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日本的自助团体的组织问题，特别是领导问题，为那些孩子患有顽固性疾病的父母提供帮助。我参与了这些家长小组，并进行了6次焦点小组访谈和14次有指导的访谈，涉及21个家长小组的成员。部分研究是作为参与性行动研究进行的，其中成立了一个研究小组，并得到家长小组的授权。我的研究结果表明，小组最严重的问题不是在小组之外，而是在小组内部，缺乏合适的领导人自愿参与活动。关于领导层短缺的问题，有三种不同的说法。这些问题包括理由、指责和曝光：参与者声称，照顾患病儿童导致了领导力短缺；自私的成员造成了领导力短缺；或者是年长领导人决心继续掌舵，阻止了新成员成为领导者。我已经绘制了这些情况的认知图。我解释了搭便车和社会游手好闲问题背后的理论，以及家长群体面临的领导陷阱，并将归因理论应用于结果。我已经讨论了与组长协商的可行性，并主张在提出家长群体的湖中岛模式的同时，应在家长群体中启动组织社会化。在方法论上，我讨论了日本文化中的社会研究，以及与参与性行动研究有关的伦理问题。

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.