uu.seUppsala University Publications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Quality of life, Coping and need for Support during the ALS disease trajectory
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
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 [en]
amyotrophic lateral sclerosis, quality of life, coping strategies, emotional well-being, relatives, care, support
National Category
Neurology
Identifiers
URN: urn:nbn:se:uu:diva-283077ISBN: 978-91-554-9575-6 (print)OAI: oai:DiVA.org:uu-283077DiVA: diva2:919994
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
List of papers
1. Assessing quality of life and emotional well-being in newly diagnosed ALS patients- important for a good care and support.
Open this publication in new window or tab >>Assessing quality of life and emotional well-being in newly diagnosed ALS patients- important for a good care and support.
(English)Manuscript (preprint) (Other academic)
Keyword
ALS, emotional well-being, overall quality of life, physical function
National Category
Neurology
Research subject
Medical Science; Neurology
Identifiers
urn:nbn:se:uu:diva-282603 (URN)
Available from: 2016-04-11 Created: 2016-04-05 Last updated: 2016-06-15
2. Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis
Open this publication in new window or tab >>Coping strategies among patients with newly diagnosed amyotrophic lateral sclerosis
2014 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 23, no 21-22, 3148-3155 p.Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To prospectively identify different coping strategies among newly diagnosed amyotrophic lateral sclerosis patients and whether they change over time and to determine whether physical function, psychological well-being, age and gender correlated with the use of different coping strategies.

BACKGROUND: Amyotrophic lateral sclerosis is a fatal disease with impact on both physical function and psychological well-being. Different coping strategies are used to manage symptoms and disease progression, but knowledge about coping in newly diagnosed amyotrophic lateral sclerosis patients is scarce.

DESIGN: This was a prospective study with a longitudinal and descriptive design.

METHODS: A total of 33 patients were included and evaluation was made at two time points, one to three months and six months after diagnosis. Patients were asked to complete the Motor Neuron Disease Coping Scale and the Hospital Anxiety and Depression Scale. Physical function was estimated using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale.

RESULTS: The most commonly used strategies were support and independence. Avoidance/venting and information seeking were seldom used at both time points. The use of information seeking decreased between the two time points. Men did not differ from women, but patients ≤64 years used positive action more often than older patients. Amyotrophic Lateral Sclerosis Functional Rating Scale was positively correlated with positive action at time point 1, but not at time point 2. Patients' psychological well-being was correlated with the use of different coping strategies.

CONCLUSIONS: Support and independence were the most used coping strategies, and the use of different strategies changed over time. Psychological well-being was correlated with different coping strategies in newly diagnosed amyotrophic lateral sclerosis patients.

RELEVANCE TO CLINICAL PRACTICE: The knowledge about coping strategies in early stage of the disease may help the nurses to improve and develop the care and support for these patients.

National Category
Neurology
Identifiers
urn:nbn:se:uu:diva-219767 (URN)10.1111/jocn.12557 (DOI)000343835300016 ()24476534 (PubMedID)
Available from: 2014-03-11 Created: 2014-03-05 Last updated: 2017-12-05Bibliographically approved
3. Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression
Open this publication in new window or tab >>Coping with amyotrophic lateral sclerosis; from diagnosis and during disease progression
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.

National Category
Neurosciences
Identifiers
urn:nbn:se:uu:diva-275272 (URN)10.1016/j.jns.2015.12.042 (DOI)000370093400044 ()26810549 (PubMedID)
Available from: 2016-02-02 Created: 2016-02-02 Last updated: 2017-11-30Bibliographically approved
4. Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support
Open this publication in new window or tab >>Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support
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.

Keyword
Amyotrophic lateral sclerosis; Palliative care; Care; Support; Relatives
National Category
Nursing
Identifiers
urn:nbn:se:uu:diva-256591 (URN)10.1017/S1478951515000188 (DOI)000365665500008 ()25772516 (PubMedID)
Available from: 2015-06-24 Created: 2015-06-24 Last updated: 2017-12-04Bibliographically approved

Open Access in DiVA

fulltext(872 kB)346 downloads
File information
File name FULLTEXT01.pdfFile size 872 kBChecksum SHA-512
14754b608e64772d3fb09630c73e1ac670fd78d4e265c3c02edc78c9c1b24cb1c8779e910514bfebfee5d2ed70d40b69f72eb2ef3c15e47e7b95e60fa2837291
Type fulltextMimetype application/pdf
Buy this publication >>

Authority records BETA

Jakobsson Larsson, Birgitta

Search in DiVA

By author/editor
Jakobsson Larsson, Birgitta
By organisation
Department of Neuroscience
Neurology

Search outside of DiVA

GoogleGoogle Scholar
Total: 346 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

isbn
urn-nbn

Altmetric score

isbn
urn-nbn
Total: 1079 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf