Discussion Guide with Data Generating Questions

participant to a private room to review the purpose of the study and the consent form. Allow time for each participant to read the consent privately, receive answers to

questions, and sign both copies of the consent. Thank the participant for agreeing to be a part of this study. Then invite the participant to complete the demographic data form. After collecting all signed consents and demographic forms, direct the participants to the scheduled meeting room and begin the session. Take time to have participants informally introduce themselves to one another, orient them to restroom locations, and offer

refreshments.

Begin the discussion by saying, “We appreciate the time you have taken to participate in this study and to prepare ahead of time for our meeting. Now we will review the rules for our discussion.

Guidelines for Moderators

1. Remind participants of the purpose of the study and answer any questions by the participants.

2. Participants should be encouraged to share their opinions, experiences, and related comments about PC/EOL communication during the session. Encourage self-disclosure, both positive and negative perceptions.

3. Tell participants of your confidence in their caring and professionalism to hold all discussion as confidential and not be discussed outside of the group.

4. Remind participants of the purpose of audio-taping of sessions and note-taking by the recorder to document non-verbal communication during the session.

5. Remind participants that the focus group will end after they feel they have shared everything they want to, but will last no longer than 2 hours.

6. Inform the participants that the moderator will schedule a 15 min. break during the session.

7. Remind participants that refreshments will be served during the session.

“For the next two hours, we will discuss several broad topics related to communicating about palliative and end-of-life care with children with cancer, their families, and health care providers. As you share your experiences, it is important to keep in mind the comprehensive definitions of the terms used in this study. Palliative care refers to the active and total care to improve quality of life for a patient whose disease is not

responsive to curative treatment, combining active and compassionate therapies intended to comfort, soothe, and relieve people with a life-threatening condition. Also for this study end-of-life care refers to the terminal phase of care when health care professionals continue palliative care in light of the imminence of death, implementing emotional and spiritual support for the child with cancer, family, and caregivers while simultaneously enhancing comfort measures during the final phase of life.

Please describe your experiences with as much detail as you can. We will take a break about half-way through the session.

The session will be audio-taped. Since we will use your first names, we want to again assure you that we will be careful to remove all names and other identifying information from transcriptions of the audiotapes. We are confident of your caring and

professionalism to keep all information discussed here as confidential. So that everyone can feel comfortable with sharing his or her experiences, we ask that you not discuss anything shared by another participant outside of this session. Before we begin, are there any other questions?”

Allow enough time for participants to ask and have questions answered. Focus Group Discussion Guide

“Now, let’s begin.” Turn on tape-recorder.

(Data Generating Questions for Study Aim 1 Research Question 1.1 regarding patients) We are going to focus our first on patients. Please tell us about your experiences of communicating with children with cancer about palliative and end-of-life care.

You may use the following prompt questions if participants have difficulty beginning the discussion and to encourage full descriptions:

 We are most interested in specific stories you can share. What can you share about an experience with a specific patient?

 Please, can you tell me more about that?

(Data-generating questions for Study Aim 2, research questions 2.1 and 2.4 regarding patients. Note: Ask these questions only after a full description of experiences of communicating with children with cancer have been fully explored.)

 What do you think especially helped you in communicating with children with cancer about palliative and end-of-life care?

 What literature has been available to you as an institutional resource for communicating about palliative and end-of-life care to children with cancer?  What personnel at your institution have you used as a resource for

communicating about palliative and end-of-life care to children with cancer?  What barriers prevent you from communicating effectively about palliative

and end-of-life care to children with cancer?

 What did you perceive as priority concerns for nurses in communicating to children with cancer about palliative and end-of-life care?

After this sequence of discussion is completed, check in with participants if they need a break.

(For Aim 1, Research questions 1.2 and 1.3, and Study Aim 2, Research Questions 2.2, 2.3, 2.5, and 2.6, repeat the above sequence of data-generating questions, substituting families of children with cancer and HCP.)

If you haven’t taken a break before, take one at this time.

For our last topic, please tell us your personal experiences of communicating with other health care providers of children with cancer about palliative and end-of-life care. You may use the following prompt questions if participants have difficulty beginning the discussion and to encourage full descriptions:

 What do you think especially helped you in communicating with other health care providers of children with cancer about palliative and end-of-life care?  What literature has been available to you as an institutional resource for

communicating about palliative and end-of-life care to health care providers?  What personnel at your institution have you used as a resource for

communicating about palliative and end-of-life care to health care providers?  What barriers prevented you from communicating effectively about palliative

and end-of-life care to health care providers?

 What did you perceive as priority concerns for nurses in communicating with other health care providers of children with cancer about palliative and end- of-life care?

End the session on time. Thank the nurses for their participation and remind them to not repeat or discuss any information shared by other participants.

Appendix B: Demographic Form