Quality of life, Coping and need for Support during the ALS disease trajectory

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MARC

Jakobsson Larsson, Birgitta,1965-Uppsala universitet,Institutionen för neurovetenskap (author)

Quality of life, Coping and need for Support during the ALS disease trajectory

BookEnglish2016

Publisher, publication year, extent ...

Uppsala :Acta Universitatis Upsaliensis,2016
64 s.
electronicrdacarrier

Numbers

LIBRIS-ID:oai:DiVA.org:uu-283077
ISBN:9789155495756
https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-283077URI

Supplementary language notes

Language:English
Summary in:English

Part of subdatabase

SwePubSwePub

Classification

Subject category:vet swepub-contenttype
Subject category:dok swepub-publicationtype

Series

Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine,1651-6206 ;1224

Notes

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.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Neurologi hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Neurology hsv//eng
amyotrophic lateral sclerosis
quality of life
coping strategies
emotional well-being
relatives
care
support

Added entries (persons, corporate bodies, meetings, titles ...)

Nygren, Ingela,MD, PHDUppsala universitet,Institutionen för neurovetenskap (thesis advisor)
Nordin, Karin,ProfessorUppsala universitet,Institutionen för folkhälso- och vårdvetenskap (thesis advisor)
Strang, Peter,ProfessorKarolinska Institutet, Stockholm (opponent)
Uppsala universitetInstitutionen för neurovetenskap (creator_code:org_t)

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