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There was always an intention to work with families, but it wasn’t until an extra ingredient appeared that this work got going. Caroline, a nurse, had completed a PhD on stigma of mental illness and the family, and joined the Concurrent Disorders team with a strong research interest. With the long-standing interest that Wayne, a social worker, had in working with families affected by the complex, confusing and distressing problems that are called concurrent disorders, the plan to do some work in this area emerged.
Developing Education and Peer Support Options for Family Members
We wanted to do something to support the families of clients of our own program, but we also wanted to evaluate the work, and use the information to promote the merits of doing this work across a number of environments. So we decided to submit a research protocol, which was approved. There were three phases to the initiative. The first was a focus group for concerned family members, where we were strongly encouraged to provide better information, education and create opportunities for peer support for family members. The second was to pilot a six session peer support and education group, which led to strong endorsement and the recommendation. Again we learned how important it was for family members to have access to reliable and useful information about addiction and mental illness, and how valuable the opportunity to meet together with members of other families and share concerns was for participants. They advised us to lengthen the meeting time from 90 minutes to two hours, and to extend the number of sessions offered beyond the six we offered. They were instrumental in identifying topic areas for inclusion in the education and support materials that we developed.
The third phase in our project was more demanding – and even more rewarding. Caroline developed a research design that would allow us to compare peer support and education groups to a manual that contained the key education materials. Participants would have to agree to be randomly assigned to either a peer support group that met weekly for 12 weeks or to get a copy of the manual we were developing and to use it on their own.
At the same time, colleagues in CAMH’s Provincial Services heard about our project and asked if we would support the project being extended to another community in Ontario. Since our goal has always been to develop knowledge that could be shared and used to provide support to families more broadly than our own environment, we were excited by this opportunity. They surveyed communities across the province for indications of interest. Amazingly, 20 communities asked to participate. Resource limitations meant that only one community could join the research. Elmgrove, a mental health agency in Brockville, was selected. And we made a promise to the other communities to visit them and share the news as it emerged from our project.
The research involved recruiting 38 participants, 20 in Toronto and 18 in Brockville. They were randomly assigned to receive the manual only (no r support group) or to the manual and peer support group. We hypothesized that the peer support group plus manual condition would have better results than the participants who got just the manual alone.
Caroline designed the research to measure both quantitative and qualitative data. Participants were interviewed before beginning the study - they completed a set of forms and measures, and had an extended interview, in Toronto with Caroline, and in Brockville, with our project collaborator, Elaine Mason. After the groups ended (or three months later if they had the manual only), participants again completed the forms and were interviewed by Caroline and Elaine. All interviews were tape-recorded, transcribed and analyzed by Caroline over a period of 2 years.
We were interested in two key questions: did participants benefit from participating in the project, either by attending the education and peer support group, or by reading the manual on its own. The evidence, both from the scores on the scales they completed and from their comments, indicated that participants in both arms of the study found what they got to be of value and of benefit. The second question was, did the participants that attended the support group do better than the participants who got just the manual. The answer was that there was a trend difference in favour of those in the peer support group reporting stronger effects, but that difference did not meet the test of statistical significance. That means we cannot conclude on the basis of this one study if manual plus support group is better than the manual alone in being helpful to members of families affected by concurrent disorders.
That finding, that both interventions produce a measureable benefit, was a very validating result. That meant that we with confidence offer either of them to family members and expect that it would be of use to them. There are limitations to this modest study, of course. The sample size was small. There were only two points of comparison, at the start and three months later. If we had collected data for a longer period, would we have seen a clearer difference between the two conditions? We are committed to further work in this area and in time hope to have answers to that question.
From Knowledge Development to Knowledge Sharing
One of the activities that we were involved in as we began to get information from our project was to visit regions of Ontario and share our findings with them. We would offer an afternoon workshop for professionals who were interested in the issue. And in the evening we attended community forums where family members and the public could attend. These were organized by our colleagues in CAMH’s Provincial Services, and they were free, both the workshops and the forums. They were well-attended, and we were always impressed by the interest professionals had in better addressing the needs of family members and from the family members themselves in their need for better access to information and support.
Over a period of two years, we travelled from Thunder Bay to Ottawa to London, and places in between to share our work and to dialogue with professionals and family members about the need to provide better services and supports not just for people with co-occurring addiction and mental health problems, but for their families as well. We found these experiences to be very validating of the need and impact potential of this work, and we made connections with a wide set of helpers and family members who have been a key part of our continuing. We will talk about that shortly, but let us first tell you about another key development.
Creating “A Family Guide To Concurrent Disorders”
Since we had developed a manual in this project which family members had used and found to be useful, we began to work with the product development and publishing arm of CAMH to turn the manual into a book. Fortunately, a product developer, Caroline Hebblethwaite, had joined our project early on. She helped as we prepared the original manual, and now she took charge of the task of turning the text we had created into a form that could be published. Her role in this project is mainly unsung, although we make a point of singing her praises at every opportunity, so here we go again. But mainly she is content to work behind the scenes to make education products of the highest quality. We were able to print 500 copies of the first draft of the book and for six months had clinicians and family members work with the material. Their feedback allowed us to build the final product, “A Family Guide to Concurrent Disorders,” which was released in November 2007. It can be purchased from CAMH by ordering it online or over the phone.
Preparing A Facilitator’s Manual
The experience of preparing and leading the twelve group support sessions had taken a considerable effort and had allowed us to learn a lot. We agreed to keep a log of our experiences and hold on to materials and tools we used in conducting the groups. From those we built another manual – this one to assist anyone who might want to facilitate education and support groups for family members. That is also available on CAMH’s website as a free resource that can be downloaded in PDF format.
Building a Community of Practice to Support Families Affected by Concurrent Disorders
In a way, in terms of the project we set out on, we had completed our work. We had conducted a successful research project, and we had two products that were proving to be useful to family members and to professionals who wanted to provide supportive services for family members. But we had an even greater vision. With Wayne taking the lead on the knowledge exchange front, we set about on yet another leg of our family concurrent disorders journey. To do this was, if anything, enhanced by the positive experiences we had already experienced - especially considering the inspiring effect that the many family members we had connected with already had had on us!
Wayne felt that it was important to support the dissemination of this work not just by random acts of encouragement and promotion, but through a systematic approach. Again, having an active collaboration with our Provincial Service colleagues who wanted to increase the number and quality of services that addressed concurrent disorders, proved to be of great advantage. Working with Monique Bouvier (who had the lead role there) and her colleagues across the province, we proposed setting up a community of practice to support families affected by concurrent disorders. We developed a plan that would allow us to identify and work collaboratively with clinicians and agencies around the province that were willing and able to do this work. Having the family CD materials developed, we wanted to make them available and to support their use in communities across the province.
A ‘community of practice’ is a group of like-minded people who share a passion for and a commitment to an area of work
In any town or city, there are a few people who really want to do this work. In their own location, they are just a few. But when you connect them with like-minded people across the province, you have a network! And that is what we wanted to set up to support families affected by concurrent disorders. Again our colleagues in Provincial Services surveyed interest. They found that 10 different communities wanted to participate in a training event we provided in September 2008, and another nine who participated in a second orientation we offered in February 2009. To participate, and be eligible for the funding to attend the training, not only did addiction and mental health workers have to commit their own time, but also their agencies had to sign an agreement to offer at least two family education and support groups in the two years after the training. Already, some of these agencies have done this. We built in an evaluation component of community partners both to track how family members are doing and what the group facilitators are learning. The preliminary feedback is just as positive as with the original groups and the others that have been subsequently offered at CAMH, thanks in particular to our colleague in Concurrent Disorders Capacity Building, Carol Parker, and her co-facilitators.
The Community of Practice keeps people connected through a list-serv, through an information portal where training materials and literature are shared, through regular telemeetings, and through webinars and other educational events. Clearly, access to technology is a key ingredient in making this possible, and in keeping a diverse group of practitioners spread across the province in close and active contact with one another. Having Monique coordinate these activities is another essential ingredient – good ideas need good implementation to produce good effects.
Building the Evidence Base and the Knowledge Set for Supporting Families
We have a continuing interest in building knowledge and practice in this area. Last year, lead by Caroline, we submitted an ambitious research proposal to the Canadian Institute for Health Research (CIHR). We were not successful, although the feedback was supportive and encouraging. We were aware that their process is highly competitive and that only 10% of applications are funded. We are also aware that this area of research is new and underdeveloped, so that an important task is to educate policy makers and funders, and the general public, about it. We also want the research we do to have both qualitative and quantitative aspects (mixed-methods). In searching the literature for our first study, we came to the conclusion that ours was the first study in Canada in the area of families affected by concurrent disorders, and only one of a small number of publications internationally.
Dr. Caroline O’Grady (Principal Investigator) is currently seeking family member participants for her new pilot study that will evaluate the usefulness of a family concurrent disorders support / educational group offered over the Internet. This 12-week, professionally facilitated, peer support group will be strictly anonymous and confidential. Participants will be assigned a confidential Username and Password (that does not contain their real names or any part of their real names). This is to protect the safety and security of all family members who join this study. The educational component of this group will cover such topics as mental health problems, drug and alcohol problems, how mental health and drug/alcohol problems interact with each other; the impact of concurrent disorders on the family; family recovery; stigma; crisis and emergency; relapse prevention; family member self care and more!
 Please contact Caroline of you are interested in this study and please feel free to bring this new study to the attention of others who might want to participate. (Please see the attached study flyer with Caroline’s contact information). We are excited by the opportunities that the Internet can provide in connecting people and providing services in ways that overcome the challenges of getting everyone together at a set time on a set day for a set number of weeks. The Internet is another way to provide family education and support groups and we hope will eventually be offered as another choice for family members, along with the manual alone, and face-to-face groups.
Our view is that what families need are helpful options, and that for a variety of reasons, at particular points in time, family members a range of choices to draw from. Their concern and commitment to supporting their own families, including the family member(s) with co-occurring addiction and mental health problems, has inspired us in this work. We see ourselves as partners with them, and we value and respect their expertise and wisdom. We realize they are on a hard journey. We know that family and social support is probably the single most important factor in better outcomes for people with concurrent disorders. We have come to learn that recovery is a journey that families are on as well as the individuals with the diagnoses of co-occurring addiction and mental illness.
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