Objective:

To explore the experiences, impacts, and perceptions of people living with adrenocortical carcinoma (ACC) to inform the development of comprehensive, person-centred care.

Approach:

• Methodology: A qualitative study using Van Manen’s hermeneutic phenomenological methodology, involving semi-structured interviews guided by frameworks such as Mullan’s concept of survivorship and Bowen’s Family System Theory.

Key Findings:

• Twenty-oneparticipants(12women,9men;meanage50,range28–74)fromtheUSA,Canada,UK,Europe,Nigeria,andAustraliareportedlivingwithACCasanexistentialchallenge.Participantsexperiencedsignificantpsychologicalburdenanduncertainty,withsomeexpressingthoughtsofsuicide.Astrongneedforhope,understanding,andcompassionateongoingcarewashighlighted.

Interpretation:

Living with ACC involves navigating limited survival prospects and demanding treatments.

Limitations:

• The study's qualitative nature may limit generalizability.
• Participants were recruited from specific support groups, which may not represent all ACC patients.

Conclusion:

ACC is a complex condition that necessitates a balance between treatment burden and quality of life.