AbstractAims and Objectives The aim of this study was to investigate the lived experiences and perceptions of people with high grade gliomas (HGG) regarding their subjective wellbeing (SWB).The objectives were:• To explore the lived experiences and perceptions of people with HGG in terms of their SWB at various points throughout their illness.• To clarify the meaning of the term ‘wellbeing’.• To investigate the lived experiences and perceptions of people with HGG regarding the assessment tools currently used to monitor their SWB.
Method Twenty-seven interviews were conducted with 15 patients over a period of two years. The majority of patients were interviewed twice on a face-to-face basis (shortly after surgery, and again following the completion of adjuvant treatment). The study adopted a longitudinal, hermeneutical phenomenology approach. Data were managed using NVivo 10 software and analysed using the Hermeneutic Circle.
Findings Analysis of the data identified four key domains in relation to the study aims. These were ‘daily life’, ‘experiences of care’, ‘psychological wellbeing’ and ‘health’. Each of these domains consisted of multiple themes, which were then critically analysed for their potential to threaten the SWB of people with HGG. Interpretive phenomenological analysis of the data identified a conceptual framework for SWB encompassing three key domains that appeared to be most relevant to participants. These were Hope, Sense of Identity and Sense of Control.
Literature Review Prior to data collection, a concept analysis of the SWB of people with cancer was conducted as a means of clarifying the general concept of ‘wellbeing’ before referring to it in discussions with participants. Following analysis of the longitudinal data, a literature review was undertaken to explore the evidence relating to the research question ‘What is the impact on wellbeing/quality of life of a diagnosis of high grade glioma?’ The evidence reviewed suggests that the Hope, Sense of Identity and Sense of Control domains of SWB identified in the study findings are threatened by a diagnosis of HGG as a result of issues such as loss of independence and normality, social isolation, poor communication and lack of information from health professionals. Strategies for the preservation of SWB were also acknowledged.
Conclusion Based on the study findings, a unique conceptual model of SWB was developed which represents the key findings. This model demonstrates that SWB consists of three fundamental domains: Hope, Sense of Identity and Sense of Control. The nature of these domains fluctuates over time as they are subjected to a variety of threats resulting from HGG diagnosis and treatment. However, participants identified strategies that helped to preserve a sense of wellbeing despite their diagnosis.
|Date of Award
|1 May 2021
|Jaqualyn Moore (Supervisor), Jo Armes (Supervisor) & Emma Briggs (Supervisor)