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  • #A1-13 Native Navigators: Engaging

    Communities for Cancer Education


    Thursday, November 1, 2012

    1:30 pm to 3:00 pm

  • Site PIs and Co-Investigators

    Linda Burhansstipanov, MSPH, DrPH, Principal Investigator, NACR, CO

    Linda U. Krebs, RN, PhD, AOCN, FAAN

    Co-Investigator, OCEAN, CO

    Noel Pingatore, BS, ITCMI, MI

    Daniel Petereit, MD, RCRH, SD

    Debra Isham, MPH, MCN, OK

    Mark Dignan, PhD, UK, Lexington, KY

  • 3

    Introduction /

    Background / Overview

    Linda Burhansstipanov,

    MSPH, DrPH

    10 minutes

  • Native Navigators and the Cancer

    Continuum Funded by National Institutes of Health

    Awarded to Native American Cancer

    Research Corporation; Sub contracts to:

    Inter-Tribal Council of Michigan; MI

    Rapid City Regional Hospital, SD

    Aberdeen Area Tribal Chairman's

    Health Board, SD

    Muscogee (Creek) Nation, OK

    University of Kentucky, KY

    Inter-Tribal Council of Michigan

  • 5 5

    Native Navigators and the Cancer

    Continuum (NNACC)

    Funded by the NIH, National Center on

    Minority Health and Health Disparities

    [NIH, NCMHD R24MD002811]

    The goal is for the Partners to collaborate,

    refine, expand and adapt various

    navigator/community education programs

    to address the Native American

    communities and patients needs

    throughout the continuum of cancer care.

  • 6 6


    Great Plains Tribal

    Locations of the NNACC Partners -- Community based

    participatory research

  • 7

    Research Question

    Can a Native specific



    community cancer

    education intervention

    improve health

    behaviors among

    Native American

    community members?

  • Intervention Based on:

    Consensus (via Focus Groups)

    Informant Interviews (prior to initiation of grant based on CMAP / MUP)

    Tailoring under the control of each Partner

    What how does the local NPN help the participant in culturally appropriate manners?

    Blessing of mamm van in 1 area, but not necessary in the other areas


  • 9

    Community Education


    Topics for 24 hours of Cancer

    Continuum education conducted

    in partnership with local

    American Indian organizations

    Prevention - Risk Reduction

    Early Detection and Screening

    Palliative and Hospice Care

    Quality of Life / Survivorship

  • 10

    Excerpt of NPN Training topics (125 hours)

    Overview of the NNACC

    Confidentiality (both NIH course and certification of passing, plus 2-3 hours for study-specific issues and practice

    NPN Communication

    Navigating the healthcare system (accessing IHS CHS, tribal, urban, etc.)

    Instruction on how to teach all of the workshops

  • 11

    MoA-Os Collaborations

    Agreements with MoA-Os

    Coordinate Family Fun Events:

    Baseline data collection and kick-off

    3-6 month delayed Event

    Follows the completion of 24-hours of education that addresses the full continuum of cancer

    Disseminate findings to local communities

  • 12


    Site-specific (tailored), Native American

    Navigator/Community Educator-

    implemented cancer education programs

    that address the full continuum of cancer

    care to:

    Increase community knowledge

    Increase community screening

    Improve access to (timely & quality)

    cancer care

    Increases visibility / availability of NPN

  • 13

    Examples of Lessons

    Learned (Challenges and

    Innovative Solutions)

    Linda U. Krebs, RN, PhD,


    30 minutes

  • 14

    Challenges/Solutions/Lessons Learned:


    IRB processes can take

    2-9 months regardless

    of previously approved

    tribal resolutions or


    Plan time accordingly;

    involve community;

    make contacts early

  • 15

    Challenges/Solutions/Lessons Learned:

    Navigator In-service Training

    Start-up training took longer than anticipated

    Training sessions

    160 hrs for comfort/ comprehension .

    200+ hrs for semi-annual updates/refreshers

    Some trainings repeated as level of readiness


    Videotaping allowed for review of topics and

    helped with staff turnover and new staff hires

  • 16

    Challenges/Solutions/Lessons Learned:

    In-service Training

    Webinars very effective for meetings &

    trainings, but face-to-face is best.

    More face-to-face sessions needed

    Estimated 3 face-to-face meetings in

    year 01, then 2 in year 02, and then 1


  • 17

    Challenges/Solutions/Lessons Learned:


    Some not fully prepared to staff events

    longer registration times

    difficulty tracking ARS keypads.

    Rooms not big enough

    Food essential but sometimes took away from presentation times

    Needed to withhold final payments until all tasks (FFEs & all workshops) completed

  • 18

    Challenges/Solutions/Lessons Learned:

    Community Workshops

    Workshops more popular than anticipated.

    Many wanted to attend more than 1 series

    Some went to 1 series and then brought

    family and friends to a 2nd

    Those who attended multiple workshops

    increased their learning, but

    Could possibly skew the data

  • 19

    Challenges/Solutions/Lessons Learned:

    Community Workshops

    Needed more $10 gift cards as partial

    compensation for gasoline or baby-sitting

    Obtained supplemental funding for one

    site to support gift cards for duplicate


    More funds would have been beneficial as

    interest in workshops increased

  • 20

    Challenges/Solutions/Lessons Learned:

    Sharing Files among Partners

    Power Point slides, interactive materials, and updates had to be shared

    Many refinements over grant to:

    ARS questions

    Notes pages and content

    interactive activities (Jeopardy, Bingo, Coyote-Bear)

    Accessed thru NACR password-protected page

  • 21

    Challenges/Solutions/Lessons Learned:

    Audience Response System

    ARS, once learned, is working well for


    Because of higher than anticipated

    participation, keypads had to be loaned

    to some sites

    Participants love using ARS, ask for it and

    always want to use it

  • Challenges/Solutions/Lessons Learned:

    Provider Perspectives Navigator training sessions needed to be:

    At a level of understanding for those

    with limited medical and cancer care


    Adjusted to readiness for learning

    Ongoing and frequently updated

    Support and answers rapidly available

  • Challenges/Solutions/Lessons Learned:

    Dissemination Feedback to communities, funders and

    others is essential on a routine basis

    Site-specific community feedback flyers

    developed and presented at each FFE

    Information shared with clinic managers,

    health boards and via formal presentations

    Science Advances submitted to share

    innovative ideas and solutions

  • 24

    Challenges/Solutions/Lessons Learned :

    Navigators & Visibility

    Education Intervention is successfully

    increasing the visibility of the Navigators

    Many community members are talking with

    the Navigators about screening and other


    The Community likes the workshops, the

    events and LOVES the Navigators!

  • 25

    Lessons Learned

    Loretta Denny

    Muscogee (Creek)


  • Lessons Learned

    NNACC-MCN = effective way to

    Reach the tribal community

    Improve cancer risk behaviors and

    Screening awareness and anecdotal data

    Our tribal citizens were eager to learn and

    have shared positive comments about the

    program and taking part in screening

    Overall increase knowledge scores: 24.6%

  • Native Navigators and the Cancer Continuum

    The Native American population suffers higher rates

    of cancer incidence and other chronic diseases

    compared to

    The general population in Oklahoma

    AIs living in other geographic areas.

    Some of the participants shared their own personal

    or family ordeal with cancer.

    97% felt using the ARS keypads was useful and

    especially liked seeing the correct answers and

    were excited when their answer was correct.

    Lessons Learned

  • Native Navigators and the Cancer Continuum

    Lessons Learned

    As Navigator I have been approached while out in

    the public with citizens making comments about

    how much they are or have learned from the

    session and would like to have more.

    The most common remark is that they are going to

    be more aware of preventative screening and to

    make sure that their family members get them


    I am so glad that our (MCN) people are becoming

    more involved with Cancer and cancer awareness.

  • 29

    Lessons Learned

    Noel Pingatore

    Intertribal Council of

    Michigan, Inc.

  • Lessons Learned