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Patient Navigation: How Patient and Family Focus Groups Can Help

By Tricia Strusowski, MS, RN

October 16, 2016

Seeking a great way to enhance your navigation program and best understand the specific needs of your patients and families? Consider conducting a patient and family focus group. I have always gotten the best feedback and ideas for our navigation program from hosting a patient and family focus group.  And I now incorporate focus groups sessions into many of my cancer program site visits. It is easy, fun, and the rewards are tremendous.  The patients and families are so appreciative that their input is sought after and valued.

What is a Patient and Family Focus Group?  

Focus groups are a form of qualitative research, discussions with your patients and families to learn about their healthcare wants, needs, and perceptions.  All great patient experience outcomes begin with listening to the voices of the patients and their families, relying on their perceptions of healthcare to identify priorities and enhance performance improvement initiatives that can yield amazing results.

Some Sample Guidelines for Facilitating a Patient and Family Focus Group

The following guidelines will help foster a robust, information-rich discussion:

  • Invite 8-12 participants of different race, ethnicity, age, gender, and cancer disease site. Invite their family members and/or caregiver, so that you can conduct a separate caregiver group at the same time.
  • Hire or invite an expert facilitator to run the sessions.
  • Choose no more than 10 carefully selected questions that allow for open dialogue.
  • Tape your session as well as invite a scribe to assist with notetaking. (Be sure to inform participants that you will be recording the discussion.)
  • Review focus group participation ground rules with all participants.
  • Provide a light snack and/or small thank you gift for participating in the focus group discussion.

Introduction and Ground Rules for the Focus Group

Here are tips for getting the conversation started:

  • Introduce yourself and ask each participant to introduce themselves.
  • Explain that the cancer program wants to know what they like, what they don’t like, and how they feel programs might be improved.
  • Remind the group that the cancer program leadership is interested in both negative and positive comments.

Next, review the ground rules with your focus group members. Explain that the facilitator/moderator’s role will be to guide the discussion:

  • Assure participants of complete confidentiality.
  • Emphasize that there are no right or wrong answers, only differing points of view.
  • Ask participants to please speak one at a time so the scribe can accurately capture the conversation.
  • Remind everyone that they don’t need to agree with each other, but it’s important to listen respectfully as others share their views. Everyone should feel free to share openly.
  • Request that everyone please turn all cellular phones to vibrate. If anyone needs to respond to a call, please do so as quietly as possible and rejoin us as quickly as you can.

Some Possible Questions for your Focus Group(s)

  1. What was important to you and your family as a newly diagnosed cancer patient?
  2. What is important to you and your family now that you have started your cancer treatment?
  3. Were you aware of the support services at the cancer center?  What services would you like at the cancer center?
  4. Was the patient journal and/or patient educational materials you received helpful? How could they be better?
  5. Patient- and family-centered care is extremely important, what does this mean to you and your family?
  6. What is important to you and your family in a survivorship program?

Once your focus group is complete, consider keeping the momentum going by creating a Patient Caregiver Advisory Committee.  Learn more in this recent Oncology Issues article that explores how improving patient engagement can help to improve your cancer program.

Guest blogger ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

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