Background
Significant treatment and resource allocation are directed towards improving the support and services for people with high-grade glioma, given significant care burden and high supportive care needs. People diagnosed with the rarer low-grade glioma (LGG) often live for an extended period following diagnosis, finding ways to manage family, work, health, and relationships. This study explored the supporting social processes undertaken to accommodate a LGG diagnosis.
Material and Methods
Symbolic interactionism was the lens for this work, incorporating Charmaz’s grounded theory methods to identify the social processes undertaken in accommodating LGG. Semi-structured interviews were conducted with people diagnosed with LGG. Purposively selecting participants for their rich contribution to the data. All interviews were audio-recorded and transcribed verbatim. Data analysis occurred concurrently with interviews to co-construct social processes, ensuring emerging concepts remained grounded in the data. Concepts were confirmed through coding and constant comparison. Data analysis was managed through NVivo(v11.4).
Results
Interviews were conducted with 13 people with grade 2/3 gliomas in late 2016, median of 67 minutes. Participants were from Australia, (both rural and urban) and median of 4.5 years since diagnosis. ‘Accommodating Life Disruption’ emerged with three supporting social processes describing how people dealt with a diagnosis of LGG: 1) Dealing with contradictions; identifying ambiguous clinical context and language and narrative used in LGG; 2) Defining time; marking a point in time for taking stock of resources 3) re-negotiating identity; how people with LGG take control, make connections and create a good life.
Conclusion
This study highlights the unique social processes undertaken to accommodate the diagnosis of LGG and identifies clear targets for improving supportive care resources and survivorship practices for people with LGG. The findings also offer opportunities to consider and improve how health professionals interact and communicate the diagnosis for people with LGG and their families.