Spouse Caregivers' Experiences of Suffering in Relation to Care for a Partner With Brain Tumor: A Qualitative Study

Spouses often undertake the main caring role for a partner with primary malignant brain tumor (PMBT). Yet, demanding and challenging caring responsibilities especially because of the partner's cognitive declines can affect the spouse caregiver's well-being.

The aim of this study was to investigate spouses' experiences of suffering in their role as main caregiver of a partner with PMBT.

A hermeneutical qualitative design was used to collect and analyze data. Ten spouses (aged 36-76 years) were interviewed in depth twice 1 year apart, using semistructured interview guides.

The spouse caregivers' experiences of suffering in their role as their partner's main caregiver were interpreted according to 3 central themes: "Enduring everyday life," "Being overlooked and hurt," and "Being acknowledged and feeling good."

Spouse caregivers of a partner with PMBT are suffering from exhaustion and suppression of their own emotions to endure the caring responsibilities. They need support to manage their everyday hardship; however, their experiences seem to be easily overlooked. This causes disappointment and hurts their dignity. Acknowledgment through simple acts of practical help or time to talk are consoling and alleviate their experiences of suffering.

An intervention that supports healthcare professionals to facilitate the spouse caregivers' suffering is welcoming. The focus of the intervention may involve a sensitive awareness toward the spouse caregiver's individual resources and limitations and the relational and communicative competences of the healthcare professionals in their encounters with spouse caregivers that avoid hurting the spouse caregiver's dignity.