Fathering a Child With a Progressive Life-Limiting Condition in the Context of Pediatric Palliative Care: A Qualitative Interview Study

Fathers report feeling sidelined and being treated as secondary parents in healthcare settings. Despite their vital caregiving contributions, fathers remain underrepresented in pediatric palliative care research, particularly outside oncological contexts. This qualitative study, using a phenomenological hermeneutical design, explores the lived experiences of Norwegian fathers raising children with progressive life-limiting conditions. Thirteen fathers of children aged 1-18 years participated in in-depth, semi-structured interviews conducted online or in person. All children had received a diagnosis at least 12 months prior, lived at home, and received varying levels of care support. The analysis followed a modified version of Ricoeur's interpretation theory, as described by Lindseth and Norberg in their three-step phenomenological hermeneutical method, and revealed four themes: (1) "Balancing between grief and relief," where fathers described emotional ambivalence during the diagnostic phase; (2) "Searching for stability in an unpredictable life," where fathers often turned to information and peer support to manage uncertainty; (3) "Feeling homebound yet making space for life," where many felt confined to the home but made deliberate efforts to create meaningful experiences for their children and themselves; and (4) "Juggling between being a dad, caregiver, and breadwinner," where fathers navigated complex and often conflicting roles. The findings highlight the emotional and practical challenges fathers face and underscore the importance of recognizing their unique support needs. Proactive involvement in care planning, access to pediatric palliative care services, peer networks, and respite opportunities are essential not only for the child's well-being but also to sustain fathers' caregiving capacity.