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Consequences of brain tumours from the perspective of the patients and of their next of kin
Örebro University, School of Health and Medical Sciences.
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. , 84 p.
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 25
Keyword [en]
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: urn:nbn:se:oru:diva-1742ISBN: 978-91-7668-572-3 (print)OAI: oai:DiVA.org:oru-1742DiVA: diva2:135410
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: 2011-05-17Bibliographically approved
List of papers
1. Experiences of onset and diagnosis of low-grade glioma from the patient's perspective
Open this publication in new window or tab >>Experiences of onset and diagnosis of low-grade glioma from the patient's perspective
2006 (English)In: Cancer nursing, ISSN 0162-220X, Vol. 29, no 5, 415-422 p.Article 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.

National Category
Social Sciences Interdisciplinary Nursing Social Work
Research subject
Nursing Science; Disability Research
Identifiers
urn:nbn:se:oru:diva-2884 (URN)17006116 (PubMedID)
Available from: 2008-02-08 Created: 2008-02-08 Last updated: 2011-05-17Bibliographically approved
2. Illness-related problems and coping among persons with low-grade glioma
Open this publication in new window or tab >>Illness-related problems and coping among persons with low-grade glioma
2005 (English)In: Psycho-Oncology, ISSN 1057-9249, Vol. 14, no 9, 728-737 p.Article 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.

National Category
Social Sciences Interdisciplinary Nursing Social Work
Research subject
Nursing Science; Disability Research
Identifiers
urn:nbn:se:oru:diva-2885 (URN)10.1002/pon.898 (DOI)
Available from: 2008-02-08 Created: 2008-02-08 Last updated: 2011-05-17Bibliographically approved
3. Being the next of kin of a person with a low-grade glioma
Open this publication in new window or tab >>Being the next of kin of a person with a low-grade glioma
2008 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 17, no 6, 584-591 p.Article 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.

National Category
Medical and Health Sciences Cancer and Oncology Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-2886 (URN)10.1002/pon.1276 (DOI)000257874100009 ()
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: 2017-03-27Bibliographically approved
4. Subjective quality of life in persons with low-grade glioma and their next of kin
Open this publication in new window or tab >>Subjective quality of life in persons with low-grade glioma and their next of kin
2009 (English)In: International Journal of Rehabilitation Research, ISSN 0342-5282, E-ISSN 1473-5660, Vol. 32, no 1, 64-70 p.Article 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
National Category
Social Sciences Interdisciplinary Nursing Social Work
Research subject
Nursing Science; Disability Science
Identifiers
urn:nbn:se:oru:diva-2887 (URN)10.1097/MRR.0b013e32830bfa8c (DOI)000264360000008 ()19648803 (PubMedID)2-s2.0-67650870170 (Scopus ID)
Available from: 2008-02-08 Created: 2008-02-08 Last updated: 2017-03-13Bibliographically approved

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