"Try to keep things going" - Use of various resources to balance between caregiving and other aspects of life: An interview study with informal caregivers of persons living with brain tumors in Sweden.

Abstract

Purpose: Persons living with brain tumors may experience severe impairment, requiring social support (i.e., informal care). Although informal caregiving can be rewarding, it can also lead to physical or psychological burdens. The aim of this study was to explore how informal caregivers of persons living with brain tumors use resources available to them, including social support, to balance caregiving with other aspects of life.

Methods: Sixteen informal caregivers (14 partners, two adult children) of persons living with brain tumors, varied in gender (10 female, six male), age (26-79 years), and caregiving experience (1-20 years) were interviewed. Data were analyzed using conventional content analysis.

Findings: We generated nine categories representing informal caregivers' strategies grouped by resources used. Intrapersonal resources were used for: Flexibly adjusting to changing life situations; Separating the care recipient from the illness; and Reflectively renegotiating self-expectations. Interpersonal resources were used for: Coping together with the care recipient; Sharing responsibilities within the family; Seeking guidance from persons in similar situations; and Grouping social relations by function. Healthcare and community resources were used for: Active collaborations with healthcare staff and Accessing professional and community resources for mental well-being.

Conclusions: Informal caregivers used their intrapersonal, interpersonal, and healthcare and community resources in various ways for mainly emotional and instrumental support. More informational support from healthcare was desired, indicating that healthcare services, along with patient and caregiver organizations, may be able to enhance such support for informal caregivers. This could, in turn, allow more flexibility to manage caregiving alongside other life commitments.