“It’s a delicate dance” How informal caregivers experience the role and responsibilities of supporting someone living with a lower-grade glioma

Background
People with lower-grade gliomas (LGG) often require long-term support with a condition that causes substantial symptom burden and is likely to progress. Partners, family, and friends often become informal caregivers (IC), but the types of support they provide, and their experiences of this, has not been well investigated. We aimed to understand how ICs experience the role and responsibilities of supporting people with LGG.

Methods
This descriptive qualitative study used semi-structured interviews to explore the role and responsibilities of a purposive sample of ICs across the United Kingdom, who currently, or in the past five years, support(ed) someone with an LGG. Interviews were audio-recorded and transcribed, and an inductive thematic analysis was conducted.

Results
Nineteen ICs were interviewed (mean age 54.6 years; 5 males/14 females). While most participants spoke about ‘Being a ‘carer’’, the level of care provided varied. Participants conveyed their experiences with ‘Adjusting for cognitive difficulties’, ‘Emotional protection’, ‘Supporting participation in daily life’, and ‘Healthcare advocacy’. ICs often felt ‘abandoned’ by healthcare services to provide required care themselves, and reported experiences with ‘Balancing the challenges of caregiving’, including conflict with work/childcare. Issues around ‘Maintaining the care recipient’s independence’ were interwoven throughout.

Conclusions
ICs of people with LGG provide wide-ranging support to help manage the consequences of the illness. Consideration of ways to help ICs with the challenges of fulfilling this role, particularly, balancing support provision without inhibiting the care recipient’s independence, could help improve outcomes for ICs and people with LGG.