Perceptions and experiences of the subjective well-being of people with glioblastoma: a longitudinal phenomenological study

Abstract

Background Glioblastoma (GBM) is a devastating form of brain cancer, with a short life expectancy. In addition to this poor prognosis, people with GBM often experience symptoms which may have a profound impact on their subjective wellbeing (SWB). The aim of this study was to investigate the lived experiences and perceptions of people with GBM regarding their SWB. Methods The study adopted a longitudinal, hermeneutical phenomenological approach. Twenty-seven interviews were conducted with 15 patients over a period of two years. Most participants were interviewed twice on a face-to-face basis (during combined chemotherapy and radiotherapy, and again during adjuvant chemotherapy). The hermeneutic circle was used to guide data analysis. Results Data analysis identified four key themes that depicted the lived experiences and perceptions of SWB of people with GBM. ‘Experience of the disease’ focuses on the impact of diagnosis, symptoms and side effects. ‘Daily life’ relates to daily activities, family roles, work and social lives. ‘Coping’ includes the importance of normality and goal-setting. ‘Experiences of care’ focuses on the impact of the treatment schedule, experiences of care and impressions of the monitoring of QoL. Conclusion SWB is affected by a variety of factors throughout the GBM disease and treatment journey. The findings of this study suggest that healthcare professionals can enhance the SWB of people with GBM by providing personalised care that supports people to set themselves goals for the future and retain a degree of normality wherever possible.

Panorama epidemiológico de las neoplasias encefálicas con tratamiento quirúrgico en un hospital de tercer nivel en Guanajuato, México

“…Así como también si se presentan cambios en el sueño, equilibrio, sensaciones y sentidos (22) . Otros estudios mencionan categorías encontradas como un pronóstico terminal de experiencias negativas, experiencias positivas, enfrentar el tumor, la cirugía, el papel de la familia (23) . Es importante abordar en todos los aspectos en el paciente con tumor cerebral, después de la cirugía son: la vida interrumpida, navegando por la nueva realidad de vida, y sobrevivencia social versus separación (24) , otros pacientes encontraron depresión, deficiencias cognitivas, disminución de la función del rol, déficit neurológico, discapacidad neurológica, y el uso de silla de ruedas, posterior a la cirugía (25,26) .…”

Subjective Well-Being in People with Nephrotic Syndrome: Exploring Role of Lifestyle and Self-Confidence

“…In a separate study Newi et al (2022) demonstrate that individuals can attain higher levels of subjective well-being when they successfully manage stress and cultivate positive relationships with their peers. Furthermore, research conducted by Sutton et al (2023) indicates that individuals with chronic diseases who are capable of setting their own goals, maintaining their roles within the family, and participating in daily activities tend to experience higher levels of subjective well-being.…”