: 2019-01-07 Created: 2019-01-07 Last updated: 2019-10-29
In thesis
1. Experiences of pain and associations between pain, disease severity and individual quality of life in people with motor neuron diseases
Open this publication in new window or tab >>Experiences of pain and associations between pain, disease severity and individual quality of life in people with motor neuron diseases
2019 (English)Licentiate thesis, comprehensive summary (Other academic)
Abstract [en]

Many people with the incurable and often times fatal motor neuron diseases have pain, but there is lack of knowledge about people’s experiences of living with pain. Further, the correlation between pain and their quality of life is not well understood, and previous studies have not used individual quality of life, namely that people with their own words express what quality of life is.   The aim of these studies was to explore the experiences of pain and the association between pain and quality of life in people with MND.

Methods: Study I was explorative about the individual experience of pain, while study II was correlational between pain, pain severity, disease severity and IQOL. Study I was qualitative, whereas study II used both qualitative and quantitative analysis.

Results and conclusions: People with motor neuron diseases experienced pain to have multiple characteristics and impact. However, the results emphasise that the individual experienced some pain characteristics as difficult and that pain could worsen functions that were already affected by the disease. The experience was also that it could be challenging to manage pain. However, the symptom of pain could pass unnoticed in contacts with healthcare professionals (study I). The three most important areas for individual quality of life in both participants with and without pain were: Social relations, followed by Activities for amusement and relaxations, and Being in the outdoor environment. Individual quality of life was noticed to be good regardless of pain. Pain and pain severity were not found to be associated with satisfaction of individual quality of life in patients with motor neuron diseases, neither was disease severity. The results support previous findings, that strong associations between symptoms of MND and IQoL are not obvious. However, this does not infer that pain in people with MNDs should be neglected and undertreated. On the contrary, it seems to be important for healthcare to pay more attention to pain in people with motor neuron diseases and that pain continuously is measured, individually treated and followed. Regardless of whether persons with MND have pain or not, the results point to the importance of healthcare professionals providing support to not only the patient but also the patient’s family and friends, as well as assisting in various forms of relaxing activities and possibility of being in the outdoor environment.

Place, publisher, year, edition, pages
Uppsala: , 2019. p. 48
Keywords
Amyotrophic lateral sclerosis, motor neuron disease, pain, quality of life, individual quality of life, qualitative content analysis, pain severity, disease severity
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-396033 (URN)
Presentation
2019-12-05, C4:301, BMC, Husargatan 3, Uppsala, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2019-11-12 Created: 2019-10-29 Last updated: 2019-11-12Bibliographically approved

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