Seeing the picture
Wulf Livingstone talks to DDN about an innovative study that explores the relationship between substance use and sight loss
This article summarises a recently published research report of an exploratory study of the relationship between substance use – alcohol and other drugs – and sight loss. It focuses on the messages from the research for those using substances and those supporting them.
The study originated from the practice concerns of a sight loss rehabilitation services about how best to support people with alcohol problems in particular. The study focussed on the nature and extent of the relationship between substance use and sight loss, the role substance use plays in the lives of people with sight loss, and the experiences of professionals providing support. While it began with a focus on alcohol, it expanded to include experiences of other drugs.
The project adopted a mixed methods approach comprising statistical analysis of existing large-scale surveys, a structured review of international research publications, and semi-structured interviews with people living with sight loss and substance problems and the views of people working with, and supporting, them. Individuals experiencing both concerns were recruited from across the UK and ranged from 21 t0 80. Professionals interviewed were predominantly those working with sight loss, and included a smaller number of substance use specialists.
The findings of the research can be summarised across three key themes:
Prevalence of experiences of both issues – drawing on evidence from two national household surveys and one national patient survey, the evidence suggests that people with sight loss are more likely to abstain from alcohol use than their sighted peers. Within this broader context, there is evidence of a very small percentage of the total sight loss population who experience problems with their alcohol or drug use (many of the individuals we interviewed had never had contact with drug and alcohol services). We found very little evidence of routine assessment and data collections of sight loss by substance use services (and vice versa). This suggests that the known numbers of those experiencing both concerns may be smaller than the actual number of people living with both issues.
Relationship between substance use and sight loss – There is very little evidence for alcohol or drug use leading directly to sight loss. Although some individuals interviewed indicated they had been told their sight loss was a direct consequence of their substance use: ‘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, so I thought if anything, it might get my liver…’
The evidence appears to be stronger in identifying alcohol and drug use (like smoking) as a risk factor for the development of certain eye conditions. For many people substance use can be part of complex life and health styles that increases the risk of sight loss: “Every time I take a drink, the one thing I worry about the most is the fact that I’m going to affect my eyesight even more from it.” In addition it appears that alcohol and drug use has a role to play as a coping mechanism adopted during periods of sight loss and consequential adaptation to new routines: ‘So I think actually I do sit down and worry about my sight, then I have a beer, and I don’t [worry].’
Experience of individuals and professionals – the experience of living with heavy substance use and sight loss appears a highly individual and interwoven experience: ‘For me they’re two spinning balls, one egging on the other.’ Some substance users would appear to go onto to develop sight loss, while for others the problems with alcohol and drugs followed deterioration in sight.
These relationships reflect some of the risks to increased use; so for example boredom, isolation and pain relief; as well as the impact on employment, familial, health and other recovery-related agendas. One interviewee described her husband as having a ‘nervous breakdown because he couldn’t cope with, you know, with me drinking and then this [sight loss] came on top.’ While some people talked of really positive support, others reflected services and society that provides little by way of knowledgeable support about the relationship between sight loss and substance use.
The above picture highlights the need of those living with both experiences to receive more specific information and tailored support. Although the numbers of such people living with both experiences appears to be small, they present a range of challenges to those providing support and services to them. Consequently, substance use services need to consider more actively the possibility that people attending their services may be at risk from, or experiencing problems with, their sight loss. This will involve the gathering of routine assessment information, increasing their staff’s understanding of sight loss, the provision of improved guidance to and active engagement from those staff in sight loss concerns.
As an exploratory study, this research has begun to examine the overlap between sight loss and substance use. For those heavily using substances it suggests the need to think about potential sight loss implications. More broadly it suggests the need for extended data collection and research to help establish further the prevalence of sight loss amongst those using substances problematically. As much sight loss research is geared towards those over 50 years of age and, given problematic substance use impacts across all ages, this suggests the need for some focused studies, particularly on younger populations. In addition, we found very little research on the experiences of partners, families and carers. Amongst the professional population, increased partnership working, joint training and shared resources appear to provide a way forward to help meet some of the needs identified within the research.
The full report is available at http://alcoholresearchuk.org/alcohol-insights/alcohol-other-drugs-and-sight-loss-a-scoping-study
For more information about this project contact Wulf Livingston: w.livingston@glyndwr.ac.uk or 01978293471
Wulf Livingstone is a lecturer in social work at Glyndwr University, Wrexham