Background Chronic, complex or hard-to-heal wounds generate substantial clinical burden and wide psychosocial consequences. Understanding patient and family experience is essential to optimise care pathways and continuity of care.

Objective To explore the lived experience of patients and/or family members during treatment and follow-up in specialist wound units within a public health system, and to identify perceived needs, barriers and expectations to inform service improvement.

Methods This was a qualitative study using a phenomenological approach. Purposeful sampling sought maximum heterogeneity (wound type, age, sex, geographical area and care setting). Semi-structured, in-depth interviews were conducted between May and October 2025 with adults and/or family carers under active follow-up in specialist wound units. Interviews were audio and/or video-recorded, transcribed verbatim, and analysed inductively using thematic analysis with investigator triangulation and consensus procedures.

Results Thirty-six interviews were completed. Four overarching themes emerged: (1) a non-linear care pathway marked by delays and challenging transitions between primary and specialist care; (2) the relational and informational dimension, where empathy, clarity and team continuity increased trust and perceived safety; (3) a marked biopsychosocial impact, including functional limitation, emotional distress and identity disruption; and (4) coping sustained by family support and personal strategies, such as patience and normalisation of suffering.

Conclusions Participants described prolonged trajectories in which continuity, coordination and communication were as influential as technical care.

Implications for clinical practice Strengthening inter-level coordination, improving consistent patient information and integrating psychosocial assessment may enhance patient experience and care quality.