Title: Improving Quality of Life for Elder Native American Cancer Survivors Focus group protocol included

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Rachel McCormick
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1 Title: Improving Quality of Life for Elder Native American Cancer Survivors Focus group protocol included Project Investigators: Linda Burhansstipanov, MSPH, DrPH, CHES, Executive Director, Native American Cancer Research and Linda U. Krebs, RN, PhD, AOCN, Associate Professor, University of Colorado School of Nursing The goal of this one-year pilot project is to create 5 culturally specific education fact sheets that address the identified cancer-related needs of elder Native American cancer survivors. The pilot study aims are: #1: By month 3, to identify elder Native American cancer survivors' Quality of Life issues (potential topics include communicating with providers, inability to obtain appropriate prescription medications, specific symptom management problems, palliative care, and end-of-life issues) through the use of focus groups with approximately 20 elders who are cancer survivors; #2: By month 7, to create draft fact sheets for the 5 top priority elder-identified topics; #3: By month 9, to pilot test the draft fact sheets during the National Native American Cancer Survivors' Meeting (September 21-24, 2006); and #4: By month 12, to revise, evaluate and disseminate the finalized fact sheets to at least 100 Native Elder cancer survivors from across the US as well as make the fact sheets available for download through the Native American Cancer Research (NACR) website. Through our local Native Survivors Support Group, we will hold one focus group (FG) and in collaboration with the Native Wellness and Healing elders track, we will hold two more intertribal FGs. The FGs will address the types of information elders want to have as easy-to-understand fact sheets. Through our ongoing "Native American Cancer Education for Survivors" (NACES) project, we have both a Panel of Experts and an Advisory Committee comprised of Native cancer survivors (multiple types of cancer) who will help us refine the fact sheets. The Fact Sheets will supplement the current NACES online web information and be modeled after the Intercultural Cancer Council s (ICC) Fact Sheets ( The purpose of this Focus Group is to gather information from Native American elder cancer survivors and family caregivers. We want to learn about the type of information elders would like to have about cancer. This information will be used to make easy-to-understand Native American Cancer Fact Sheets. The goal of the Fact Sheets is to improve the quality of life of Native elders with cancer. What is a focus group? Page 1 of 7

2 A Focus Group has five (5) to ten (10) people who gather together to express their ideas, opinions, attitudes, and knowledge about a certain topic. A Focus Group is a group discussion about three-to-five specific questions. This Focus Group will last about two hours. There is no right or wrong answer to a Focus Group question. All ideas and opinions are welcomed. How are people recruited to the focus groups? Focus Group participants will be recruited by local Native survivors and leaders providing names and contact information to NACR staff. NACR staff will call the potential participant to make certain they know the logistics for the meeting, the purpose and process for how the focus group will be conducted. For example, the fact sheet includes information similar to: The Focus Group will be held on Thursday, April 20th, from 6:00 pm to 8:00 pm in the Community Room at the Four Winds Indian Center at 445 Banning Street, Denver, CO. During the staff call, directions and starting time of the focus group will be reviewed with the potential participant. All potential focus group members will be given a Focus Group Overview handout similar to the one on the next page. Who are the intended participants for the focus groups? A total of 24 Natives, of which will include: Both genders At least half will be elder cancer survivors At least one-quarter will be loved ones and family members of Native elder cancer patients and survivors At least three will be educators who work with Natives in community settings. Page 2 of 7

Improving Quality of Life for Elder Native American Cancer Survivors Focus Group Overview The goal of this project is to create 5 Native-specific cancer fact sheets to address the priority needs of

3 Improving Quality of Life for Elder Native American Cancer Survivors Focus Group Overview The goal of this project is to create 5 Native-specific cancer fact sheets to address the priority needs of elder Native American cancer survivors The purpose of this Focus Group is to gather information from Native American elder cancer survivors and family caregivers. We want to learn about the type of information elders would like to have about cancer. This information will be used to make easy-to-understand Native American Cancer Fact Sheets. The goal of the Fact Sheets is to improve the quality of life of Native elders with cancer. The Focus Groups will gather together five to ten Native American people, of different ages and sexes, to talk about elder cancer issues. The Focus Group will be held on Monday, April 10 th, from 6:00 pm to 8:00 pm at the Denver Indian Family Resource Center (393 S. Harlan, Lakewood, CO 80223). Refreshments will be served. All participants who complete the Focus Group will receive $20.00 for their time and sharing. The Focus Groups will include a discussion where everyone will interact and share ideas. The Focus Group will be audio taped, but your name and any private information you choose to share will not be identified with your name in the notes. Native American elder cancer patients and / or their family caregivers are encouraged to participate in the Focus Group. Participation in the Focus Groups will help us understand the needs of elder Native Americans with cancer. The focus is to answer questions that many Native elders have about surviving cancer. The result will be easy-to-understand information sheets. Your voice will be heard. If you are interested in taking part, or want more information, please contact Native American Cancer Research at Native American Cancer Research 3022 South Nova Road Pine, CO phone: fax: Native Cancer Survivors' Support Network: web page: Page 3 of 7

4 How are focus groups conducted? Native focus groups begin with a blessing given by a local Native elder. Power Point slides are used to provide an overview of the Focus Group Key Points, as well to collect demographics with the Audience Response System. The slides review how their private information will be protected both during and following the group meeting. The group will be audiorecorded but no identifiers will be included in any transcripts. Three to five questions will be discussed by participants to solicit their opinions and guidance. At the end of the focus group, each participant signs a receipt using one s real name to receive a $20 partial payment for their time and effort. Healthy refreshments are served at the beginning of the discussion and available throughout. How is the participants privacy protected? Focus Group participants will select a Name Tent with a fake name to be used throughout the discussion. A copy of the Name Tent is included in Figure 1. The Focus Group discussion will be audio-recorded, but the participant s real name will not be on the tape (the participant will use the fake name on their selected name tent during the discussion). The tape is used to be sure we get everybody s ideas, phrasing of issues, and comments correct. No real names or identifiers will be included in any reports or summaries about the project. The only time real names and identifiers are collected is for the NACR fiscal officer in compliance with external auditing guidelines and policies. The NACR staff and investigators will not have access to any identifying information. What are the potential benefits to taking part in the project? The participants will be able to help prioritize issues of concern to Native elder cancer patients. They will receive a small fee of $20 and a gasoline reimbursement for those who request it or need it as partial compensation for their time and assistance with the focus groups. There are no significant personal benefits. What are the potential risks or drawbacks to taking part in the project? The focus groups will only ask for their opinion about Fact Sheets to be created. No risks or drawbacks are anticipated for those taking part in a focus group. Page 4 of 7

5 What questions will be asked? 1. What is the one thing you would have liked to know about having cancer or getting cancer treatment? 2. What was the most difficult or challenging part about having cancer? Was there anything particularly frustrating for you? 3. Since the cancer experience, has your physical, mental-emotional, social or spiritual health changed? In what ways? 4. What would you want another elder who is newly diagnosed with cancer to know? 5. We are developing 5 Fact Sheets. What topics would you like to see? WRAP-UP Question: Is there anything else you want to share about your experience with cancer that you think might help other elders? What are the payments? At the end of the Focus Group the participant will receive a $20 payment to partially compensate them for providing their time and help. Each participant will sign a receipt form using their real name and Social Security Number before receiving payment. They will be given cash at the end of the group meeting. The payment slips and fake names will not be grouped or linked in any way. The Social Security number is required on the payment slip by NACR s external auditors for all cash payments made. The investigators will not have access to the payment slips for any attempts to link the fake names to real identities following the group session. The slips are given to NACR s fiscal officer for payment back to the investigator who provided the cash payments. In addition, participants will receive a cash payment to help cover the cost of their travel to get and from the focus group meeting site if desired. Who are the Focus Group Facilitators?: Drs. Burhansstipanov and Krebs have both been trained and implemented both professional and community-level focus groups for more than 15 years. Who are the Focus Group Note takers?. NACR staff and/or Drs. Burhansstipanov or Krebs will take supplementary notes during the focus groups. What are the Audio-recordings? Both tape and digital audio recorders will be used to record focus group discussions. This is to allow for correct phrasing of issues as delivered by the focus group participants. What are the Verbatim transcripts? Ms. Peg Fennimore, NACR secretary, will type the verbatim transcripts from the audio-recordings of each focus group. Occasionally participants forget and use real names during the discussion. The transcriber will omit these names when creating the transcripts. Thus, no real names will be included. Page 5 of 7

How are the transcripts analyzed? Following each focus group, Ms. Peg Fennimore, NACR s secretary, will transcribe the audiotape into verbatim transcripts. These transcripts are then given to Ms.

6 How are the transcripts analyzed? Following each focus group, Ms. Peg Fennimore, NACR s secretary, will transcribe the audiotape into verbatim transcripts. These transcripts are then given to Ms. Deb Kleinman, epidemiologist consultant for NACR, who will create a code book for use with N*Vivo software for qualitative analysis. The codebook will be reviewed for breadth and accuracy by Drs. Burhansstipanov and Krebs. Ms. Kleinman will prepare the N*Vivo qualitative summary prioritizing the themes and topics of most interest to elders. Who is the "Native American Cancer Education for Survivors" Advisory Committee and what is their role on this project? This Committee includes seven Native American cancer survivors of which all are elders from diverse regions of Indian Country. These Committee members work both in local Native cancer survivorship programs as well as with NACR on international Indigenous Peoples cancer programs. Cancers experienced by the Committee members include bone, breast, cervix, colon, and kidney. All are respected members of local Native community members and nationally recognized as experts on Native cancer issues. Their roles on this project will include reviewing the N*Vivo qualitative summaries, draft Fact Sheets, Revised Fact Sheets and the interactive fact sheets once they are placed onto the NACR web site. N*Vivo Summary of priority themes. Drs. Burhansstipanov and Krebs will share these the N*Vivo qualitative findings with the "Native American Cancer Education for Survivors" Advisory Committee members for their feedback, specific issues they feel need to be highlighted and cultural issues to be included. Based upon the NACES Advisory Committee s guidance, Drs. Burhansstipanov and Krebs will draft the five fact sheets and identify the types and content of graphics to be included. Mr. Rick Clark will add graphics appropriate to each fact sheet. These draft fact sheets will be revised to be 5 th to 7 th grade reading level and at 14 point font size. They will then be critiqued by the NACES Advisory Committee for accuracy, clarity, and cultural relevance. Based upon the NACES Advisory Committee s recommendations for revision, Drs. Burhansstipanov and Krebs will refine the Fact Sheets.. Page 6 of 7

7 The five fact sheets will be disseminated and critiqued during the "Quality of Life through Roots of Strength" conference, to be held September 21-24, 2006 th in Denver, CO. We anticipate 120 Native survivors and about 30 non-native to participate in this conference. We will use NACR s Audience Response System (ARS) to obtain quantitative priority scores for each Fact Sheet. We will collect demographic items to categorize responses of survivors in comparison with those who are not cancer survivors or loved ones of cancer survivors. Based upon the quantitative findings and comments provided during the conference review of the Fact Sheets, the Sheets will be revised again. A local group of Native survivors who take part in NACR s Native Survivors Support Groups will provide the final review and critique. Changes will be made as deemed necessary. The NACES Advisory Committee will review each Fact Sheet for cultural appropriateness, accuracy and ease to understanding. These final drafts will be provided to Mr. Eduard Gamito during fall 2006 to add interactive components within the NACR website for survivors to use. We will ask the NACES Advisory Committee to review the interactive Fact Sheets online. A comment space will be included on the web site for people to write in suggestions for the fact sheets or interactivity functions. Page 7 of 7

Native American Cancer Education for Survivors (NACES)

Native American Cancer Education for Survivors (NACES) Indigenous Peoples Cancer Survivorship Across the World This workshop is dedicated to Eduard Gamito, dear friend and colleague Linda Burhansstipanov, MSPH, DrPH (Cherokee Nation of OK), Grants Director