"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. DESIGN: An explorative qualitative design. 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. 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. 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. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE There is a crucial need for a genuine nursing presence characterised by an attitude of open sensitivity and attentive listening to parents' existential experiences. Nurses should embrace the opportunity to engage in respectful and attentive dialogues with parents. Acknowledging that the insights emerging from these conversations can improve integrated and personalised nursing services worldwide. IMPACT Parents of children and young people with complex care needs often experience suboptimal healthcare. Additionally, access to quality healthcare services, particularly in rural areas, is limited, creating inefficiencies and coordination challenges. This study provides nurses, other health care professionals, researchers, and decision-makers with valuable perspectives on supporting parents' existential needs which may significantly impact their overall well-being and coping abilities, contributing to a more compassionate approach to family care. REPORTING METHOD: Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT OR PUBLIC CONTRIBUTION Parents of children and young people with complex care needs provided valuable feedback on the findings and implications of this work.