Design and Implementation of Web-based Support for Passive Drinkers by Akan Ibanga, Alex Copello, Jim Orford, Lorna Templeton and Richard Velleman

The Riddle “If I do not drink (or my drinking is so inconsequential it would go unnoticed), but will still be feeling the effects of a hangover long after it has worn off the binge drinker, Who Am I ? “ More importantly “Is There Help For Me?”

The Ripple Effect Individual Society Larger Society Family Friends

Out of court settlements

Should Affected Others be the Focus? Cross cultural evidence Behaviour of individuals with a drug problem Impact is irrespective of age or gender Difficulty to cope in ways that makes life more manageable

Taking Census: of passive drinkers?

Current Treatment focus Focus almost solely on issues of screening, identifying, and intervening briefly or otherwise, with the individual alcohol and drug misuser. Only involve the family members, to encourage or provide support to the user for entry into and retention in treatment (Velleman & Templeton, 2002, Copello and Orford, 2002). When considering brief interventions for alcohol or drug problems, this gap in service provision for family members is much wider

FAILURE TO INCLUDE FAMILY AND NETWORK Theoretical failure Individual Models Critical, pathologising models Ambiguous models Partial models Practical failure Attitude of SDA worker In working with FNM To enlist family and network support for change

ADF Perspective Stress-strain-coping-support model. Stress –living in a family where someone misuses alcohol or drugs is commonly very stressful Strain- Family members who are concerned are likely to show signs of strain including physical and psychological ill-health Coping-Family members will seek to understand what is going on and what to do about it Support from others -These members can be help or hindered depending on how other people react

Contrast with other Models Family/affected others are seen differently Places affected others, and not the substance user at the center of interest Focus on present circumstances and actions Focuses on the needs of the affected others Provides a model of intervention The perspective of alcohol and drug problems in the family contrasts with some others that have bee adopted in this field. The family is for instance seen differently for instance the view is not based on such family systems ideas that excessive drinking of one family member is likely to be symptom of a more fundumental problem elsewhere that the view of the family in this model contrast from others that have Family members are not seen in terms co-dependency or in a dysfunctional relationship contributing to the abuse of the substance. In fact it sees the family member’s ways of responding as potentially positive than rather than dysfunctional. This model sees the family as ordinary people caught in unpleasant and difficult family circumstancesand struggling, as many of us would and t that They are seen as ordinary people trying to cope with the stress of one of them being addicted try to find ways of understanding and managing the situation.is may have a knock-on impact on Focuses on needs of the family member and the individual using the substance. It is thought that if we develop an inderstaning of the experiences of family members and if we develop better interventions for the focus them. This may have a knock-on impact on the misuser as well. This still however is clearly not the primary focus. Provides a model of intervention as it clarifies the process that it suggesteers go through,d that family memb

Copello, Templeton et al. (5-STEPS) – family member focused Listen non-judgmentally Step 2 Addresses fears and misunderstandings Step 3 Explores responses and coping mechanisms Step 4 Examines available social support Step 5 Probes further help and referral

Our Work So Far Face-to-face delivery where the various health professionals (Gps, Health Nurses, Counselors) were trained to delivery of intervention evaluated. Delivery to special populations (BMEs) was evaluated Whole teams/ organisations were trained and supported to make changes in delivery of services to include or be more focused on the affected other. Self-help manual was later developed, a version of which was tested in a clustered randomized trial in primary care. Encouraging results were obtained at each of these stages

Is this intervention currently accessible to family members? The answer abviously is NO. We have: secured funding from AERC, Obtained ethical clearance from NHS LREC Developed the sight NOW soliciting for you to come aboard in this process

www.alcoholdrugsandfamilies.nhs.uk

Advantage of a web-based approach It would provide an approach to intervention that is currently not readily available. It would be accessible to much wider number of family members. It could be accessed by anyone anywhere in the world. Accord a level of privacy for family members and their relations. Would empower individuals. The timing is flexible enough to fit each individual’s program. It would be accessible to much wider number of family members, than could possibly be provided in/by walk in centres. It could be accessed by anyone anywhere in the world irrespective of physical, geographic or lifestyle limitations. Accord a level of privacy for family members and their relations, Would empower individuals, as they would achieve some sense of power and control over self and their environment which is an important underlying goal of self-help approaches. The timing is flexible enough to fit each individual’s program. This is particularly important to individuals who are either working and therefore find it difficult to get time for treatment for a problem which they cannot adequately justify to employers, or they are living too far from the treatment facility to be able to make full use of it.

Study Phases Self-Help (SH) Manual Transformation Of SH into Web Format Data Collection Ease Appropriateness Pilot /Limited Access Usability Outcome evaluation Analysis Review Outcome evaluation World Wide Web

Outcome Measures The Family Member Impact (FMI) scale This is a 16 item scale that measures the perceived impact that alcohol and other drug use by a relative is having on the family as a whole. Coping Questionnaire (CQ) Assess ways in which family members have over the previous 3 months been coping with the problem drinking or drug taking relative. Symptom Rating Test (SRT) Consist of 30 questions used to assess the extent of physical and psychological ill-health experienced each of them within the past 3 months

www.alcoholdrugsandfamilies.nhs.uk Enter your username and the password that was sent to your email box. Then click on the login button

Self- Help Programme Registration Patient information sheet, privacy policy, informed consent, Demographic questions, Assessment battery, registration Step 1 Step 2 Step 3 Step 4 Step 5 Introduction Examples of Stress Exercise 2 Health Experiences of Family Members Exercise 3 Recap Introduction Exercise 4 More Information on Alcohol/ Drugs Exercise 5a Exercise 5b Recap Introduction Related Issues Exercise 12 Recap Getting Additional Help Exercise 13 REVIEW Introduction Exercise 6 Ways of Responding Exercise 7 Recap Introduction Exercise 8 Kinds of Support My support Exercise 9a, b, c Exercise 10 Recap login to the self-help directly from the home page. Once they login to register they would then need to use a pass code provided by the research team to proceed further in the self-help. The pass-code identifies the level of access that a person will have to the self help and this will differ depending on whether the person a FNM or a health care professional. Irrespective of the pass-code however, when they are granted entry they will be exposed to the information page explaining the nature of the research and confidentiality policy guiding it. They will be required to give informed consent to participate in the research, as well as permission for research team to send them reminders to complete evaluation questionnaire via email, phone, postal address or any other preferred channel of communication. The informed consent form will differ slightly depending on if the individual’s login is through the professional channel or the FNM route. The sessions are designed in such a way that they could be taken in any order that the person desires. He is advice to proceed through each of the stages/modules sequentially; he is however not forced to do so as the program will allow for entry at any level. The program itself will be arranged in five different modules to reflect that of the self – help manual. Sessions will be used to track the progress of the participant through the modules. The cookie files shall not store personal information. If they desire to participate in the computer-assisted self-help intervention are asked to log in. They will then proceed to log in with self generated name and password. Part of the log in requirements will be the provision of an email by which he could be contacted or if he forgets his log in password it may be sent to him. The program will beginning with a screening to see the suitability of the individual to use this application, next the individual’s consent will be sought online in two stages. The first will be to participate in the research; this will include potential risks, benefits, and right to withdraw from treatment. The second stage will contact procedures, which will allow for participant to be contacted or reminded by email or any preferred means when the time for filling in the second/or possible third assessment format is due. Where the participant does not consent he will not be allowed access into further stages of the self-help. When log in for the first time individuals will be required to complete a number of self-report questionnaires. When they log in on subsequently they will be allowed to proceed straight to the module of the self-help that they desire to visit or work through.

Results

Demographics for WWW participants Variable % Gender Male Female 11 (15.9%) 58(84.1%) Age of Family Member Mean=44.64 (10.07) Age of User Mean=39.09 (13.29) Relationship with User Father/Mother Spouse/Partner Brother/Sister Son/Daughter Other 4.3 47.8 5.8 27.5 14.5 Gender of User Main Substance Consumed by User Alcohol Drugs Both 62.3 17.4 20.3 Duration of Problem < 1Year 1-2 Year 3-5 Years 6-9 years 10 years 10.1 21.7 13.0 50.7

What family members say ”The programme helps challenge me to think about the specifics of what I think or feel about the issues. Providing answers to questions asked in the programme caused me to pause and think how I might feel or put into words. It is kind of difficult to put into words but it was generally positive”. “It makes you feel supported that somebody knows what you are going through” ”This (web-programme) makes available so much needed social support that is just not always available with every door being closed on you wherever you go. Just knowing that there is something out there is helpful”. ”The programme is quite easy to use, intuitive and the instructions and pretty straight forward”. ”It was a therapeutic experience online for me”.

Feedback continued ”In using this site you get the feeling that you are not alone that someone understands what you are going through. Further more that, the site went into how you feel and really makes you open up, it is nice to let it all out. It does not present you with a ‘yes’ and ‘no’ situation but ask you questions and requires you to think further than this, which is actually quite revealing”. ”It helped me to see that as a person I needed help”. ”Having it online is obviously the way to go as many things are now available online and people search the net for a lot of things, and as many more people are having access to the internet finding a way to provide that on the internet is a way forward”. ”It made you feel you were still a person…that you have rights….that you have a life to live as well”.

Include Social Networking, & Dating Functions?

Where do we go?

The results of this work so far points to the fact with slight modifications to this web-based programme, one can conclude; as stated by one of the family members that: “Having this (support) online is obviously the way to go”

ADDICTION AND THE FAMILY (ADF) GROUP The University of Birmingham/Birmingham and Solihull Mental Health NHS Trust Substance Misuse Service Akan Ibanga Alex Copello Claire Hampson Jim Orford The University of Bath Mental Health R&D Unit/Avon & Wiltshire Mental Health Partnership NHS Trust Lorna Templeton Richard Velleman and other colleagues who have been part of this group over the years.