What matters to persons living with brain tumors and their informal caregivers? An interview study of qualities in interpersonal relations

Abstract

Background: Brain tumor is a severe cancer that may make the person with the illness and their informal caregivers dependent on support in self-care. Social network mapping is a method to assess an individual's social relations and resources, which may help to identify high-quality relations and potential sources of support. Yet, which relations matter for individuals living with brain tumors and their informal caregivers and how social network mapping could be used in self-care need further investigation.

Aim: To explore how persons living with brain tumors and informal caregivers perceive the potential usefulness of a social network-mapping tool in their self-care and to describe the qualities in the interpersonal relations that they map.

Methods: Seven persons living with brain tumors and 12 informal caregivers (whereof six bereaved) participated in in-depth interviews and tested a social network-mapping tool developed by an informal caregiver (CareMaps). Data were analyzed inductively using thematic analysis. The COREQ checklist was used for reporting.

Findings: Participants expressed positive opinions about the CareMaps tool but raised some questions regarding its design, how to use it in their self-care, and the optimal timing of introducing the tool. Two themes reflecting qualities in relations were found: self-care supportive relations during which daily management of the brain tumor is in focus and identity-preserving relations that allow individuals to disconnect from their brain tumor experiences. Both types of relations were described as important, were found in different contexts (e.g., social life, work life, and healthcare), and emphasized contrasting qualities.

Conclusion: The CareMaps tool was helpful in elucidating qualities in interpersonal relations that contribute to individuals' self-care. Future research should investigate how social network-mapping tools that capture quality in social relations should be designed and used to support individuals in their self-care.

Keywords: Brain tumor; Caregiving; Chronic illness; Person-centered care; Qualitative research; Self-care; Social network mapping.