"The less they talk about it, the more we think about it": a qualitative interview study of the existential agency of children and young people when they are relatives of a family member dying from cancer in a hospice in Denmark.

Abstract

Background: Young relatives often grapple with a range of complex emotions, including fear, loneliness, and isolation, which are compounded by a lack of support and recognition. These experiences are deeply existential in nature, affecting their sense of meaning, identity, and emotional well-being. Despite the significance of these experiences, there remains a lack of scientific knowledge regarding the existential dimensions of the lives of young relatives facing the imminent death of a family member, particularly from the perspective of children and young people, whose voices and experiences are frequently underrepresented in research. In this phenomenological interview study, we explored the existential agency, emotions, thoughts, and concerns of children and young people who are relatives of a family member dying from cancer in a hospice in Denmark.

Methods: In collaboration with four hospices in Denmark, we conducted 17 qualitative interviews with young relatives aged 6 to 23 years from September 2021 to January 2023. All interviews were audio recorded, transcribed verbatim, and subjected to phenomenological analysis following a modified Husserlian approach, as developed by Amedeo Giorgi. The empirical findings were discussed in relation to The integrated process model of loss and grief - An interprofessional understanding, as developed by Guldin and Leget.

Findings: We found that being a young relative resembles a balancing act through unknown and uncertain territory, navigating an adaptive process that entails dealing with various ultimate existential concerns. Free spaces for being and being perceived as oneself are significant, likewise when dealing with existential concerns and tensions. Young relatives discern authenticity, and the balancing act is reciprocal; their immediate surroundings must also balance and align their care and communication.

Trial registration: The study was retrospectively registered at SDU Research & Innovation Organisation (SDU RIO) and granted permission to commence processing of personal data, with a legal basis under the Data Protection Act §10, notification number 11,500.