Explorations of Organisational Problems of Self-Help Groups for Parents whose children have intractable diseases, with Focus Group Interviews

这个项目的目的是研究组织问题，特别是领导问题，在日本的自助团体的父母，他们的孩子患有疑难杂症。我参与了这些家长团体，并进行了六次焦点小组访谈，以及十四次指导访谈，涉及二十一个家长团体的成员。部分研究是以参与式行动研究的方式进行的，研究小组是由家长团体组成并授权进行的。我的研究结果表明，这些团体最严重的问题不是在他们的团体之外，而是在他们的团体内部，缺乏合适的领导者自愿参加活动。关于领导人的短缺，人们提出了三种不同的说法。其中包括辩解、指责和曝光：参与者声称照顾生病的孩子导致了领导力短缺;自私的成员造成了领导力短缺;或者年长的领导者继续掌舵的决心阻止了新成员成为领导者。我已经为这些情况绘制了认知地图，解释了搭便车和社会闲散问题背后的理论，以及父母群体面临的领导陷阱，并将归因理论应用于结果。我已经讨论了小组领导人的咨询的实用性，并认为，组织社会化应在家长组中激活，同时提出了一个湖中岛的模式的家长组。在方法论上，我讨论了日本文化中的社会研究和参与性行动研究的伦理问题。

The purpose of this project is to examine the organisational problems, and in particular the leadership problems, of self-help groups in Japan for parents whose children have intractable diseases. I have been involved with these parent groups, and have conducted six focus group interviews, and fourteen guided interviews, involving the members of twenty-one parent groups. Part of the research was carried out as participatory action research in which a research team was formed and authorised by the parent groups.My findings have shown that the groups' most serious problems lay not outside their groups but within, with the shortage of suitable leaders who volunteered in the activities. Three different sorts of account were given concerning the leadership shortage. They included justification, accusation and exposure : the participants claimed that taking care of ill children caused the leadership shortage ; selfish members created it ; or the determination of older leaders to remain at the helm prevented new members from becoming leaders. Cognitive maps have been drawn of these situations.I have explained the theories behind the free-rider and social loafing problems, and the leadership traps confronting the parent groups, and have applied attribution theory to the results. I have discussed the practicality of consultation for group leaders, and argued that organisational socialisation should be activated in the parent groups while propounding the island-within-a-lake model of parent groups. Methodologically, I discussed social research within Japanese culture and the ethical issues pertain to participatory action research.