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Experiences of onset and diagnosis of low-grade glioma from the patient's perspective
Örebro University, School of Health and Medical Sciences.
2006 (English)In: Cancer nursing, ISSN 0162-220X, Vol. 29, no 5, p. 415-422Article in journal (Refereed) Published
Abstract [en]

The aim of this study was to describe adult patients' experiences of falling ill and being diagnosed with low-grade glioma. Information concerning such experiences is lacking in the literature. The study population were adults identified within a well-defined population. Interviews were conducted with 27 patients. The interview texts were analyzed using inductive content analysis. Illness onset was described as a sequence of events. Nineteen patients narrated rapid onset and 8 patients prolonged onset. The most commonly described symptoms in both types of onset were headache, epileptic seizures, vomiting, and vision changes. Racing thoughts, depression, and tinnitus were 3 of the more uncommon symptoms. The most prominent negative experiences regarding healthcare included disrespectful encounters and a lack of opportunity for participation. The salient negative life-situation consequences included a lack of social support and attitudes expressing a lack of understanding. However, to some extent, positive experiences also emerged in the interviews concerning healthcare and life situation despite the onset of the illness. In conclusion, most of the patients in the study experienced the illness onset as stressful. Healthcare staff need particular knowledge to understand the vulnerability of the patient in the onset of low-grade glioma.

Place, publisher, year, edition, pages
2006. Vol. 29, no 5, p. 415-422
National Category
Social Sciences Interdisciplinary Nursing Social Work
Research subject
Nursing Science; Disability Research
Identifiers
URN: urn:nbn:se:oru:diva-2884PubMedID: 17006116OAI: oai:DiVA.org:oru-2884DiVA, id: diva2:135406
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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