SIGHT LOSS AND SUBSTANCE USE:USERS’ PERSPECTIVES

Prof Sarah GalvaniManchester Metropolitan University

6th November 2015 – SSA Conf, YorkTeam: Dr Wulf Livingston, Glyndwr University;

Hannah Morgan, Lancaster University; Dr Sarah Wadd, University of Bedfordshire

The studyCo-funded by Thomas Pocklington Trust and Alcohol Research UK

Emerged from practice concerns Exploratory Multi-component

1. Existing data set analysis for prevalence data

2. Comprehensive literature review3. Professionals’ experiences4. Service users’ experiences

Data collection and analysis Mixed methods

Research question

What is the role substance use plays in the lives of people with sight loss?

Methodology Purposive and snowball sampling

Flyers, facebook, linked in, twitter, via national charities etc

Face to face or telephone interviews Semi-structured

Thematic analysis Nvivo Double coding – quality control check

Sample profile 17 of 26 responses met criteria Gender: Male = 13; Female = 4 Age: average 53 years (7 people under 50) Ethnicity: White English/British = 16; Asian = 1 Employment: Part-time paid = 4; Unpaid employment = 2;

Students = 2; Retired = 3; "Full-time mum" = 1; Unemployed = 5.

Smoking: Never = 6; Previous = 6; Current = 5 Sight loss: 1-5 years ago = 4; 5-10 years ago = 3; 10-20

years ago = 3; 20-30 years ago = 1; 30 yrs + = 5; since birth = 1

Drug of choice: Alcohol = 7; Illicit drugs = 1; prescribed meds = 3; poly drug use = 6

Eight key themes The impact of sight loss on their lives Substance use as a cause or contributor to sight

loss Using substances to cope The challenges of negotiating substance use with

sight loss The impact on others Knowledge of other people with sight loss and

substance problems Services attended Service access and improvements.

Substance use: cause or contributor Cause: some participants told their substance use

‘caused’ their sight loss or believed so themselves Alcohol Prescription drugs Diagnoses – malnutrition amblyopia or toxic amblyopia **

Contributor Alcohol combined with smoking, poor diet, other drugs “I had an alcohol problem long before my sight loss. Did

the sight loss aggravate the alcoholism or did the alcoholism aggravate the sight loss? For me they’re two spinning balls, one egging on the other.” (Martin, 41- 45 years)

Cause “...it was caused by [alcohol], they say, toxic

amblyopia. I was told that ... I shouldn’t drink or smoke because I’m an alcoholic so they said 'cut down as much as you can'. I thought, because I was hitting the booze very heavily, ... if anything, it might get my liver…” . (James, 51-55 years old)

“The way they say amblyopia, I don't think it was malnutrition amblyopia, I think it was toxicity amblyopia, through the drink. Because obviously the drink was the one that poisoned me to that point.” (Charlie, 31-35 years old).

Substance use as coping mechanism Provides group identity “Numbing the pain” of sight loss through

drug use “Dulls the frustration” Response to loss of professional and

personal confidence Loss of independence Loss of relationships Wish to “be crazy” – not done so in youth

(sight loss when young)

Negotiating substance use with sight loss Nine of 17 participants continued to use 6/9 reported reduced substance use 3/9 continued to use heavily

Taxis – delivery method for alcohol and other drugs

Avoiding conflict, eg. misinterpretation of ‘dirty looks’ in pub or bumping into people accidentally

Needed familiar pub layout and environment, e.g. knowing where furniture and toilets are

Summary Combination of sight loss and substance use

poses emotional and practical challenges. Diverse range of experiences of service reponses Some felt strongly that substance use had

triggered/caused their sight loss Some aware it was a contributor Many accepted substance use a coping

mechanism Sight loss adds an additional challenge to

negotiating continued substance use and to professionals supporting them.

More information Alcohol Research UK website

http://alcoholresearchuk.org/alcohol-insights/alcohol-other-drugs-and-sight-loss-a-scoping-study/

Thomas Pocklington Trust website http://pocklington-trust.org.uk/news/news/news_channe

ls/alcoholandsightloss.html

Contact me S.Galvani@mmu.ac.uk 07775 680418

N.B. Pick up newly published Practice Guidance available at conference