Self-Help Groups for Parents of Children with Intractable Diseases: A Qualitative Study of Their Organisational Problems

The purpose of this dissertation 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. Since 1993, I have been involved with these parent groups, and have conducted three sorts of qualitative interview: thirteen informal conversational interviews, four 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 have discussed social research within Japanese culture and the ethical issues pertain to participatory action research.