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Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Neurology.
2016 (English)In: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 361, 235-242 p.Article in journal (Refereed) Published
Abstract [en]

To evaluate coping strategies among patients with Amyotrophic lateral sclerosis starting with diagnosis and during the disease progression, as well as investigate changes and correlations between coping strategies, emotional well-being and physical function. A total of 36 patients participated in the study. The patients filled out the Hospital Anxiety and Depression Scale and the Motor Neuron Disease Coping Scale. Physical function was measured using the revised ALS functional rating scale. Data were collected regularly from diagnosis and over a two years period. As a way to cope with the disease patients relied on both problem focused and emotional focused strategies. The use of coping strategies remained stable. Both physical disabilities and emotional well-being was related to some coping strategies, with some variation during the disease progression. Moreover, some coping strategies were related to symptoms of anxiety and depression. Irrespective of whether the coping strategies affect the emotional well-being or vice versa, the results show the importance of early and continuous evaluation of coping and emotional well-being to ease the emotional distress and provide support to the patient so that he/she can cope with the disease during the disease progression.

Place, publisher, year, edition, pages
2016. Vol. 361, 235-242 p.
National Category
Neurosciences
Identifiers
URN: urn:nbn:se:uu:diva-275272DOI: 10.1016/j.jns.2015.12.042ISI: 000370093400044PubMedID: 26810549OAI: oai:DiVA.org:uu-275272DiVA: diva2:899586
Available from: 2016-02-02 Created: 2016-02-02 Last updated: 2017-11-30Bibliographically approved
In thesis
1. Quality of life, Coping and need for Support during the ALS disease trajectory
Open this publication in new window or tab >>Quality of life, Coping and need for Support during the ALS disease trajectory
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to investigate quality of life, coping and emotional distress (i.e. anxiety and depression) among newly diagnosed ALS patients. An additional aim was also to investigate relatives’ experiences of the care for the patient and the support they received for themselves during the disease progression.

The most nominated areas of importance for the patient’s overall QoL were family, friends and own physical health. Most patients rated their QoL as good, which did not change at subsequent measurement, despite their physical function having changed for the worse during disease progression. Some patients had symptoms of clinical anxiety and depression during the first year after diagnosis. The total quality of life score did not correlate with physical function but with depression early on after diagnosis. Most patients used support and independence as strategies to cope with the disease during the first six months after diagnosis. There were few changes early on after the diagnosis, and the patients used several different strategies. The results show that the use of coping strategies remained stable over time. Both physical function and emotional distress correlated significant with different coping strategies, with some variation during the disease progression. Relatives experienced the care of their loved one as positive and based on the patient’s needs and desires. The treatment, knowledge, support and help from the staff were important for the relatives’ feeling of security. Different factors influence the use of support for themselves. The relatives did not think of their own needs, but their focus was rather on the patient.

The results of the thesis highlight the importance of providing support both to patients and their relatives during the disease progression. With early and regular evaluation on quality of life, coping and emotional well-being among the patients, the health professionals may be able to support the patients based on their specific needs, which probably will increase their quality of life.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2016. 64 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1224
Keyword
amyotrophic lateral sclerosis, quality of life, coping strategies, emotional well-being, relatives, care, support
National Category
Neurology
Identifiers
urn:nbn:se:uu:diva-283077 (URN)978-91-554-9575-6 (ISBN)
Public defence
2016-06-10, Grönvallssalen, Akademiska sjukhuset, ing 70, bv, Uppsala, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2016-05-20 Created: 2016-04-10 Last updated: 2016-06-15

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Jakobsson Larsson, BirgittaNordin, KarinNygren, Ingela

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