1. A Voice for the Voiceless…. Understanding the Narratives of Alcohol Related Liver Disease Lois Alice Styles –Clinical Doctoral Research Fellow / Alcohol Nurse Specialist University of Southampton / Portsmouth Hospitals NHS Trust Supervisors: Dr Nikki Jarrett (University of Southampton) Dr Greta Westwood (University of Southampton – Portsmouth Hospitals NHS Trust) Prof Mo Coombs (University of Victoria NZ – University of Southampton) Alcohol Research UK 15 th March 2016

2. 2 WHY?

3. 3 Purposive Sampling Semi structured in-depth interviews 20 participants with ARLD (19 interviewed) 10 family / friends of those with ARLD (9 interviewed) Voice Centered Relational Method Narrative design

4. 4 Voice Centred Relational Method PlotRelationships The use or absence of ‘I’ Environment

5. 5 17 males 3 females Aged 35-72 10 currently drinking alcohol 10 abstinent None currently employed 3 males 7 females Aged 22-75 0 alcohol dependant All family members or partners Part 1. Participant demographics N= 20 Part 2. Participant demographics N=10

6. 6 “Rehab is a bubble….then they release to the jungle of life” “It’s a vicious circle of addiction” “I'm the definition of a black sheep, outcast from family, from society, even from the hospital” “I wish somebody would be honest with me, how serious is this?” “ I just want to Live…is that too much to ask?” “I chose to drink.. Me. I made that choice…But we don’t always make the good choices do we?”

7. 7 Part 1 Emerging Themes Family / Parents high alcohol consumption Ownership of Alcoholism Cycles of rehabShame Part 2 Emerging Themes Stigma associated with Alcohol Lack of SupportLiesHope

8. 8 Paul & Gemma Pseudonyms used.

9. 9 Paul. 54 years old. Patient with Alcohol Related Decompensated Cirrhosis. Actively Drinking Alcohol “Rock n Roll does this to you” “I've brought this on myself” “Its (his liver) not going to get better, its on its way out” “I’ve chosen not to give up drinking, it’s the only choice I get, it’s my choice” “I felt bulletproof and now I know I’m not” “As a [identifiable information removed] writer the hardest thing is my mind forgetting words, I'm a wordsmith and I cant think of words. The ascities and the drainage is annoying and the pain is a ‘pain’ but the worst is loosing my words”

10. 10 Gemma. 29 years old. Shop Worker. Partner to Paul. Does not drink Alcohol “Life is a rollercoaster. The uncertainty is the constant” “His mood swings are the worst, sometimes I’m scared, he’s never hurt me though” “If I could write a book about my life I would call it ‘Mind the Gap’… Its like because he doesn’t wanna give up the drink he isn't getting detox help, his liver is shot and he is dying but not quick enough for palliative care… we live our lives in this gap.” “We go round and round in circles” “You have to have a sense of humour to live my life”

11. 11 Thank you for listening Any Questions? las2g08@soton.ac.uk