Parent Groups for Children with Rare and Serious Diseases

1. Parent Groups for Children with Rare and Serious Diseases A Combined Use of Focus Group Interviews and Participatory Action Research Tomofumi Oka Sophia University, Tokyo

2. Research team Main Points Participatory analysis Focus group interviews ＋ Self-analysis on sensitive topics Participatory action research Psychological stress

3. Outline of the Paper 1. Research context 2. Organising the research team 3. Collecting data using focus group interviews 4. Participatory analysis

4. Research Context Researcher The Parent Group Conference Twenty-one Groups National Network for Supporting Sick Children Director Support Research Team

5. Research Process in Organisations 3 Research Team 2 Research Report Design Team Research Design Approve 1 Approve Gatekeeper Conference Introduction of Research Plan National Network

6. Organisational Difficulties • How to choose team members • Informality of the Group Conference • Conflicts between the gatekeeper and some groups

7. Difficulties Reaching Consensus on Methods • Doubts about usefulness of research • Unfamiliarity with focus group interviews • Unfamiliarity with participatory research

8. Collecting Data from Focus Group Interviews • Pilot testing by the research team • Four focus groups of six participants • Asked each parent group to send one or two parents as participants • All the participants in a focus group belonged to different parent groups

9. Difficulties with Collecting Data • Researcher’s limited control in sampling • busy care-givers • Groups’ intentions when choosing participants • educating new leaders • influencing their own groups

10. Participatory Data Analysis • Weighting data • for focusing and data reduction • Developing data display • Functioning as a safety device • for dealing with sensitive topics

11. Bereaved Parents Care-Giving Parents Free from the caring role Able to be active Want to work for the dead children (“KUYO”) Busy caring for children

12. Why can’t Bereaved Parents be Good Leaders? • Living in different situations • Out-of-date perceptions of situations • Associated with the death of children

13. Sensitive Topic & Psychological Stress Focus group interview context Comments criticising bereaved parents Sorrow Feelings of guilt Only she knows A care-giving mother with a sick child A bereaved mother

14. Difficulties with Participatory Analysis • Psychological stress • Defence mechanism • Group dynamics of research team