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- Schenell, Ramona, 1978, et al.
(author)
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Struggling for a Dignified Life: The Meaning of Self-Determination in Palliative Phase in Residential Care
- 2020
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In: International journal for human caring. - 1091-5710. ; 24:2, s. 147-157
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Journal article (peer-reviewed)abstract
- o understand the meaning of self-determination in residential care, as experienced by residents in the palliative phase, a hermeneutic approach was used to analyze 20 interviews. The results showed that lacking self-determination threatened the residents' experiences of living a dignified life. Bodily decline and dependency forced residents to adapt to new circumstances, making them experience changes in self-image, loneliness, a loss of influence over their lives, and a diminishing of their needs. To navigate this new situation, they strove to keep control over their lives, held on to their identities, and accepted help from trusted persons.
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| 2. |
- Fekete, Boglarka, et al.
(author)
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The Gothenburg population-based glioblastoma research database: Methodological aspects and potential impact
- 2019
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In: Neurology and Neurosurgery. - 2631-4339. ; 2
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Journal article (peer-reviewed)abstract
- Background: Glioblastoma Multiforme (GBM) is the most frequently encountered malignant primary brain tumour. Population-based studies of GBM are still scarce. The current paper describes the design of a prospective population-based multidisciplinary research effort on GBM. Objective: To address the impact of a wide range of clinical parameters in relation to clinical outcome and survival in a population-based cohort of patients with GBM. Further, we aim to examine the role of established and novel biomarkers in tumour tissue and blood in relation to response to treatment and clinical outcome. Methods: This is a single institution, population-based study with consecutive inclusion of patients based on a presumed diagnosis of GBM following radiological diagnostic work-up and discussion at a multidisciplinary tumour conference. Clinical parameters and treatment-related parameters at disease onset and during follow-up, and survival will be recorded. Health-related quality of life and emotional wellbeing for patients and their relatives will be assessed. Fresh-frozen and formalin-fixed paraffin-embedded (FFPE) tumour tissue is stored in an associated tissue biobank. Tissue micro-arrays are generated from representative areas of FFPE. Blood samples at admission for surgery and during follow-up are taken and stored frozen. Expected outcome: The study offers a multidisciplinary and translational approach to GBM research by linking a wide range of clinical parameters to biological parameters with high external validity. Thus, we expect to describe patterns of care and clinical course in a well-defined population-based cohort. Through a biomarker approach, we expect to 1) identify new biological subgroups of GBM, 2) explore and validate established and novel biomarkers for response to therapy, 3) estimate the proportion of patients suitable for targeted (“druggable”) therapy, and 4) explore and validate established and novel biomarkers for survival.
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| 3. |
- Kyte, Eli B., et al.
(author)
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Patients’ long-term perspectives on gains and losses after temporal lobe resection for epilepsy
- 2023
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In: Epilepsy and Behavior. - 1525-5050 .- 1525-5069. ; 147
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Journal article (peer-reviewed)abstract
- Objective: To investigate long-term (>10 years) experiences and overall satisfaction with temporal lobe resections (TLB) for epilepsy. Methods: Eligible participants were identified through the administrative epilepsy surgery registry at Oslo University Hospital. Data were collected through individual, semi-structured interviews with fifty participants. Interview records were analyzed using reflexive thematic analysis. Results: Participants’ answers were divided into two main themes: “looking back on surgery” and”considering gains and losses from surgery”. Most participants expressed satisfaction with having undergone surgery. Nevertheless, postsurgical problems had been encountered, and presurgical hopes had only partly been fulfilled. They described memory and naming problems with a major impact on daily life. Further, they had thoughts about effects on employment, independence, and feelings of loneliness, and expressed a need for more and better preoperative information. Conclusions: Presurgical hopes go beyond seizure freedom and memory and naming problems are experienced lasting many years after surgery in the temporal lobe. Better preoperative information, particularly about unwanted cognitive effects, is of prime importance. By exploring patientś presurgical hopes, a common ground for expectations on surgery may be found along with strategies on how to cope with cognitive difficulties and possible negative life changes.
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| 5. |
- Ozanne, Anneli, 1978, et al.
(author)
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Callosotomy in children - Parental experiences reported at long-term follow-up
- 2018
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In: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050 .- 1525-5069. ; 86, s. 91-97
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Journal article (peer-reviewed)abstract
- Callosotomy is a palliative surgery method for selected individuals with severe, drug-resistant epilepsy. The aim of this retrospective study was to explore parental experiences of the family's life situation before and long after their child had undergone callosotomy. Semistructured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis. Before surgery, parents felt that they lived in a chaotic bubble with an unbearable situation; their child had severe and frequent seizures and had to be looked after constantly. Most parents were both satisfied and dissatisfied with the given support and information. However, if the child did not improve after surgery, parents often felt that the information before surgery had not been adequate. After surgery, they found a glimpse of hope. They felt that the family got a new life; the reduced seizure severity led to a better life situation for the family. The support was described as both good and poor. The family life situation was complex, and even if they were partly satisfied with the support, it was still not enough. However, the life situation was also very stressful because of remaining seizures, behavioral problems, and sometimes, adverse effects of surgery. The families lived in disappointment and difficulty and had to fight for their rights. This indicates that these families need more information and social service coordination both before and long after surgery. They need not only tools to manage the child's disabilities but also substantial help to care for the child and to receive the social support they need. (C) 2018 Published by Elsevier Inc.
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| 6. |
- Ozanne, Anneli, 1978, et al.
(author)
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Parental experiences before and long-term after their children's hemispherotomy - A population-based qualitative study
- 2016
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In: Epilepsy & Behavior. - : Elsevier BV. - 1525-5050 .- 1525-5069. ; 60, s. 11-16
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Journal article (peer-reviewed)abstract
- Severe childhood epilepsy has an impact on the whole family. For selected children, hemispherotomy is the treatment of choice. The aim of this study was to explore parents' experiences before and after hemispherotomy as reported at a long-term follow-up and their view on received information and support. This was a population-based qualitative descriptive study, using qualitative content analysis of interviews. Seven to eighteen years after hemispherotomy, parents of twenty-one operated children were interviewed about the family life situation, expectations before surgery, and support and information before and after surgery. Before surgery, the theme 'Living in a chaotic bubble' illuminates how parents felt: the family lived in isolation, they felt both dissatisfaction and satisfaction about support and information, and they experienced that surgery was a question about life or death. After surgery, the theme 'Hovering between success and disaster' illuminates how parents hovered between happiness if the surgery was successful and sadness about e.g., complications and behavior problems. They experienced both excellent and poor support, in hospital and at rehabilitation. Regardless of all concerns, parents were satisfied that the child had received an operation. The hemispherotomies were successful and generated a better life situation. However, in order to cope, families need support and information throughout the whole process, from the onset of epilepsy and for a long time after surgery. If the child has behavior problems, an assessment should be made before surgery in order for the families to get adequate support. The specialist team needs to be involved as early as possible and follow the families for several years after surgery. Focus should be on the whole family, if needed including grandparents; family-centered care might be relevant for this patient group. (C) 2016 Elsevier Inc. All rights reserved.
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