Beyond standard care: Fathers’ perspectives on healthcare and related support services when caring for a child with a progressive life-limiting condition—A qualitative study

BACKGROUND: Fathers' experiences are seldom reflected in paediatric palliative care research, and existing studies predominantly focus on malignant conditions. Less is known about fathers' experiences with healthcare and related support services when caring for a child with a progressive life-limiting condition. These conditions are often marked by long and unpredictable trajectories and complex care needs. AIM: To gain an in-depth understanding of how fathers experience healthcare and related support services while caring for a child with a progressive life-limiting condition. DESIGN: A qualitative interview study grounded in phenomenological hermeneutics. SETTING/PARTICIPANTS: Thirteen Norwegian fathers of children aged 1-18 years with a progressive life-limiting condition lasting ⩾12 months. All children lived at home and received varying levels of respite or in-home care. RESULTS: . CONCLUSIONS: Fathers caring for a child with a progressive life-limiting condition experience fragmented healthcare and welfare services, which place substantial advocacy and coordination burdens on families. More flexible, coordinated and father-inclusive paediatric palliative care pathways are needed to recognise parental expertise and support both parents as equal caregivers.