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  • 1
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    Online Resource
    Evaluation of a multimodal rehabilitative palliative care programme for patients with high‐grade glioma and their family caregivers
    Wiley ; 2022
    In:  Scandinavian Journal of Caring Sciences Vol. 36, No. 3 ( 2022-09), p. 815-829
    Details
    In: Scandinavian Journal of Caring Sciences, Wiley, Vol. 36, No. 3 ( 2022-09), p. 815-829
    Abstract: Patients diagnosed with high‐grade glioma and their family caregivers often experience intense disease and treatment trajectories. Fluctuations in patient's symptoms lead to enormous burdens for caregivers and the risk of developing symptoms of stress, anxiety, and depression. Aim The study aim is to explore patient and caregiver experiences and evaluate the relevance of and satisfaction with a multimodal rehabilitative palliative care programme for patients diagnosed with a high‐grade glioma and their family caregivers. Methods In a longitudinal multi‐methods study, adult patients with high‐grade glioma ( n  = 17) and their family caregivers ( n  = 16) completed a 4‐day residential programme and a 2‐day follow‐up programme 3 months later. Participants completed questionnaires after each programme, scoring relevance and satisfaction on a 5‐point Likert scale. Qualitative data were collected during four evaluation group interviews with patients and caregivers. Results The mean overall satisfaction score was 4.80 (standard deviation [SD], 0.55) for the initial 4‐day programme and 4.28 (SD, 0.83) for the follow‐up programme. Three themes emerged in the evaluation group interviews: (1) meeting peers strengthens social well‐being, (2) the value of information and focusing on individual needs, and (3) accepting life as an unpredictable passage. Conclusion Participants found completing the REHPA‐HGG programme feasible and rated all sessions highly for relevance and satisfaction. Qualitative findings confirm the value of individualised information, acceptance, and peer interactions. Implication for practice A multimodal rehabilitative palliative care programme addressed unmet patient and caregiver needs. Peer‐to‐peer interventions for family caregivers may address individual support needs. Similar programmes may maximise benefit by avoiding planned behaviour changes and enhancing palliative approaches.
    Type of Medium: Online Resource
    ISSN: 0283-9318 , 1471-6712
    URL: Issue
    URL: Article
    DOI: 10.1111/scs.v36.3
    DOI: 10.1111/scs.13019
    Language: English
    Publisher: Wiley
    Publication Date: 2022
    detail.hit.zdb_id: 2031090-0
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  • 2
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    Long-term postoperative health-related quality of life in patients with subfrontal meningiomas
    Journal of Neurosurgery Publishing Group (JNSPG) ; 2022
    In:  Journal of Neurosurgery ( 2022-11-01), p. 1-10
    Details
    In: Journal of Neurosurgery, Journal of Neurosurgery Publishing Group (JNSPG), ( 2022-11-01), p. 1-10
    Abstract: Subfrontal meningiomas grow insidiously in areas with high cerebral compliance and a relative scarcity of eloquent function. Symptoms develop progressively, are nonspecific, and include anosmia, changes in personality and cognition, depressive symptoms, headaches, visual disturbances, and seizures. Patients with subfrontal meningiomas carry the highest risk of developing psychological symptoms, which makes patient-reported outcome in terms of long-term health-related quality of life (HRQOL), anxiety, and depression of particular importance. This observational study aimed to investigate long-term HRQOL, anxiety, and depression in patients with subfrontal meningiomas who underwent a bifrontal craniotomy (subfrontal) approach between 2008 and 2017 at a single tertiary center. Correlations between preoperative, perioperative, and postoperative factors and HRQOL, anxiety, and depression were analyzed to detect prognostic factors. METHODS Seventy-seven consecutive patients who underwent operations at Rigshospitalet, Copenhagen, Denmark, between 2008 and 2017 were retrospectively analyzed. Patients were prospectively invited to respond to the Functional Assessment of Cancer Therapy–General, Functional Assessment of Cancer Therapy–Brain, and Hospital Anxiety and Depression Scale. Information regarding preoperative, perioperative, and postoperative factors were collected from the patients’ medical records and scans. RESULTS Patients with subfrontal meningiomas exhibited better HRQOL and lower levels of anxiety and depression than general populations and other meningioma and glioblastoma cohorts. The only statistically significant prognostic factors for long-term HRQOL were number of symptoms at diagnosis and whether patients were discharged home or to a local hospital postoperatively. Tumor and peritumoral brain edema volumes were not prognostic factors. CONCLUSIONS Patients with subfrontal meningiomas exhibited better long-term postoperative HRQOL and were less likely to have anxiety or depression than the reference populations. This information on long-term prognosis is very valuable for patients, next of kin, and neurosurgeons and has not been previously studied in detail.
    Type of Medium: Online Resource
    ISSN: 0022-3085 , 1933-0693
    URL: Article
    DOI: 10.3171/2022.9.JNS22826
    RVK:
    XA 10000
    RVK:
    XA 55270
    Language: Unknown
    Publisher: Journal of Neurosurgery Publishing Group (JNSPG)
    Publication Date: 2022
    detail.hit.zdb_id: 2026156-1
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  • 3
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    Symptom Patterns in Young Adults with Cancer: An App-Based Study
    Elsevier BV ; 2023
    In:  Seminars in Oncology Nursing ( 2023-7), p. 151476-
    Details
    In: Seminars in Oncology Nursing, Elsevier BV, ( 2023-7), p. 151476-
    Type of Medium: Online Resource
    ISSN: 0749-2081
    URL: Article
    DOI: 10.1016/j.soncn.2023.151476
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2023
    detail.hit.zdb_id: 2142427-5
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  • 4
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    Neuro-Oncological Symptoms: A Longitudinal Quantitative Study of Family Function, Perceived Support, and Caregiver Burden
    SAGE Publications ; 2022
    In:  Journal of Family Nursing Vol. 28, No. 1 ( 2022-02), p. 43-56
    Details
    In: Journal of Family Nursing, SAGE Publications, Vol. 28, No. 1 ( 2022-02), p. 43-56
    Abstract: The aim of this study was to establish preliminary quantitative evidence for the longitudinal change in family function, perceived support, and caregiver burden, acknowledging that physical and emotional symptoms are important variables for quality of life in families affected by a brain cancer diagnosis. This longitudinal quantitative study measured patient-reported and family member–reported outcomes at four different time points in 1 year. The patients reported that the symptom burden hindered their relationships with other people. Furthermore, the generally high level of strain due to the caregiver burden had an especially negative impact on close social relationships. Data indicate that family functioning was continually negatively affected as perceived by both patients and family caregivers. No significant changes over time were identified. The results underline the importance of providing systematic and ongoing support to the whole family that acknowledges their contribution as a valuable social support system for the individual experiencing high-grade glioma.
    Type of Medium: Online Resource
    ISSN: 1074-8407 , 1552-549X
    URL: Article
    DOI: 10.1177/10748407211029986
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2022
    detail.hit.zdb_id: 2070209-7
    SSG: 5,3
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  • 5
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    Electronic Games for Facilitating Social Interaction Between Parents With Cancer and Their Children During Hospitalization: Interdisciplinary Game Development
    JMIR Publications Inc. ; 2021
    In:  JMIR Serious Games Vol. 9, No. 1 ( 2021-1-21), p. e16029-
    Details
    In: JMIR Serious Games, JMIR Publications Inc., Vol. 9, No. 1 ( 2021-1-21), p. e16029-
    Abstract: Most cancer treatments today take place in outpatient clinics; however, it might be necessary for some patients to be admitted to hospital departments due to severe side effects or complications. In such situations, support from family and social relations can be crucial for the patients’ emotional well-being. Many young adolescents and children whose parents have cancer describe how they are not seen, heard, or listened to as the worried relatives they are. Within the intensive care unit, it has been recommended that early supportive interventions are tailored to include children of the intensive care patient; a similar approach might be relevant in the oncological setting. To our knowledge, no studies have explored how to involve young relatives who are visiting their parent at an oncological department. Recently, a framework for developing theory-driven, evidence-based serious games for health has been suggested. Such a process would include stakeholders from various disciplines, who only work toward one specific solution. However, it is possible that bringing together different disciplines, such as design, art, and health care, would allow a broader perspective, resulting in improved solutions. Objective This study aims to develop tools to enhance the social interaction between a parent with cancer and their child when the child visits the parent in the hospital. Methods In total, 4 groups of design students within the Visual Design program were tasked with developing games addressing the objective of strengthening relations in situ during treatment. To support their work, the applied methods included professional lectures, user studies, and visual communication (phase I); interviews with the relevant clinicians at the hospital (phase II), co-creative workshops with feedback (phase III), and evaluation sessions with selected populations (phase IV). The activities in the 4 phases were predefined. This modified user design had the child (aged 4-18 years) of a parent with cancer as its primary user. Results Overall, 4 different games were designed based on the same information. All games had the ability to make adults with cancer and their children interact on a common electronic platform with a joint goal. However, the interaction, theme, and graphical expression differed between the games, suggesting that this is a wide and fertile field to explore. Conclusions Playing a game can be an efficient way to create social interaction between a parent with cancer and a child or an adolescent, potentially improving the difficult social and psychological relations between them. The study showed that the development of serious games can be highly dependent on the designers involved and the processes used. This must be considered when a hospital aims to develop multiple games for different purposes.
    Type of Medium: Online Resource
    ISSN: 2291-9279
    URL: Article
    DOI: 10.2196/16029
    Language: English
    Publisher: JMIR Publications Inc.
    Publication Date: 2021
    detail.hit.zdb_id: 2798265-8
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  • 6
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    Bereaved caregivers of patients with high-grade glioma: a systematic review
    BMJ ; 2019
    In:  BMJ Supportive & Palliative Care Vol. 9, No. 1 ( 2019-03), p. 26-33
    Details
    In: BMJ Supportive & Palliative Care, BMJ, Vol. 9, No. 1 ( 2019-03), p. 26-33
    Abstract: Caregivers to patients with primary malignant brain tumours neglect their own physical and emotional needs during the disease trajectory. The aim of the systematic review was to explore how informal caregivers of patients with primary malignant brain tumour (high-grade glioma (HGG)) experience and manage their life situation after the death of the patient. Methods A systematic literature search was carried out in December 2016 and revised in September 2017. The following six databases were searched: PubMed, Cumulative Index of Nursing and Allied Health Literature, Excerpta Medica database, Scopus, PsycINFO and The Social Sciences Citation Index. Studies eligible for inclusion met the following criteria: (1) included bereaved caregivers to patients diagnosed with HGG ≥18 years, (2) described the caregiver’s perspective at post bereavement (3) had been peer-reviewed. The papers included were assessed for methodological quality using the Critical Appraisal Skills Programme. Results Four qualitative articles, published from 2004 to 2015, met the eligibility criteria. Bereaved informal caregivers expressed profound grief and had unmet needs and questions related to the disease and their role as caregiver. Moreover, they experienced depressive symptoms and fatigue, resulting in a reduced work capability and social network. Conclusions We conclude that bereaved informal caregivers experience psychosocial consequences and emotional reactions after bereavement, resulting in feelings of isolation and loneliness. This review identified limited evidence on how the bereaved caregivers prefer to be supported, and further study is warranted. We suggest incorporating systematic information on bereavement in clinical practice and a cooperation across sectors.
    Type of Medium: Online Resource
    ISSN: 2045-435X , 2045-4368
    URL: Article
    DOI: 10.1136/bmjspcare-2017-001386
    Language: English
    Publisher: BMJ
    Publication Date: 2019
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  • 7
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    Health-related quality of life and caregiver perspectives in glioblastoma survivors: a mixed-methods study
    BMJ ; 2022
    In:  BMJ Supportive & Palliative Care Vol. 12, No. e6 ( 2022-12), p. e846-e854
    Details
    In: BMJ Supportive & Palliative Care, BMJ, Vol. 12, No. e6 ( 2022-12), p. e846-e854
    Abstract: The purpose of antineoplastic treatment of high-grade glioma (HGG) is to achieve progression-free survival with delayed neurological and cognitive deterioration. Health-related quality of life (HRQOL) has become increasingly important next to more traditional outcome measures such as progression-free survival. However, the clinical outcome of long-term, HGG survivors and their caregivers’ quality of life is poorly understood. Objective This study aims to address HRQOL and perspectives on the daily life experiences of long-term survivors (LTS) with HGG and their caregivers. Methods This mixed-methods study applies a convergent design using identical sampling. Separate telephone interviews with patients diagnosed for more than 3 years and their caregivers were conducted. Patients filled out self-reported questionnaires; the Hospital Anxiety and Depression Scale, the Functional Assessment of Cancer Therapy (FACT), General and Brain (FACT-Br), and the Leisure Time Physical Activity Questionnaire. Results Three themes shared by patients and their caregivers were identified: searching for meaningful activities, selecting information that enhances self-management strategies and protection for safety reasons. Ten per cent showed moderate depressive symptoms, which is lower compared with the newly diagnosed. The HRQOL scores seem to be rated higher than the normative sample. The FACT-Br total score indicated that a previously identified significant increase in the emotional well-being of 1-year survivors was the same or improved. A central finding is that the LTS expressed frustration and sadness due to their reduced ability to manage work and daily life activities. Caregivers are challenged throughout the entire trajectory, and patient safety issues are a key concern for them. Conclusions The LTS desire participation in satisfying, meaningful activities that consider their cognitive and physical capacities. Advance care planning must be a key component in future research, as discussing life strategies can enhance positive beliefs, which are apparently imperative to their well-being. Trial registration number Clinical Trial.gov: NCT02965144
    Type of Medium: Online Resource
    ISSN: 2045-435X , 2045-4368
    URL: Article
    DOI: 10.1136/bmjspcare-2019-001777
    Language: English
    Publisher: BMJ
    Publication Date: 2022
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  • 8
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    Current trends in patient and public involvement in cancer research: A systematic review
    Wiley ; 2019
    In:  Health Expectations Vol. 22, No. 1 ( 2019-02), p. 3-20
    Details
    In: Health Expectations, Wiley, Vol. 22, No. 1 ( 2019-02), p. 3-20
    Abstract: Patient and public involvement ( PPI ) in health research is on the rise worldwide. Within cancer research, PPI ensures that the rapid development of medical and technological opportunities for diagnostics, treatment and care corresponds with the needs and priorities of people affected by cancer. An overview of the experiences, outcomes and quality of recent PPI in cancer research would provide valuable information for future research. Objective To describe the current state of PPI in cancer research focusing on the research stages, applied methods, stated purposes and outcomes, and challenges and recommendations. Methods A search was conducted on PubMed, CINAHL and Psyc INFO for literature published from December 2006 to April 2017. Original research studies describing the involvement of cancer patients, stakeholders and carers as active partners at any stage of the research process were included. Results Twenty‐seven studies were included, the majority reporting PPI at the early stages of research, that is, during the definition and prioritization of research topics and the development of recruitment strategies. Few studies reported PPI at later stages and across the research process. Challenges and recommendations were only briefly described, and critical reflection on the PPI process was lacking. Conclusion PPI needs to be integrated more broadly in the cancer research process. The quality of reporting PPI should be strengthened through greater critical reflections including both positive and negative experiences of the PPI process. This will contribute to the further development of PPI and its potential in cancer research.
    Type of Medium: Online Resource
    ISSN: 1369-6513 , 1369-7625
    URL: Issue
    URL: Article
    DOI: 10.1111/hex.2019.22.issue-1
    DOI: 10.1111/hex.12841
    Language: English
    Publisher: Wiley
    Publication Date: 2019
    detail.hit.zdb_id: 2006357-X
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  • 9
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    Patient perspectives and experiences of the rapid implementation of digital consultations during COVID-19 — a qualitative study among women with gynecological cancer
    Springer Science and Business Media LLC ; 2022
    In:  Supportive Care in Cancer Vol. 30, No. 3 ( 2022-03), p. 2545-2554
    Details
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 30, No. 3 ( 2022-03), p. 2545-2554
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    URL: Article
    DOI: 10.1007/s00520-021-06651-6
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 1463166-0
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  • 10
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    Recommendations for a Patient Concerns Inventory specific to patients with head and neck cancer receiving palliative treatment
    Springer Science and Business Media LLC ; 2023
    In:  Supportive Care in Cancer Vol. 31, No. 1 ( 2023-01)
    Details
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 31, No. 1 ( 2023-01)
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    URL: Article
    DOI: 10.1007/s00520-022-07471-y
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 1463166-0
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