Parent Groups for Children with Rare and Serious Diseases

Parent Groups for Children with Rare and Serious Diseases

Presented at 4th Qualitative Health Research Conference in Vancouver on February 19-21, 1998.
Tomofumi Oka

Presentation Slide Show (PPS), Summary (PDF)

Contents

  1. Parent Groups for Children with Rare and Serious Diseases
  2. Main Points
  3. Outline of the Paper
  4. Research Context
  5. Research Process in Organisations
  6. Organisational Difficulties
  7. Difficulties Reaching Consensus on Methods
  8. Collecting Data from Focus Group Interviews
  9. Difficulties with Collecting Data
  10. Participatory Data Analysis
  11. Care-Giving Parents
  12. Why cannot Bereaved Parents be Good Leaders?
  13. Sensitive Topic and Psychological Stress
  14. Difficulties with Participatory Analysis
Madam Chairperson, Ladies, and Gentlemen. It is a great pleasure for me to be here and to be able to speak at this session.
May I have the first slide, please?

My purpose today is to talk about my research on self-help groups for parents whose children have rare and serious diseases. My research method was a combination of focus group interviews and participatory action research.
First of all, I would like to outline the main points of my paper. Next slide, please.

This slide shows the main points of my paper.
In my research, some of the group leaders who took part in the focus group interviews also became members of the research team. They became co-researchers, and they took an active part in data analysis. We would like to call this process "Participatory Analysis."
During participatory analysis, the co-researchers read and discussed the comments made by the participants in the focus group interview transcripts, and recognised that some of the quotes were their own words.
In this situation, when they discussed sensitive topics such as the death of children, some of the co-researchers felt threatened by the participatory analysis process and became psychologically stressed.
This is my main points. Next, I will show the outline of this paper. Next slide, please.

I will divide my talk into four parts. I will first describe the context of my research.
In the second part, I will talk about how I organised the research team.
The third part deals with the way we collected data using focus group interviews.
Lastly, I will talk about our participatory analysis and the psychological stress that some of our co-researchers experienced. May I have the next slide, please?

This slide shows the context of our research.
Twenty-one groups for parents of sick children organised a parent group conference; this conference was supported by a child welfare agency, the National Network for Supporting Sick Children.
As a volunteer, I have participated in the National Network for five years, and I have developed relationships with the leaders of the parent groups.
I have done two research projects using individual interviews to collect data, and two years ago, as the next step in my research program, I decided to conduct participatory action research using focus group interviews. I asked the Director of the National Network to co-operate with me, and as a result, the Parent Group Conference established a research team as a branch of its organisation.
This research team consisted of seven group leaders, the Director of the National Network, and me.
Next slide, please.

This shows how I organised the research team.
First, I consulted with the Director of the National Network. We can call him the gatekeeper in the project. He gave me suggestions and introduced my research plan to the Conference.
Second, the Conference approved my research plan and let me organise a team to make the research design. I invited four leaders who had expressed a willingness to join the design team, and on the gatekeeperfs advice I included another leader. The team consisted of these leaders, the gatekeeper, and me. This team had only one meeting, but it authorised our research design.
Third, the Conference approved the research design, and asked the design team to function as a research team with a few change to some of the members.
While trying to organise the research team I met with some difficulties, which I will now outline.
Next slide, please.

This shows the difficulties I met while organising the research.
First of all, it was difficult for me to choose the members of the research team. What are the criteria of "good" team members? Willingness to join the team? Their interest in the research? Their personal relations with me? Their intelligence and abilities? Their influence over the Conference? The resources available to them, including free time? Their positions within their own groups? Will the team as a whole provide for representative sampling? I found that I could not establish the criteria. Nor did I had any idea of what would be the proper procedure to use for choosing the research team which would be readily accepted by the group leaders. Consequently, I could not be actively involved in choosing the members of the team.
Second, the Parent Group Conference was a loose organisation, therefore, even after I had got the approval of the Conference, I had to actively persuade some individual parent groups to join the research.
Third, my research plan was introduced by the Director of the National Network, and so many members of the Conference thought that the plan was initiated by him. Because some members of the Conference were in conflict with him, they had a negative attitude towards the research project.
Next, I will describe the problems I had concerning research methods.
Next slide, please.

First, many group leaders had doubts about the usefulness of this research project although they acknowledged the importance of research generally. This was because they had had previous experience of being used for research by human service professionals, and they had found it useless. The research had contributed nothing towards developing a cure for their diseases nor had it improved the quality of the care they received.
Second, the group leaders were unfamiliar with focus group interviews. Their idea of research seemed to be quantitative. "Just chatting? Is that real research?" said our gatekeeper.
I had anticipated the third problem: that the participatory research might be unattractive to people. However, I found this was not the case. People showed interest in participatory research.
Next slide, please.

This slide describes how I collected the data.
The research team had two members who did not participate in the focus group interviews, because they were a patient, and a social worker who was employed by a parent group. I restricted the interview participants to parents, so I asked the two non-participants to contribute to testing a pilot interview.
Second, I conducted four focus group interviews. Each group had six participants.
Third, I asked every group of the Conference to send me one or two participants for the interviews. This was not a good way of sampling, but the group leaders were so busy with caring for their sick children and working for the parent groups that I had no choice.
Lastly, I organised the focus group so that they were made up of participants who belonged to different parent groups. I did this so that they could speak out freely about their groupfs problems.
Next slide, please.

I will now outline two problems we had while collecting data.
First, I could not control the sampling process well enough. This was because the group leaders were very busy involved in caring for sick children, and it was hard for them to leave home just to participate in interviews.
Second, I asked each group to choose one or two participants. The requirements I gave of the participants were that they should have experience in leading groups, and that they should be parents. However, some group leaders thought this was a good chance to educate their new leaders. In the focus groups they would have opportunities to learn about the other parent groups, which would give them a new perspective of their own group. As a result, one participant was found to be a patient, not a parent, and another had just started to work as a leader.
Also certain participants may have been selected by their groups for ulterior reasons. A pair of participants from one group severely criticised their leader in the focus group interviews. The person who chose them was not the leader and therefore the choice of participants might have had a political purpose.
Next, I will talk about data analysis. Next slide, please.

This slide shows how I organised the participatory data analysis.
First, I promised the participants that the transcripts of all interviews would be strictly confidential and therefore I could not show the raw data file to the research team. I analysed the transcripts with QSR NUD*IST, and made a draft which contained many anonymous direct quotes. I showed it to the research team, and rewrote it seven times over, incorporating their feedback.
The research team had five meetings in six months to discuss the research report. This research team contributed significantly to developing the report in three ways.
First, the team helped me to differentiate between the important data and the unimportant. We call it "weighting the data". Qualitative research produces a tremendous amount of data, and so data reduction is an important step. Involving the research consumers made it easier to reduce the data. The data from the focus group interviews were so complex, but having the participants "weight the data" made it easier for us to reduce the data.
Second, the team helped me to display the data more effectively. The team gave me a great deal of advice, from the choice of fonts and figures to the design of the layouts.
Third, the team worked as a safety device. The report included many sensitive topics and my drafts had comments that could hurt group leaders if they read them. The team checked confusing statements, and often asked me to tone down some of the harsher comments.
Next, I will talk in more detail about the sensitive topics we had to deal with. Next slide, please.

One of the most sensitive topics was the role of the parents of dead children. In fact, some group leaders were parents who had lost their children. We will call them "bereaved parents." Because bereaved parents are free from having to care for sick children, they have more free time. They are able to volunteer and take an active role in the management of their parent groups.
Also, according to Japanese Buddhist teachings, living people can work for the happiness of the dead. We call this work "KUYO." Therefore, some bereaved parents are spiritually motivated and eagerly work for their parent groups to do KUYO.
However, some parents with sick children say that bereaved parents can not be good leaders because they are no longer in the same position as parents with living children.
I will show you the reasons why bereaved parents can not be good leaders. These reasons were pointed out by the interview participants.
Next slide, please.

In the focus group interviews and in the research team discussions, people talked about the reasons why bereaved parents can not be good leaders. I will pick up on three of the points they made.
First, bereaved parents are not living in the same situations as care-giving parents. To be caring for sick children in the present is quite different from having once cared for them in the past.Bereaved parents can not share the same feelings as parents who are in the process of caring for sick children.
Second, bereaved parents often have out-of-date perceptions about the current environment around sick children. The medical and educational environment around sick children is rapidly changing but for the bereaved parents, time stopped when their children died.
The third point is psychological. Parents with sick children are not ready to deal with the likelihood of their dying. They are not happy to be advised by parents whose children are dead.
Even though it is true, it was not easy to put this in the report, because many bereaved parents will read the report. Initially, this topic caused psychological stress for the research team. I will now talk about this psychological stress.
Next slide, please.

This shows how this sensitive topic caused psychological stress for the research team members.
In a meeting, I asked the research team to examine the comments that would be quoted in the research report. Our research team had a bereaved mother. She pointed out, with much hesitation, that the comments criticizing bereaved parents were too cruel.
A member of the team, who was the mother of a sick child, found that some of the comments were her own. She knew the context in which these words were originally said, but she could not explain why and how the comments were made, because she did not want the bereaved mother to know that these were her words.
During the discussion, the bereaved mother said that she herself had lost her daughter. The team member who had made the comments was shocked, and she said to me later in private that she felt very badly about what she had said.
Next slide, please.

During the research team meeting, the mother whose comments were being discussed did an about-face and said that she agreed with the bereaved mother. She did not want to admit that the comments were her own, so she could not justify them.
We can see that this was a defence mechanism of a person under psychological stress. I also found that another research team member, who criticised bereaved parents in private conversations, changed her opinion in front of the bereaved mother.
Therefore, we should pay attention to the group dynamics of our research team. If the research team had had no bereaved parents, the report might have been different, and the comments made in the report might have produced more psychological stress on bereaved parents.
So, in this way, the research team worked as a safety device and prevented psychologically damaging parents whose children had died.
That is all for the slides. Now, may I have the lights on, please?
Lastly, let me make a short comment on my future plans. The Parent Group Conference gave approval for me to continue my research, and I plan to interview individually the members of the research team, and the people who participated in my focus group interviews.
Thank you very much for your attention.