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Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support
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 Surgical Sciences, Education in Nursing.
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.
2015 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, 1569-1577 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: The purpose of this study was to describe relatives' experience of patient care and the support they themselves received during the course of disease progression.

METHOD: A total of 15 relatives were included from two neurology clinics in Sweden: 7 wives, 4 husbands, and 4 daughters. Data were collected through qualitative interviews 6 to 12 months after the patient had died. Content analysis was performed to analyze the interviews.

RESULT: The results showed that patient care was experienced as positive and as being based on the patient's needs and desires. Treatment from the staff, support and help, knowledge, availability, and continuity among the team were important reasons for the relations to feel secure. In addition, support for relatives was available, but different factors influenced its use. Most relatives did not think about their own needs but focused on the patient.

SIGNIFICANCE OF RESULTS: It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.

Place, publisher, year, edition, pages
2015. Vol. 13, no 6, 1569-1577 p.
Keyword [en]
Amyotrophic lateral sclerosis; Palliative care; Care; Support; Relatives
National Category
Nursing
Identifiers
URN: urn:nbn:se:uu:diva-256591DOI: 10.1017/S1478951515000188ISI: 000365665500008PubMedID: 25772516OAI: oai:DiVA.org:uu-256591DiVA: diva2:825903
Available from: 2015-06-24 Created: 2015-06-24 Last updated: 2017-12-04Bibliographically 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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Larsson, Birgitta JakobssonFröjd, CamillaNordin, KarinNygren, Ingela

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