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Being the next of kin of a person with a low-grade glioma
Örebro University, School of Health and Medical Sciences.
2008 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 6, p. 584-591Article in journal (Refereed) Published
Abstract [en]

There is a paucity of knowledge for health-care professionals who come into contact with next of kin of persons diagnosed with low-grade gliomas. Therefore, the aim of this study was to explore the experience of being the next of kin of an adult person diagnosed with a low-grade glioma. Twenty-eight next of kin of persons with a low-grade glioma were interviewed. The data were subjected to qualitative content analysis. A quantitative data analysis was added to explore how the themes from the qualitative analysis occurred among different next of kin. Four main themes emerged: Extremely stressful emotions, Being invisible and neglected, Changed relations and roles, and Enabling strength in everyday life. The first of these occurred mainly in the early period of illness. This theme was especially predominant in the case of the patient's parents. The theme of Changed relations and roles occurred more often among next of kin some years after the person's diagnosis. The most statements occurred in all four themes were by female next of kin. Many next of kin requested emotional support for themselves and indicated that it is important that health-care staff should not forget them.

Place, publisher, year, edition, pages
2008. Vol. 17, no 6, p. 584-591
National Category
Medical and Health Sciences Cancer and Oncology Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-2886DOI: 10.1002/pon.1276ISI: 000257874100009OAI: oai:DiVA.org:oru-2886DiVA, id: diva2:135408
Note

Part of thesis: http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-1742

Available from: 2008-02-08 Created: 2008-02-08 Last updated: 2017-12-14Bibliographically 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
Keyword
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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Publisher's full texthttp://www3.interscience.wiley.com/cgi-bin/fulltext/116833671/PDFSTART

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Ahlström, Gerd

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