"Invisible, you are letting go of a lot, and you would do it again": a qualitative interview study of the existential thoughts, feelings, and agency of healthy siblings with a sister or brother in palliative care in Denmark.

BACKGROUND: Having a sibling is one of the most significant relationships in life. Living with a life-threateningly ill sister or brother receiving palliative care affects the healthy siblings’ life in several ways. Healthy siblings often feel overlooked and neglected and withhold their thoughts, emotions, and fears to shield their parents or themselves, which may cause emotions of fear, anger, anxiety, and depression. Research is limited concerning existential dimensions of life in healthy siblings living with a sister or brother with a life-threatening condition, especially when it comes to research anchored in the healthy siblings’ experiences and voices. METHODS: In this phenomenological interview study, we explored how the healthy siblings express their existential thoughts, feelings, and agency. We conducted nine qualitative interviews with a total of six healthy siblings aged 10 to 21 years from September 2022 to April 2023. The interviews were audio recorded, transcribed verbatim, and analyzed using Max van Manen’s phenomenological approach. The findings were discussed using philosopher Axel Honneth’s theory, The Struggle for Recognition, as a structural framework. FINDINGS: We found that living with a sister or brother receiving palliative care entails a life with living costs and consequences that influence everyday life, requiring their healthy siblings to adapt and thereby affecting their developmental opportunities. The healthy siblings seem to be at risk of not receiving sufficient recognition, which may impact their self-confidence, self-respect, and self-worth. Free spaces serve as a way to divert from worries and difficulties, and as a space for achieving recognition for being oneself. Aligned care and communication are crucial for healthy siblings, as is experiencing a caring safety net.