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Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Livsstil och rehabilitering vid långvarig sjukdom.
Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Neurologi.
2016 (Engelska)Ingår i: Journal of the Neurological Sciences, ISSN 0022-510X, E-ISSN 1878-5883, Vol. 361, s. 235-242Artikel i tidskrift (Refereegranskat) 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.

Ort, förlag, år, upplaga, sidor
2016. Vol. 361, s. 235-242
Nationell ämneskategori
Neurovetenskaper
Identifikatorer
URN: urn:nbn:se:uu:diva-275272DOI: 10.1016/j.jns.2015.12.042ISI: 000370093400044PubMedID: 26810549OAI: oai:DiVA.org:uu-275272DiVA, id: diva2:899586
Tillgänglig från: 2016-02-02 Skapad: 2016-02-02 Senast uppdaterad: 2018-01-10Bibliografiskt granskad
Ingår i avhandling
1. Quality of life, Coping and need for Support during the ALS disease trajectory
Öppna denna publikation i ny flik eller fönster >>Quality of life, Coping and need for Support during the ALS disease trajectory
2016 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
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.

Ort, förlag, år, upplaga, sidor
Uppsala: Acta Universitatis Upsaliensis, 2016. s. 64
Serie
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1224
Nyckelord
amyotrophic lateral sclerosis, quality of life, coping strategies, emotional well-being, relatives, care, support
Nationell ämneskategori
Neurologi
Identifikatorer
urn:nbn:se:uu:diva-283077 (URN)978-91-554-9575-6 (ISBN)
Disputation
2016-06-10, Grönvallssalen, Akademiska sjukhuset, ing 70, bv, Uppsala, 13:00 (Svenska)
Opponent
Handledare
Tillgänglig från: 2016-05-20 Skapad: 2016-04-10 Senast uppdaterad: 2016-06-15

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Jakobsson Larsson, BirgittaNordin, KarinNygren, Ingela

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