Wendy Sterckx1, Annemarie Coolbrandt2, Paul Clement1, Sonja Borgenon1, Marleen Decruyenaere1, Steven De Vleeschouwer3, Anne Mees1, Bernadette Dierckx de Casterlé4. 1. Department of General Medical Oncology, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium. 2. Department of General Medical Oncology, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium; Center for Health Services & Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35, 3000 Leuven, Belgium. Electronic address: annemarie.coolbrandt@uzleuven.be. 3. Department of Neurosurgery, University Hospitals Leuven, Herestraat 49, 3000 Leuven, Belgium. 4. Center for Health Services & Nursing Research, Katholieke Universiteit Leuven, Kapucijnenvoer 35, 3000 Leuven, Belgium.
Abstract
PURPOSE: Patients with high-grade glioma (HGG) face debilitating symptoms and a poor prognosis. The aims of this study were to better understand how patients with HGG experience life with a brain tumor, and to explore their professional care needs. METHODS: We conducted a qualitative research of HGG patients' experiences using semi-structured interviews and using a Grounded Theory approach. Participants were recruited during patients' hospital visits for treatment or follow-up at the University Hospitals Leuven, Belgium. Seventeen HGG patients were interviewed for the study. RESULTS: Interviews showed that HGG diagnosis left patients feeling like everything was surreal. From that point on, their life was marked by loss. HGG patients sometimes felt disregarded by family caregivers, professional caregivers, and the health care system. They felt as if they were on the "sidelines" of their own life. Despite the devastating experience of living with this type of brain tumor, HGG patients also expressed great inner strength, and they tried to maintain hope. Their pivotal professional care needs concerned information, communication, and accessibility. CONCLUSIONS: Diagnosis of HGG changes life drastically. Our results highlight the need for professional caregivers to be more considerate and supportive of patients with this life-changing diagnosis. Additionally, professional caregivers need to acknowledge these patients as persons and strive to empower them in order to bolster their personal strength.
PURPOSE:Patients with high-grade glioma (HGG) face debilitating symptoms and a poor prognosis. The aims of this study were to better understand how patients with HGG experience life with a brain tumor, and to explore their professional care needs. METHODS: We conducted a qualitative research of HGG patients' experiences using semi-structured interviews and using a Grounded Theory approach. Participants were recruited during patients' hospital visits for treatment or follow-up at the University Hospitals Leuven, Belgium. Seventeen HGG patients were interviewed for the study. RESULTS: Interviews showed that HGG diagnosis left patients feeling like everything was surreal. From that point on, their life was marked by loss. HGG patients sometimes felt disregarded by family caregivers, professional caregivers, and the health care system. They felt as if they were on the "sidelines" of their own life. Despite the devastating experience of living with this type of brain tumor, HGG patients also expressed great inner strength, and they tried to maintain hope. Their pivotal professional care needs concerned information, communication, and accessibility. CONCLUSIONS: Diagnosis of HGG changes life drastically. Our results highlight the need for professional caregivers to be more considerate and supportive of patients with this life-changing diagnosis. Additionally, professional caregivers need to acknowledge these patients as persons and strive to empower them in order to bolster their personal strength.
Authors: Kerri-Anne R Mitchell; Kelly J Brassil; Serena A Rodriguez; Edward Tsai; Kayo Fujimoto; Kate J Krause; L Aubree Shay; Andrew E Springer Journal: Psychooncology Date: 2020-08-23 Impact factor: 3.894
Authors: Sebastian Otto-Meyer; Jan Lumibao; Eugene Kim; Erik Ladomersky; Lijie Zhai; Kristen L Lauing; Denise M Scholtens; Frank Penedo; Christina Amidei; Rimas V Lukas; Derek A Wainwright Journal: Curr Opin Behav Sci Date: 2019-02-26
Authors: Helle Sorensen von Essen; Frantz Rom Poulsen; Rikke Hedegaard Dahlrot; Karin Piil; Karina Dahl Steffensen Journal: Int J Environ Res Public Health Date: 2022-06-16 Impact factor: 4.614
Authors: Anthony Byrne; Anna Torrens-Burton; Stephanie Sivell; Fabio Ynoe Moraes; Helen Bulbeck; Mark Bernstein; Annmarie Nelson; Helen Fielding Journal: Cochrane Database Syst Rev Date: 2022-01-06
Authors: Antje A Seeber; A Jeannette Pols; Albert Hijdra; Hepke F Grupstra; Dick L Willems; Marianne de Visser Journal: BMC Palliat Care Date: 2019-06-13 Impact factor: 3.234