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Questions and Answers
Summarise the aims of your research and its main findings.
The main purpose of my research has been, first, to examine the kinds of organisational problems confronting self-help groups for the parents of ill children; and second, to find possible solutions to these problems. In addition, since this project has involved social work research, my aim has been to discuss ways in which the leaders of the self-help groups can actually lead their groups.
If you look at page 3, you will find a table in which I have outlined what I actually did in this research. You will see that a total of twenty-one parent groups were involved, and that I conducted three sorts of qualitative interviews: namely, informal conversational interviews, focus group interviews, and guided interviews.
My research was participatory action research in the sense that I organised a research team that consisted of some of the leaders of the twenty-one parent groups. On page 113, I have included a field map, which shows the relationships between the research team and the other organisations involved. This research team helped me a great deal with collecting and analysing the interview data, and they also gave me many suggestions on how to formulate the research reports.
During my research, it became clear that the parent groups have great difficulty in finding active leaders, largely because most of their members are either too apathetic, too busy, or they lack the necessary expertise to become active leaders. Even though the groups' newsletters claim that they have a multitude of active members, in many cases this is just a facade. They have to pretend that they are very successful, in order to attract the support of the professionals as well as the public.
The fact that self-help groups are suffering because of the apathy of the bulk of their members is not new, of course, but previous research has usually been based on surveys using only the groups' contact persons. I decided to take a different approach and to use qualitative research so I could investigate the factors that the leaders thought were causing their problems.
From the qualitative interviews, I identified three sorts of accounts. I have named these justification accounts, accusation accounts, and exposure accounts. I have discussed these accounts on pages 220 to 225 in my dissertation.
Justification accounts are accounts wherein the leaders justify the inactivity of their members, by claiming that it is only natural for the parents to be apathetic and to avoid taking an active role in the groups because they have ill children, and they are too busy taking care of them. Accusation accounts, on the other hand, are accounts in which the leaders accuse the members of selfishness, and of being quite happy to reap the benefits of group membership without being willing to contribute anything in return. Exposure accounts are accounts in which the faults of the leaders are exposed. In these accounts the members accuse the leaders of being to blame for the leadership crisis because they actively prevent other members from making a contribution.
From analysing the interview data, I found that the type of account that is given depends very much on the context of the interview. For example, if you take a look at page 251, you will see that justification accounts were presented when the interviewees considered themselves to be insiders and the interviewer to be an outsider. The interviewees didn't tell a stranger about their problems and so they tried to cover up what was going on in their groups. On the other hand, accusation accounts were given during the focus group interviews, when the interviewees talked with one another as leaders who had a lot in common. In this case, the outsiders were the group members, who were not present, and the insiders were group leaders. As for the exposure accounts, towards the end of the research, after I had developed a trusting relationship with the leaders, some interviewees were willing to provide exposés of their leaders' alleged incompetence because, in their eyes, they and I were the insiders, and the leaders, who were not present, were the outsiders. Hence, my research identified three patterns of relationships involving the three types of accounts and the insider/outsider orientations.
One of the main findings of my research, from a practical viewpoint, has been the importance of differentiating between personal fellowship and organisational membership, which I have discussed on page 276. I believe that most group leaders and most researchers on self-help groups have often confused these two things. Every participant in the interviews talked about how pleased they were when they met people who had the same experiences as they had. They all claimed to be colleagues or fellow-sufferers united in the same cause by their shared experience and shared struggle. The leaders seemed to think that this sense of fellowship would automatically lead to a sense of commitment from their members. But this was not the case.
Probably because of this confusion between personal fellowship and organisational membership, the group leaders felt little need to provide "organisational socialisation" to the newcomers. Through this organisational socialisation process, the newcomers would learn how their groups were managed, they would learn a bit about their groups' history, and more importantly, they would learn what was expected of them as far as contributing to the group was concerned. So I believe that the reason why most of the newcomers to their groups were inactive and apathetic was because their groups had had no organisational socialisation processes. Consequently, I found that there were two types of members in the parent groups: active members who take a leadership role, and passive members who play no part in the groups' organisation. There is no intermediate group, no group of ordinary, active members. Hence, to depict the situation the groups find themselves in, I have drawn "an island within a lake". You will find this model on page 268.
Japanese gardens often have a lake, and the lake often has an island in it. People enjoy seeing the island, but few get to go there. In terms of the parent groups, metaphorically speaking, the island is the very small group of active leaders. Just as the island is separated from the garden by the lake, the leaders are separated from the ordinary members of their group. The ordinary members enjoy being helped by the leaders, but few of them want to cross over the divide and contribute to the group by becoming active leaders.
My suggestion to these parent groups has therefore been: that they should provide organisational socialisation to the newcomers; and that they should do all they can to encourage their members to change from being passive and to become more active.
I have described how I started this fieldwork on page 100. First of all, in 1993, a social worker suddenly telephoned me. I had never heard of him, but he had come across my name by reading one of my published papers. He was very interested in my research on self-help groups, because the child welfare agency that he worked for supported self-help groups for the parents of children with intractable diseases, and he was looking for theoretical advisors or researchers. He asked me to meet him.
At that time, I knew very little about groups for parents of ill children. When I was doing my MA course, I had visited some parent groups, and I can remember feeling very disappointed because their groups seemed to be so inactive.
Nevertheless, I was interested in the social worker's invitation, because at that time I was having difficulty developing my fieldwork with self-help groups, who did not seem to welcome researchers like me. So when this fellow contacted me out of the blue and asked me to do some research on his groups, I was immediately attracted to the proposition. As it turned out, the social worker proved to be very helpful. Not only did he introduce me to the right people when I wanted to start conducting conversational interviews with the leaders of the parent groups, but also he was a friendly, relaxed sort of person and he helped break the ice when I had my first meetings with the group leaders.
In the beginning, the purpose of my interviews was to trace the development of these groups. I had two reasons for doing this: first, I believed that by identifying the successful patterns in the groups' development, I could provide crucial information that the child welfare agency could make use of, especially when it was helping people start new groups. Second, I thought that by letting the group leaders talk about their groups' development, I would be giving them an opportunity to tell me about their successes. From my long experience with self-help groups, I knew that many leaders show a strong resistance to strangers who come in and try to find fault with their group, so I thought I could soften them up a little by letting them tell me about their victories.
However, as I continued with the interviews I eventually gave up trying to trace the development of the groups for two main reasons: first of all, some of leaders were not the founders of their groups, which meant that they had no direct experience of how their groups were started. Consequently, when asked about the genesis of the groups, they often said, "I don't know much about that." Or, they said, "This issue of our newsletter tells about all it, so read that." Hence, my great strategy of using flattery fell flat! The other reason for giving up on trying to trace the origins of the groups was as follows: probably because of the presence of the social worker, the leaders were surprisingly open with me about their groups' problems. I didn't expect this, of course, so I promptly changed the focus of my research so that I could investigate their organisational problems.
My second series of interviews were focus group interviews. I chose to do focus group interviews because of the encouragement I received from Dr. Ian Shaw, my supervisor, and also because I found this method interesting and effective in collecting data on "deep" aspects of people's activities: In the focus groups, the participants were all leaders, and so they felt no need to give any explanations about elementary matters, which they might have done if they had been among strangers. I analysed this focus group data from the philosophical position of "realism." This means, I treated the data as if it mirrored "the objective reality" and counted the number of coded transcript lines, in an attempt to get an outline of "that objective reality." The results of this are shown on pages 155 to 160. However, I soon found myself in serious difficulties, because some parent groups sent me two of their leaders to participate in these interviews, and in some cases these leaders had different perceptions of their groups. If the objective reality were to be told, these pairs of leaders should have given similar accounts of similar problems, but this was not the case.
So, when I began to analyse the data from my third series of interviews - the guided interviews - I abandoned this "realistic" approach, and took a "narrative" approach instead, taking into consideration the relationship between the interviewer and the interviewees. Consequently, I found that I was dealing with three sorts of accounts, as I have already mentioned, and that these accounts were closely related to how the interviewees understood the interview context.
Why did you choose this topic and this sample?
As I have already mentioned, I did not choose this field so much as the field chose me. This way of entry into the field helped me greatly in developing trusted relationships with the group leaders.
Another reason why I became involved in this topic was at the time, very little research had been done on these parent groups. There have been a few studies on groups for parents of children with cancer or other specific diseases, but none of these studies involved several different types of diseases simultaneously, probably because it is extremely difficult for researchers to develop trusted relations with different self-help groups at the same time. However, in my field, I was able to approach over twenty parent groups, who were dealing with over twenty intractable diseases or syndromes, because fortunately for me, I had been accepted as a guest member of the Conference of Parent Groups, an umbrella group whose members came from many different parent groups. So I went into the research expecting to be able identify some common patterns and problems within all of these parent groups.
I ought to add at this point that I have been researching self-help groups for over twenty years - ever since I was undergraduate student, in fact. Self-help groups have become a lifelong topic of interest for me; perhaps even an obsession.
I have seen some very dramatic examples of the dynamics of human behaviour in self-help groups. People join their groups in a state of deep helplessness, in the hope that they will get some kind of help and support. What they often find instead is that through their despair and their suffering they can actually help other people. Suddenly they find that their misery has a meaning and a purpose, which makes it more acceptable and more bearable. So by helping others, they eventually help themselves. I feel there is a deep beauty and universal truth at work within these dynamics.
First of all, I used qualitative research, mainly because the unit of my research target was a group, not an individual. Although there were only about twenty groups involved in my research field, there was great diversity amongst these groups. Some of them had over a thousand members and were organised along the lines of a federation. Others had less than fifty members, and all that kept them going was the dedication and effort of a very small number of members. I therefore decided against using quantitative research such as a survey, because I thought it would be difficult - if not impossible - to treat very large organisations and very small groups as a single unit.
While there are a variety of methods that can be used in qualitative research, I used mainly interviews. I did this for a number of reasons. If you look at page 76 of my dissertation you will see that I decided not to use participant observation on these parent groups because first, I was interested in the groups' cognitive aspects, and not their behaviours. I wanted to know what the leaders thought of their organisational problems and what they considered to be possible solutions. Second, these parent groups didn't hold very many meetings. They usually got together only once or twice a year - maybe three times if they were lucky - and so I was afraid that my presence as an outsider might disrupt their precious time together. Third, the main purpose of their meetings was to discuss medical or social problems affecting their children and their families, not their groups' organisational problems, which they tended to discuss outside their meetings.
Nevertheless, I did do some participant observations. As I have mentioned on page 102, I participated in some overnight workshops run by two of the parent groups, but during these workshops there was almost no indication of any organisational problems. This is not surprising, of course, because if there had been any organisational problems within the group, they would have come to light when the workshops were being prepared, and they would have been taken care of behind the scenes. Similarly, I learnt early on not to rely on any of the documents the groups had published, because naturally enough, in their newsletters the groups put their best spin on what they were achieving. They have to do this, of course, if they are to get support from the medical professionals and the general public. Besides, I thought it was very unlikely that the small groups' intra-organisational problems would be documented in any of their papers or publications.
What do you see as the main contribution of your research?
From the practical viewpoint, the main contribution of my research has been that I am probably the first researcher to point out the importance of organisational socialisation in the development of self-help groups. Up until now, researchers and self-help group leaders have seldom paid much attention to the importance of the organisational socialisation. This is probably because they have put too much importance on the sense of fellowship that many of the participants experience when they met people living in the same circumstances as themselves. As I have mentioned on page 276, it seems that both researchers and group leaders have confused this personal fellowship with organisational membership. In other words, they thought that by sharing the same circumstances, group members would feel a sense of solidarity, and would get the urge to make an active contribution to their self-help groups. This is quite wrong. To get newcomers to contribute to their self-help groups, the leaders have to teach them a lot more about their groups: for example, they have to teach them about its aims, it goals, it history, and most importantly they have to let the newcomers know what is expected of them as members.
From the theoretical viewpoint, I can say that I have contributed to the study of self-help groups by applying theories of organisational studies to them. Although self-help groups have been studied for over three decades, many researchers have focused on the effect of the members' participation in the group. For example, a typical study has been to compare the psychological or physical conditions of the participants of self-help groups with those of non-participants. Very few researchers have been interested in the organisational problems of self-help groups. This is probably because of the academic backgrounds of the researchers.
Moreover, as I have mentioned on page 229, the small number of researchers who have done research on the organisational problems of self-help groups, have used equity theory. Equity theory is a popular psychological theory, but I think it is so generalised that it has fewer practical implications than theories of organisational studies. Moreover, being a practice-oriented researcher, I naturally preferred to apply organisational theories to my study of self-help groups. I probably have been one of the first to do this.
Also, from the methodological viewpoint, as far as I know this is the first time a narrative analysis has been conducted on the organisational problems of self-help groups.
What are strengths and weaknesses of your thesis?
One of the strengths of my thesis is the quality of interview data I was able to obtain. I believe that it is not easy for researchers to get access to self-help groups, let alone obtain interview data on their intraorganisational problems, because the leaders of these groups usually avoid talking about such problems with outsiders, especially in Japan where the concept of collectivism is very strong. However, I have been committed to this field since 1993, and I have succeeded in establishing trusting relationships with these leaders, which has enabled me to obtain confidential information on the leadership shortage problems.
Having said that, I readily admit that I would not have been able to carry out my research of over twenty parent groups for children with rare diseases without the support of the child welfare agency that has been instrumental in the development of these parent groups. Having the recognition and support of this social welfare agency has given my research increased authority.
As for the weaknesses of my thesis, I believe I have tried to introduce too many related theories, resulting in a rather cursory, inconsistent approach. Instead, I should have been more selective. I should have decided which theories were most important to my thesis, and discussed them in more detail. For example, I referred to the concept of organisational ecology, but my discussion about it is too superficial. Also, I referred to soft management science, but I have failed to explain it adequately. Social linguistics was introduced, too, but to be perfectly honest, I had difficulty understanding social linguistics and their application. In other words, my theoretical discussion included too many theories, few of which were examined adequately.
What kind of disabilities do the children have?
They have a wide range of disabilities. My research included twenty-one parent groups each dealing with a different disease or condition. Some of children have obvious physical and intellectual impairments, while others look perfectly normal. Some have diseases that will cause them to become increasingly more disabled, and others have diseases which will bring their lives to a premature close.
What kind of social services do the children use?
I have outlined the kinds of social services that are available to the children on page 56. However we could say that generally these children have fallen through the gaps in the social service net, because there are no comprehensive social welfare services for ill children in Japan. If the children become disabled due to their deteriorating health, they will be covered by a comprehensive child welfare system. However, if they have no disabilities, they will be entitled to subsidised medical care but they won't be eligible for any other social welfare support. However, the Japanese Government is now reconsidering its social welfare laws, and so things might improve in the near future.
What would you do differently if you were starting this work now?
If I were starting this research now, I would concentrate on using a narrative approach. Instead of counting coded lines of the transcripts, I would search for stories and metaphors because I found these very interesting. Also I have since learnt that there are many articles available on organisational stories and metaphors, and I would like to understand the theories pertaining to them. I would like to take a more post-modern orientation in analysing the data.
What problems did you face? How did you overcome them?
Generally speaking, I have been lucky with this research. I have been given three different research grants so that I could carry it out, and I have had amazing co-operation from the parent group leaders and the child welfare agency. Any problems I may have had were to do with my relationship with the research participants.
I came across an ethical dilemma during my participant research, which I have mentioned on page 303. In the focus group interviews, some participants severely criticised bereaved parents. I had some problems when I had to decide whether to print their remarks in the client report. Some leaders said that they should be included, and others said that they should be deleted. The research team's opinion was that I should delete them, but this was because one of the team members was a bereaved mother. If the team had had no bereaved parents, their opinion might have been different.
I believed that the position of bereaved parents in parents' groups was controversial, and so I wanted to include the focus groups participants' remarks in the report, but in the end I had to compromise. I ended up including some less critical quotes in place of the harsher remarks, and added an explanation in order to appease the leaders.
Another problem was that the qualitative research took much longer than the participants expected. I am a full-time employee, as I have mentioned in this thesis, and Japanese university teachers are not supposed to conduct social research very well, so it was very difficult for me to find time to analyse the data. In addition, as a researcher, I had to link the data with the appropriate theories, and, in order to do this, I had to learn about the theories. All of this took a great deal of time, but the participants did not seem to understand why I was taking so long to produce the tentative report. I was afraid that the delay might cause them to distrust me and so to overcome the problem, I volunteered to become a lecturer in a workshop, and to distribute the results of my previous research with the appropriate theoretical considerations. By doing that, I tried to show them that I was still working on the research and that I was being responsible and using the results to make a meaningful contribution to the development of their groups.
Copyright: Tomofumi Oka