‘A Constant Black Cloud’: The Emotional Impact of Informal Caregiving for Someone With a Lower-Grade Glioma

Abstract

Those closest to people with lower-grade gliomas (LGGs) often assume the role of informal caregiver (IC). The additional responsibilities mean ICs of people with cancer can experience adverse impacts on their own lives. We explored the emotional impact of informal caregiving for people with LGGs. This was a descriptive qualitative study within the multi-method Ways Ahead project. We conducted semi-structured interviews with individuals from the United Kingdom, who currently, or in the past 5 years, informally cared for someone with an LGG. Interviews encompassed experiences of emotional impact as a consequence of caregiving for someone with an LGG. Inductive thematic analysis was undertaken. We interviewed 19 ICs (mean age 54.6 years; 14 females, 5 males). Participants reported substantial emotional impact. Four themes and associated subthemes were generated: Emotional responses to the illness (e.g. feeling helpless), Emotional responses to the unknown (e.g. anxiety about future uncertainty), Emotional consequences of care recipient changes (e.g. challenges of changed relationship dynamics), and Emotional weight of the responsibility (e.g. feeling burnout). Emotional impact in one area often exacerbated impact in another (e.g. future uncertainty impacted feelings of helplessness). Participants detailed the factors that helped them manage the emotional impact (e.g. being resilient). ICs of people with LGGs can experience wide-ranging emotional responses to and impacts of the illness, uncertain prognosis, care recipient changes, and the toll of caregiving. Adjustment and resilience are key protective factors, though further consideration of ways to identify and fulfil the emotional support needs of ICs of people with LGGs is required.

Understanding supported self‐management for people living with a lower‐grade glioma: Implementation considerations through the lens of normalisation process theory

“…Informal caregivers may have their own perspectives of what is, or should be, important to the support recipient, and these should not dominate the priorities of the people with LGG themselves. Moreover, informal caregivers may have their own supportive care needs, particularly related to emotional burden, 37,38 and, while they are important, how these can best be met requires further consideration. For example, informal caregivers of people with a brain tumour desire stronger connections with HCPs to help them feel able to provide support 39 .…”

High costs, low quality of life, reduced survival, and room for improving treatment: an analysis of burden and unmet needs in glioma

“…Glioma imposes a humanistic burden not only on patients but also on their caregivers, ranging from feeling helpless and burnt out to negative effects of the disease on the relationship with the patient ( 74 , 75 ).…”