Hope is everything - an hermeneutic phenomenological study on the lived experiences of individuals with adrenocortical carcinoma.
Adrenocortical carcinoma (ACC) is a rare and aggressive malignancy of the adrenal glands, characterised by high recurrence rates and poor survival outcomes. Living with ACC is associated with significant uncertainty and psychological burden. This study aimed to explore the experiences, impacts, and perceptions of people living with ACC to inform the development of comprehensive, person-centred care.
A qualitative study underpinned by Van Manen's hermeneutic phenomenological methodology was undertaken. Semi-structured interviews were conducted, informed by Mullan's concept of survivorship, Bowen's Family System Theory, and the concept of resilience. These frameworks guided both data collection and analysis.
Twenty-one participants (12 women, 9 men; mean age 50, range 28-74) from the USA, Canada, UK, Europe, Nigeria, and Australia took part in interviews totalling 19 hours and 34 minutes. Five themes and 11 subthemes emerged. Living with ACC was described as an existential challenge, as participants navigated the reality of limited survival alongside demanding, life-prolonging treatments. The pursuit of survival was likened to a rollercoaster, requiring sustained support and continuous adaptation. For some, these challenges became overwhelming and led to thoughts of suicide. Participants highlighted a strong need for hope, understanding, and compassionate, ongoing care to help them cope, adapt, and rebuild their lives.
ACC is a complex and life-altering condition that requires careful balancing of treatment burden with quality-of-life considerations. Current healthcare systems do not adequately meet the needs of this population. Future research should focus on developing and evaluating interventions to better support individuals living with ACC and mitigate the psychological and practical impacts of the disease.
A qualitative study underpinned by Van Manen's hermeneutic phenomenological methodology was undertaken. Semi-structured interviews were conducted, informed by Mullan's concept of survivorship, Bowen's Family System Theory, and the concept of resilience. These frameworks guided both data collection and analysis.
Twenty-one participants (12 women, 9 men; mean age 50, range 28-74) from the USA, Canada, UK, Europe, Nigeria, and Australia took part in interviews totalling 19 hours and 34 minutes. Five themes and 11 subthemes emerged. Living with ACC was described as an existential challenge, as participants navigated the reality of limited survival alongside demanding, life-prolonging treatments. The pursuit of survival was likened to a rollercoaster, requiring sustained support and continuous adaptation. For some, these challenges became overwhelming and led to thoughts of suicide. Participants highlighted a strong need for hope, understanding, and compassionate, ongoing care to help them cope, adapt, and rebuild their lives.
ACC is a complex and life-altering condition that requires careful balancing of treatment burden with quality-of-life considerations. Current healthcare systems do not adequately meet the needs of this population. Future research should focus on developing and evaluating interventions to better support individuals living with ACC and mitigate the psychological and practical impacts of the disease.