“I Am Forever Changed”: A Phenomenological Study of the Existential Experiences of Parents of Children and Young People With Complex Care Needs

Abstract

Aim - To explore the existential lived experiences of parents of children and young people with complex care needs.<p>

<p>Design - An explorative qualitative design.<p>

<p>Methods - We conducted 16 in-depth interviews with parents of children and young people with complex care needs across Norway from February to May 2022. Data collection and analysis were guided by the theoretical framework of van Manen's phenomenology of practice approach.<p>

<p>Results - Four distinct but interwoven themes reflecting the comprehensive and holistic nature of parents' existential lived experiences emerged: lived body: “I am forever changed”; lived space: Seeking sanctuary; lived time: “Time doesn't seem to exist”; and lived self-other: Parents' changing relationships.<p>

<p>Conclusions - Parents' ongoing efforts to manage fluctuations in their daily lives profoundly affect the existential aspects of their well-being, suggesting that respectful and attentive nurse–parent relationships can nurture existential growth.