Endocrine Abstracts

Background: Adrenocortical carcinoma (ACC) is a rare and aggressive cancer of adrenal glands with an incidence worldwide around 0.7–2 cases per million per year in adult populations. The median age at diagnosis is 56 years old, with women and white Caucasians being more frequently affected. Overall median survival rate can be as low as 17 months with 5-year survival rate around 31.2%. Our systematic review identified the lack of qualitative study on the experiences of ACC. Consequently, an explorative approach using interpretative phenomenology couple with Van Manen hermeneutic methodology was used to explore the meanings of living with ACC. I have 24 years of immersion in looking after people living with ACC. This methodology allows me to use my experience, knowledge, and skills to make sense of people’s experiences.

Aims: The study aims to investigate the lived experience of people diagnosed with ACC. The study objectives are: i) to understanding meaning and impact of ACC on physical, emotional, mental and psychological on people’s wellbeing; ii) to understand how they manage their condition; iii) to find out their sources of help and support of living with ACC.

Method: Twenty-one participants living with ACC were purposively recruited and individually interviewed online using semi-structured questions. They were recruited from ACC support groups from US, Canada, UK, EU, Africa and Australia. The interviews were transcribed and analysed using thematic analysis. Five key main themes that emerged are: existential conundrums, inadequate care & support, life is like a roller coaster, anchoring ways for survival, living, and moving on. Lived time, lived space, lived body, and lived relation (van Manen 1997, 2014) will be used to gain insight into participants’ experiences and inform future supports and interventions needed. Theory on survivorship by Mullan (1985) and Bowen Family System Theory (Kerr & Brown, 1988) were used to guide interview process to find the impact and meaning of ACC on people’s lives. What the work means to the research area: The aim to improve understanding on the people with this condition so that further studies can be undertaken to improve the experiences and care pathways for them.