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Subjective quality of life in persons with low-grade glioma and their next of kin
Örebro University, School of Health and Medical Sciences.
2009 (English)In: International Journal of Rehabilitation Research, ISSN 0342-5282, E-ISSN 1473-5660, Vol. 32, no 1, p. 64-70Article in journal (Refereed) Published
Abstract [en]

Patients with low-grade glioma have a longer survival than patients with highly malignant glioma, and for this reason questions of quality of life (QoL) are of particular importance to such patients as well as to their next of kin. No studies have been found in which both adult patients with low-grade glioma and their next of kin have estimated their own QoL. This study was therefore designed to investigate the subjective QoL of these two groups. Thirty-nine patients with low-grade glioma selected from a well-defined county population and 27 next of kin participated in the study. The questionnaire used in the study was the subjective estimation of QoL. The main results and conclusions are as follows: the variable absence of work/meaningful occupation showed statistically significant lower ratings among patients than among next of kin. The results show significant influence mainly on the patients' and their next of kin's internal psychological condition; related to background variables but the pattern in the results was inconsistent. There is a need for recurrent rehabilitation during this long-term disease, and a need to give vocational rehabilitation to support the patient's desire to have a meaningful occupation. It is also of importance to include the patient's next of kin when offering rehabilitation.

Place, publisher, year, edition, pages
Baltimore, Md.: Lippincott Williams & Wilkins, 2009. Vol. 32, no 1, p. 64-70
National Category
Social Sciences Interdisciplinary Nursing Social Work
Research subject
Nursing Science; Disability Science
Identifiers
URN: urn:nbn:se:oru:diva-2887DOI: 10.1097/MRR.0b013e32830bfa8cISI: 000264360000008PubMedID: 19648803Scopus ID: 2-s2.0-67650870170OAI: oai:DiVA.org:oru-2887DiVA, id: diva2:135409
Available from: 2008-02-08 Created: 2008-02-08 Last updated: 2018-01-13Bibliographically approved
In thesis
1. Consequences of brain tumours from the perspective of the patients and of their next of kin
Open this publication in new window or tab >>Consequences of brain tumours from the perspective of the patients and of their next of kin
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

A disease has consequences not only for the afflicted person but also for those who interact with him or her. A low-grade glioma is a brain tumour whose regarding its psychosocial implications for adult patients and their next of kin has received little attention in the literature. In the light of this the overall aim of the present thesis was to provide increased knowledge about how patients with low-grade glioma and their next of kin experience and deal with everyday life.

The methods of the studies were mainly qualitative. Thirty-nine patients and 28 next of kin were interviewed and all except one next of kin completed a quality of life questionnaire.

The onset of low-grade glioma was described from the patients’ perspective as a process, either rapid (up to a few months) or prolonged over several years. This phase of low-grade glioma encompassed repeated visits to physicians and care institutions. The onset of low-grade glioma was accompanied by stress, anxiety and uncertainty in the case of both the patients and those nearest. The symptoms and problems the patients experienced covered a broad range of consequences, physical, psychological and social. The patients presented a wide range of ways to cope with illness-related problems.

The next of kin were often deeply involved in the patients’ situation and many of them experienced extremely stressful emotions mainly in the early period of the illness. They had experience of positive encounters in health care but more often they had had a sense both of powerlessness and of being invisible and neglected. Relations and roles changed in ways that mostly were experienced as negative. Enabling strength in everyday life had to do with alleviation of strain and having a positive outlook upon life. By means of the questionnaire Subjective estimation of Quality of Life (SQoL) the patients and those nearest estimated their quality of life as being comparatively high. Only one variable, among the patients the absence of work/meaningful occupation and among the next of kin the absence of own children, being estimated at below 60% of the maximum score.

Place, publisher, year, edition, pages
Örebro: Örebro universitet, 2008. p. 84
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 25
Keywords
brain tumour, low-grade glioma, cancer, patient’s perspective, next of kin’s perspective, duration of disease onset, coping, subjective quality of life, content analysis
National Category
Social Work
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-1742 (URN)978-91-7668-572-3 (ISBN)
Public defence
2008-02-29, P2, Prismahuset, Örebro Universitet, Örebro, 13:00 (English)
Opponent
Supervisors
Available from: 2008-02-08 Created: 2008-02-08 Last updated: 2017-10-18Bibliographically approved

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Ahlström, Gerd I.

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