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Illness-related problems and coping among persons with low-grade glioma
Örebro University, School of Health and Medical Sciences.
2005 (English)In: Psycho-Oncology, ISSN 1057-9249, Vol. 14, no 9, p. 728-737Article in journal (Refereed) Published
Abstract [en]

The literature reveals no qualitative study concerning the consequences of low-grade glioma in adults. The aim of the present study was to describe perceived illness-related problems in persons with low-grade glioma and the coping used in everyday living. The study was cross-sectional within a well-defined population. A semi-structured qualitative interview was conducted with each of 39 persons, and the data were subjected to inductive content analysis. There was a wide range of perceived problems, mainly concerning bodily functions, memory, cognition, emotion, communication and perception. Several coping strategies emerged, the most frequent being searching for a solution, which was often related to memory and communication problems. One characteristic of communication was the creation of new words. Other common strategies were refraining from and avoiding and laughing and joking. Caring about self involved prioritizing of personal needs. A striving to feel a sense of solidarity within seeking social affinity was coping with a novel content. The study provides vivid narratives about previously unreported phenomena, conveying a deeper understanding. The variety and endurance of problems revealed verifies the need of support from several professionals, including in the form of out-patient post-medical care.

Place, publisher, year, edition, pages
2005. Vol. 14, no 9, p. 728-737
National Category
Social Sciences Interdisciplinary Nursing Social Work
Research subject
Nursing Science; Disability Research
Identifiers
URN: urn:nbn:se:oru:diva-2885DOI: 10.1002/pon.898OAI: oai:DiVA.org:oru-2885DiVA, id: diva2:135407
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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