An International workshop for collaborators and potential collaborators involved in research and action using the 5-Step Method for family members affected by relatives’ addiction problems

Tuesday 8th and Wednesday 9th November 2011, Park Inn hotel, York, England

Introduction to the report (Jim Orford)

“The workshop was a significant event in the development of AFINet, in fact it was at that meeting that the idea was suggested and approved by those present.”

Detailed report of the proceedings

The meeting began on Tuesday morning with introductions. We were sorry to learn that, despite his best efforts, Andrew Zamani from Nigeria had been unable to obtain a visa in time and was therefore unable to attend. He sent his best wishes for the meeting and reaffirmed his commitment to developing 5-Step work in his country. Those attending the workshop sent him their best wishes.

The English Alcohol Drugs and the Family (ADF) team opened the proceedings by making three short presentations about 1) the theoretical background, the 5-Step Method, and the English programme of research to date (Alex Copello); options for 5-Step research – understanding, intervening, disseminating, and/or influencing policy (Richard Velleman); possible models for international collaboration (Lorna Templeton).

The whole of the rest of Tuesday was devoted to each of the other country representatives describing relevant research, evaluation and development work taking place in their countries, either conducted by themselves or by others. This was followed by questions and discussion. Wednesday morning was devoted to country representatives making brief statements about plans and prospects for relevant work in their countries. This was followed by detailed discussions in small groups, followed by further discussion of plans including potential inter-country collaborations.

The following is a brief summary of the present position and future plans in each country.

Mexico (Guillermina Natera)

Guillermina described a project evaluating the use of the 5-Step Method in an indigenous community in central Mexico which showed family members’ symptoms reduced compared to a control group (those who declined to take part but agreed to complete questionnaire assessments) at one year follow-up. The 5-Step Method goes under a different name in Mexico (The Family Method) to avoid confusion with 12-Step approaches, but is in all important respects the same. Measures included the CES-D, a measure of depressive symptoms which also allows international comparisons to be made. Qualitative data provided evidence of increased awareness of the effects of excessive drinking by relatives and of transformations in women’s lives (Guillermina provided some very interesting examples). In answer to a question Guillermina said that domestic violence, which was common, showed a reduction following the intervention – this led to discussion and some doubt about whether that would necessarily always be the outcome in all countries. A further important feature of this work has been an examination of its cost, which is modest, in relation to its effectiveness, particularly in reducing depression. There were particular challenges to doing this work with indigenous women, including poverty, lack of transport, patriarchal families and the fact that wanting men to stop drinking and women thinking of themselves were counter-cultural. The translation of materials into an indigenous language is a particular challenge, and the Mexican group has a lot of experience of how this should be done which they can pass on to others if required. A particular feature of the project was the development of culturally appropriate drawings to illustrate eight different ways of coping.

The Mexican group has also made a lot of progress in developing an internet based 5-Step training for a range of ‘orientadores’ – largely health and social professionals. They are now part way through a two-year project in which they are using it to train 2000 people in 35 centres across the country. Guillermina would like to do a controlled randomised evaluation of the internet training and has applied to a Canadian body for funding to evaluate the effects on both trainees and family members. She also wishes to continue to develop the cost effectiveness work with the indigenous population. She expressed interest in the Social Support and Hope questionnaires used by the English group, and in the short questionnaire being piloted in England and New Zealand.

New Zealand (Trish Gledhill and Helen Moriarty)

Trish and Helen described the policy background in New Zealand. Although addiction is high on the policy agenda, work with affected families is largely secondary apart from the Kina Trust and Al-Anon. The Treaty of Waitangi, which places an obligation to collaborate with Maori people and to protect and respect their culture is of great importance, as is the development of Kaupapa Maori research (by Maori, for Maori – Trish and Helen have a relevant report on this). It is important, however, not to frame addiction as ‘an indigenous problem’. Other minority groups, although smaller, are also important. It is important that ways of working are developed ‘bottom-up’ and not simply imported from another culture. Important issues are the extended family, the role of community elders, and of spirituality. Trish and Helen described tinkering with the 5-Step Method in the development of their Living Well programme. They suggested, for example, that there might be six or seven steps rather than five, including the making of particularly hard decisions (‘hard calls’) which led to interesting discussion. They say they have not really yet done any robust research on effectiveness, but a qualitative study has led to a report (Moriarty et al, 2010 and a full report). They have been attracted to using the concept of resilience but have so far found this problematic (most family members when interviewed appeared not to be demonstrating resilience). They are also aware that Susanna at CADS is helping to pilot the short form questionnaire which the English group has developed.

Amongst their plans for future work is the application of the 5-Step Method to a national telephone helpline which has 20 minute opportunities to help affected family members. They have had 5-Step training in the past but this needs repeating and evaluating. They would like to suggest using this training and then evaluation as a 2-year pilot for an international project. They would wish to train all the helpline’s staff in 5-Step, and then monitor the use of 5-Step.  Challenges which they would like our help and support on include a) how to deliver 5-Step within a 20 minute phone call and b) how to evaluate its use in such a phone call.  A first step would be a letter from the English group to Paul Rout of the helpline, inviting him to enter into negotiations with Helen and Trish with a view to the helpline joining in this pilot. Beyond that they would like to conduct an evaluation of the use of the 5-Step Method, using some objective measures in addition to self-report questionnaires. They will also liaise with Susanna at CADS over the use of the short assessment form. They think it possible that New Zealand funding might be available to support some of their plans.

Northern Ireland (Ed Sipler and Lorna Templeton)

The Hidden Harm agenda (about effects on children and ways of helping them) is prominent in policy thinking in Northern Ireland and affected adult family members get relatively little attention according to Ed. Services are delivered in five Trust areas with little cross-working between them. Ed and Lorna described a project that is well advanced, piloting an application of the 5-Step Method for adolescents down to 12 years old including those whose parents have mental health problems or complex combined addiction and mental health problems. The evaluation, led by Lorna, is qualitative at this stage. The service in which Ed works provides events and materials for affected family members of all ages and an application has been made for funding to put in place an adult service using the 5-Step Method, using the short form questionnaire as an assessment.

The outcome of that funding application to support the adult work will be known in March 2012. Also, after the completion of the pilot adolescent project, the plan would be to carry out a larger project with adolescents with a longer follow-up and quantitative measures. A longer term aim is to mainstream the use of the 5-Step Method. That led to support from others for that idea but also caveats about the need for legitimacy of that work in mainstream agencies and the importance of good supervision. Other aspirations in Northern Ireland include the application of the 5-Step Method in maternity services, the development of a web-based version, and inclusion in GP training.

Nigeria (Andrew Zamani, delivered by Akan Ibanga)

Nigeria is a country with a high rate of abstinence from alcohol but also a high rate of heavy occasion drinking, the latter more common amongst older than younger men. There were large regional differences, with drinking more prevalent in the South-South region than in the North-Central region. Extended families were more the norm so that more family members were affected. Psychiatric services and relevant NGOs and private agencies are very thin on the ground. Only one agency –Aro – is family oriented, requiring a family member to accompany a client. The other relevant site for family work is hospitals where it is the norm for family members to be required to attend their relatives, bringing food, etc.

Akan was of the view that an important first step in Nigeria would be to carry out a Phase 1 study of the experiences of a sample of affected family members and an examination of the feasibility of undertaking 5-Step in Nigeria, before considering proceeding to an intervention study. He will be visiting Nigeria in December and will meet with Andrew and will also discuss possibilities with Isidor Obot by phone. Funding from outside Nigeria would almost certainly be necessary. Akan also mentioned Masters level students at Andrew’s University as a potential resource.

Uganda (Kabann Kabananukye)

There are only six rehabilitation alcohol and drug centres in Uganda, five of them private, and all in Kampala. There is no effective involvement of family members (Kabann described one very large group in which family members had been involved). There was a great deal of stigma about both mental illness and addiction and concern about the influence of the alcohol industry on alcohol policy. Kabann mentioned cross-country African studies of tobacco control (which his centre in Uganda was leading) and of mental health and poverty.

Kabann thought that the Ugandan Minister of Health would be supportive. Relevant would be both a Phase 1 study (which might be the subject of a Ph.D.) and a 5-Step intervention study in which the trainees might be village health workers, voluntary project counsellors, nurses, or religious leaders and their wives. An investigation of urban-rural differences would be also of interest. Almost certainly any project would need to be funded from sources outside the country. Kabann would also explore funding from the same sources which have funded HIV work in Uganda. Undergraduate student dissertations was another possibility. The next step is for the English ADF Group to send Kabann estimated costs for two of the group (Akan and one other) to travel to Uganda for one week to train people in the 5-Step Method. Kabann would then draft a proposal for a 5-Step pilot to be carried out in two areas.

Kabann and others suggested that we might get five linked PhD studentships, one each in Uganda, Brazil, South Africa, Chile and Nigeria, to carry out a linked international project, of either Phase 1 or 2 type.

The Irish Republic (Megan O Leary)

Megan described the background and history of the Family Support Network of family support groups throughout the Republic and Northern Ireland. The philosophy is firmly that of peer led support, and emphasis on improving outcomes for family members themselves and on ‘living with substance misuse’ rather than ‘living with the substance misuser’. There are a number of reports from the network including one by Megan about the intimidation of family members, and a DVD made by fathers of sons and daughters with drug problems.

They have only recently made contact with the English group and funding has been agreed for an initial round of training of network members, with an evaluation. She anticipates a high level of interest but also challenges such as record-keeping. One trainee should be from the travelling community, an important minority group in the Republic. Megan also expressed interest in the use of 5-Step in telephone counseling, as something applicable to the Irish Republic.

South Africa (Sonja Pasche)

South Africa has a population of about 50 million, with an estimated 2,900,000 people with alcohol or drug problems (and therefore an estimated 5,800,000 affected family members if an average of only two are affected). It has been estimated that 25% of social work cases are due to alcohol or drug problems. The Western Cape area, one of huge social contrasts, has a binge drinking culture, the highest rate of fetal alcohol syndrome in the whole world, and currently a large methamphetamine problem. Sonja, in a project in Soweto, involving groups, found a number of themes including ‘end of a dream’ (parents often had little due to apartheid and had placed high expectations on their children), fear (e.g. of threat by users), and religion as a means of coping.

Sonja thought it would be necessary to keep the work small for now, possibly including validating the questionnaires and carrying out qualitative interviews. It should probably be confined in the first instance to the Greater Cape Town area, with specialist NGOs the way in (and possibly by recruiting helpers from each township community who would facilitate access to each community). There would be a number of challenges, including the need to translate questionnaires into two other languages – Afrikaans and isiXhosa, distances of travel, literacy problems (she could see the relevance of the Mexican work using drawings), poverty, lack of choice and safety issues for family members, and the limited numbers of and burnout for staff. The fifth step of the 5-Step Method could be a problem since there is often nowhere to refer people to. The next step is for Sonja to talk to her professors (Dan Stein and Bronwyn Myers) about the possibility of her Ph.D. being devoted to these issues, and also to draw in her colleague Katherine Sorsdahl, and someone from the Medical Council.

Brazil (Fatima Rato Padin)

Fatima and her group have carried out a questionnaire study with a convenience sample of 500 affected family members. Fatima presented results from the study. Marijuana, cocaine, alcohol and crack were the most important drugs in that order (crack use by young people in ‘crackland’ neighbourhoods was currently a priority). It was clear that family members had on average taken a long time to seek help. The sample was largely upper-middle-class, probably because recruitment was via private health or churches in better-off areas. They were now planning a similar national study with a more representative sample of 3000 family members.

Fatima would welcome advice and support with the planned national study, including help with analysis, and advice on translation and back-translation, and sampling. A qualitative study with a small sub-sample might be possible in São Paulo. The commission had also been granted for a study of the 5-Step Method, with 50 family members, also to be carried out in São Paulo.

Chile (Jeannette Wilkes)

Jeannette was just about to go to Chile for a study period in Santiago. She will be endeavouring to make contacts with a view to promoting a quantitative and qualitative Phase 1 study, probably via NGOs. She would liaise with Guillermina Natera. Sonja would send her the questionnaire which she had sent around to agencies in South Africa. Jeannette will be embarking on a Ph.D. from May 2012 and, although it may be a requirement that the work needs to be done in the UK, there is a possibility that this area might be the topic and that Chilean data could play a part.

Italy (Richard Velleman)

Richard reported on the programme of research carried out in Italy with Catarina Arcidiacono, Alex Copello and others, involving a Phase 1 study in three regions and an evaluation of the 5-Step Method in Naples. The great importance of the family in Italy came out: the highest levels of engaged coping and lowest levels of withdrawal coping of any of our study samples were found. Although the study confirmed the positive changes in coping and symptoms found in other studies, Richard pointed out that many of those trained did not succeed in recruiting family members despite being a small, committed group of all those who were offered training. Although the ADF Group was no longer directly involved, we understand that more than 1000 professionals have now been trained in Italy in the 5-Step Method, and that a roll out for routine GP work is planned based on the decision to use only the first two steps in general practice followed by referral on.

Some General Issues

The need for self-help materials for low/non-literate populations.

The importance of taking into account effects on the extended family and the wider community.

The problem of identifying affected family members.

The problem of funding work with family members which may be seen as ‘extra’, and sustaining it.

The need to assess longer term outcomes, resilience? life transformations?

The accreditation of 5-Step work.

Collaborating and Keeping in Touch

A number of bilateral contacts were established during the workshop. The English ADF Group would be meeting shortly to decide who would be responsible for maintaining contact with whom. We should also establish a means of collectively remaining contacted and able easily to share news and materials. A drop box was suggested as a means of depositing materials and some kind of forum or social networking as a means of communicating. Akan volunteered to explore these possibilities.

An International Alliance or Campaign?

Jim started discussion about the possibility of setting up an international alliance or campaign group for the promotion of research and action and policy change on the subject of affected family members. A number of people volunteered to be involved in preliminary discussions to take this idea further: Helen, Megan, Akan, Kabann, Richard and Jim. The suggestion was made that the Society for the Study of Addiction might be approached for support, for example for secretarial assistance.

International Workshop – participants list