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Good afternoon, ladies and gentlemen,
Thank you very much for your very kind introduction.
I am very proud to be here on this special session. My name is Tomofumi Oka. I'm a professor of social work at Sophia University, in Tokyo, and I have been doing research on self-help groups for over twenty-five years. I have been involved with self-help groups for various people, including alcoholics, parents of ill children, and family survivors of suicide. Today, I would like to use my many years of fieldwork experience to discuss "The power and potentiality of peer-led self-help groups in comparison with professional-led support groups." |
First of all, I would like to summarize the main point of my presentation:
Nowadays, many people are becoming more and more interested in self-help groups, which is a very good thing. However, I believe many people do not fully recognize the true power and potentiality of self-help groups. And what is more, very often they do not distinguish between self-help groups and support groups. That will be the main point of my presentation. |
Now let me give you a brief outline of what I will be talking about.
First, I will discuss the reasons why self-help groups are now getting much more attention from human service professionals than in the past. Next, I will give you some definitions of peer-led self-help groups and professionally-led support groups. After that, I will discuss the limitations of support groups and then I will talk about the power and potentiality of self-help groups. Finally, I will discuss the common error made by professionals who want to utilise the power of self-help groups.
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So, beginning with the first question: why have so many people recently become interested in self-help groups.
I think there are three reasons for this:
First, in many countries there has been a serious decrease in the financial resources that are available for medical and welfare services. This is particularly the case in countries like Japan that have a rapidly ageing population. As the population ages, we will need more and more services to meet the needs of the increasing numbers of old people. Soon it will become impossible for medical and welfare services to cope with the demand for services without a huge amount of voluntary participation. Self-help groups will be at the core of this voluntary participation.
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The second reason for the new interest in self-help groups is people are now realising that users' involvement is crucial to improving the quality of medical and welfare services.
Also, people are now learning that people should have the right to decide how to live with chronic diseases or disabilities. People are no longer seen as the mere recipients of services, but users and self-advocates for improving medical and welfare services.
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The third reason is, more and more people with chronic diseases are able to live in our communities rather than in institutions. This means that more people are taking responsibility for managing their own health care. Self-help groups are now expected to take on a more important role because they can provide people with good opportunities to exchange their experiences of living in the community, and to learn skills for self-care and self-management.
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In other words, we have three kinds of urgent needs in terms of self-help groups:
First, we need additional resources to cope with the ageing society. Second, we need self-advocacy organisations to give people the right to have a say in their medical and welfare services. Third, we need systems to help people with chronic health problems take care of themselves in the community. Of course, these three needs are catered for, not only by self help groups, but also by support groups, which is probably why many professionals confuse self-help groups and support groups. So we will go on to the next question: What is the difference between self-help groups and support groups? To find the answer to this, let's have a look at some definitions.
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In 1997, Linda Farris Kurtz has given us a classical definition of self-help groups and support groups.
Let me read you this quotation from her book:
A self-help group is a supportive, educational, usually change-oriented mutual-aid group that addresses a single life problem or condition shared by all members. Its leadership is indigenous to the group's members. Participation and contributions are voluntary. Professionals rarely have an active role in the group's activities. Boundaries include all who qualify for membership by having a problem, situation, or an identity in common with other members.
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Now, this is what she has to say about support groups:
Support groups meet for the purpose of giving emotional support and information to persons with a common problem. They are often facilitated by professionals and linked to a social agency or a larger, formal organization. Membership criteria often exclude individuals not served by the sponsoring organization.
Generally speaking, most scholars in the world studying self-help groups agree with these definitions. However, in Japan, many professionals do not distinguish self-help groups and support groups. Let me give an example.
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In Japan patients who need chronic care can join self-help groups and support groups, both of which are called "kanja-kai," which can be translated as "patient clubs."
Kanja-kai (patient club) is already firmly established as a Japanese word. Actually, while I was preparing for this speech, I put kanja-kai (patient club) into Google.com as a key word, and I got over six hundred thousand pages. This shows that the concept of patient club is well established in the Japanese society. But because it has two meanings, when a patient says, "I joined a patient club," we don't know whether he or she belongs to a self-help group or a support group. Now hearing me say this, some of you might be asking yourselves, "What's wrong with that? Does it matter?""
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Well, yes, I think so. I have to admit that it is not so easy to draw a sharp line between them because self-help groups and support groups have a lot in common. But I believe it is very important to distinguish at least theoretically between self-help groups and support groups. Unfortunately, this theoretical distinction is now becoming rather obscure.
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For example, in Japan they have recently amended the laws governing certified social workers and they have introduced a new social work curriculum.
Under this new social work curriculum, self-help groups are considered to be a method of social work using group dynamics. I think this understanding of self-help groups is wrong. I think it reflects the fact that many Japanese professionals cannot tell the difference between self-help groups and support groups.
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So, the next question: why is it important to distinguish between self-help groups and support groups?
My answer is simple: Because self-help groups have a lot of strengths that support groups don't have. Please don't misunderstand me when I say that. I don't mean that support groups are inferior to self-help groups. What I want to emphasise is that these groups are different, and we should be aware of the limitations of support groups.
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The limitations of support groups are, according to my observation, mainly caused by the special relationship that exists between a support group and their sponsoring professionals.
In this presentation, I would like to call that special relationship "an encapsulated relationship."
By "encapsulated," I mean three things:
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First, an encapsulated relationship is closed to outsiders.
Support groups are encapsulated because they are composed of users of the service of the sponsoring professionals. So, for example, a patient who does not use a hospital, cannot join the support group sponsored by that hospital. I often heard that some doctors do not like to introduce "patient clubs" to their clients, because they are afraid that the patient club might encourage their clients to go to the club's sponsoring hospital.
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On the other hand, some doctors take advantage of the closed relationship encapsulating support groups, and they use the support groups within their organization to collect new patients.
In other words, support groups are a good tool for doctors and other professionals to retain patients for an extended period.
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Second, the encapsulated relationship between the support group and the professionals works only within the sponsoring organisation.
In other words, the support group members provide mutual help to the other members of their group but they don't work voluntarily to help others outside their group. Likewise support groups rarely work with other support groups outside the sponsoring organization, so clearly it is very difficult for them to take social action and to lobby for change within society.
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Third, the encapsulated relationship is strictly tied to the relationship between professionals and their clients.
This is very understandable, because generally speaking, support groups have their meetings within the premises of the sponsoring organisation, and the group members see the same professionals before and after joining the support group. In other words, in an encapsulated relationship, group members are most likely to play a traditional patient role. Additionally, in Japan, the relationship between professionals and group members is likely to be a vertical one: with the professionals well above, and group members well below. This kind of vertical relationship between professionals and their clients is more common in Japan, than in western countries. I guess that this might be the case with many other Asian countries, too.
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To sum up, first an encapsulated relationship is closed to outsiders; second, it does not extend out into the wider community but focuses inward, and third, it often inherits a hierarchical structure from the previous professional-client relationship.
After considering these features of support groups, we can now compare them with self-help groups and better understand the power of self-help groups.
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If you recall, the first feature of support groups is they are closed to outsiders. In contrast, self-help groups are open to anyone who shares a problem or a condition. Besides, many self-help groups advertise their leader's or their office's telephone numbers through the internet, newspapers, TV and radio so their groups get many telephone calls from the general public. In fact some groups' leaders receive calls from early morning to late night. So they have to be very dedicated volunteers. Because of this strong emphasis on volunteerism, there are no clear boundaries between members and non-members in self-help groups. Regardless of whether they are members or not, anyone who shares a problem or a condition will be helped if they turn to a self-help group. As a consequence, self-help groups have a greater social presence and greater social influence than support groups.
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I also mentioned that because of their encapsulated relationship, support groups tend to focus inwardly within the sponsoring organization whereas self-help groups reach outward.
Japanese self-help groups often say, "There are 'fellow people' who we have not yet seen." They are always looking for these "fellow people" who share the same problems and are suffering from the same disorders in isolation and in loneliness. Hence, leaders of self-help groups are very active volunteers who are ready to contribute a great deal to society.
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Additionally, unlike support groups, self-help groups can easily work together with other groups. They can initiate social action and put pressure on the government to improve their conditions, and they can fight against prejudice and discrimination in society.
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The third feature of the encapsulated relationship of support groups is they take over the hierarchical structure of the professional-client relationship. This feature can create a serious obstacle to the development of support groups for several reasons: Firstly, patients with chronic diseases often want to consult with professionals who have different kinds of expertise. These professionals might include various medical specialists, psychologists, nurses, clinical social workers, community workers, elementary school teachers, sales persons of wheelchairs, and priests. However, it is usually difficult for support groups to invite these professionals to their meetings unless they are working for the sponsoring organisation or unless they are introduced by or through the sponsoring organisation. On the other hand, self-help groups are completely independent from any particular group of professionals, and so they can freely invite whoever they want to their meetings.
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There is another point I should stress about the encapsulated relationship and that is its vertical structure. Under the hierarchical structure of the encapsulated relationship, support group members are very unlikely to be able to develop any way of thinking that falls outside professional frameworks. This is a very important issue, especially for the people like Asians who are not living in a western-type culture. Why is this so? Because modern medical and professional theoretical frameworks have actually been developed in the West and many of the concepts and ideas in these professional frameworks are closely related to Western philosophy.
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A good example of this is the concept of time. In Western philosophy, time is linear; time has a beginning and an ending. In Japanese philosophy, like many Asian philosophies, time is circular; there is no beginning and no ending of time. Modern professional frameworks are basically built on linear time. This means that professionals might show their patients a recovery model based on linear time, but many Japanese patients live within circular time. Japanese self-help groups can help their members develop their own model of living using circular time. For example, some Japanese alcoholics' self-help groups do not use "steps to recovery." Also, some Japanese bereavement self-help groups refuse the concept of "grief stages," which professionals like to apply to their clients. Both of these self-help groups function within a concept of circular time.
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To sum up, unlike support groups, self-help groups do not need to follow professional frameworks. Fortunately, they can develop their own ideas about how to live with chronic care, based on their indigenous concepts.
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Finally I would like to tell you a little bit about the common error made by professionals who want to utilise the power of self-help groups.
Many professionals try to start new self-help groups among their clients, rather than work with existing self-help groups. These professionals encourage their clients to take the initiative and lead their self-help groups, but they often find that the groups are not very active. Whenever I am invited to talk to professionals about self-help groups they ask me the same question: "How should we motivate patients to lead their self-help group The members are too passive and they have very little confidence in themselves. They are always waiting for us to help them."
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My answer is:
"We can't claim that self-help groups are helpful for everybody. Some people prefer professional help to self-help." "Also, please be aware that people who seek professional help first are not necessarily the best people to initiate a self-help group." "Instead of organising a new group, why don't you make contact with existing self-help groups in your patients' community"
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However, I know, professionals often find it hard to get along with self-help groups, because they belong to quite different cultures, and have different values and different beliefs.
For professionals, meeting self-help groups is meeting people with different cultures. So, that can be challenging but also exciting.
In conclusion, I would like to emphasise once again the great power and potentiality of self-help groups. I hope you will build a trusting relationship with self-help groups by respecting their cultural values. Thank you very much for your attention.
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