Support and Care for Patients with Prolonged and Incurable Cancer

The Nova Scotia Health Cancer Care Program (NSH CCP) is working to learn more about Nova Scotians living with cancers that are long-term, incurable, chronic, or advanced. These cancers are incurable but still treatable. 

People living with long-term, incurable, chronic, or advanced cancer face unique challenges. Some of these challenges are because their cancer cannot be cured. Other challenges are because of the long period of time that they live with cancer. The NSH CCP wants to talk to people living with these kinds of cancers so we can understand the challenges and then make changes to the cancer care system to support their needs.                                     

We are looking for people to share their experiences at a focus group. Participants need to: 

• Have experience with the Nova Scotia cancer care system.
• Have been diagnosed with long-term, incurable, chronic, or advanced cancer OR have a family member/friend living with long-term, incurable, chronic, or advanced cancer.
• Be over the age of 18.
• Currently live in Nova Scotia.

Participation in this project is voluntary. If you cannot attend a focus group session you will be offered the option to participate in a one-on-one interview. The focus group/interview will be about one and a half (1.5) hours long. It may be in person or using video-conferencing technology (Zoom). You will be paid for your time. Every effort will be made to protect your privacy. If the results of the project are presented to the public, nobody will be able to tell that you participated in the project. 

During the focus group/interview you will be asked questions about:  

• Your experience with cancer care.
• Your thoughts on how cancer care could be improved.
• Your thoughts on what you think could be added to better support you. 

The project coordinator will work with you to arrange a date and time for the focus group or interview. All focus groups/interviews will be audio-recorded. Before you attend the focus group/interview, the focus group/interview facilitator will discuss the project with you, respond to any questions or concerns you may have, and confirm that you still want to participate. 

If you think you would like to take part, add your name to our list. We will follow up with you after you submit your information.

Main page of project.

Thank you for your interest to join this project as a Patient Family Advisor, sometimes also referred to as patient partners.

To learn more about becoming a Patient Family Advisor with this project, you can read this document: Patient Family Advisor Position Description

Our health care system learns from your experience. 

Official Project Title: Patient care navigation for people living with prolonged incurable cancer.

Project description: The Nova Scotia Health Cancer Care Program is working on a project focused on people who are living with prolonged, chronic, or advanced, incurable cancer while receiving treatments (often targeted treatments). These patients face unique barriers to care/gaps in care associated with living with an incurable disease, but due to their prolonged survival, they also face issues that may traditionally be related to survivorship.

We are looking to partner with people with lived experience of prolonged incurable cancer to be a patient partner on this project. The role of the patient partner as part of the project team is to ensure that patient-identified priorities are sufficiently considered and addressed in the process of the project.

This is a paid position compensated with an annual honorarium of $400.

The project is slated to start Autumn 2024 and the first phase of the project will take about one year. The requested level of involvement in the project entails participation in team meetings, reviewing feedback  and helping us identify priorities. (total time commitment approx. 1-2 hours a month).

Nova Scotia Health has made a commitment to involve patients and families in this project.

You can fill in this form to express your interest to join the project team.

No special knowledge or skills are needed. The ideal person is someone who can use their experience as a patient or family/caregiver to help shape the care we provide.

You might like this role if:

• You can talk about your experience to help us make improvements.
• You can share honest points of view in a respectful way.
• You are interested to work with a team made of health care providers, researchers and patients and families.
• You have time to attend virtual/online meetings once a month.

Those selected will need to:

• Be a person with personal or family/caregiver experience with a prolonged or incurable cancer.
• Be 18 years of age or older.
• Sign a confidentiality agreement with Nova Scotia Health.
• Declare any potential conflicts of interest.
• Be able to commit to attend meetings typically during business hours.

Once you fill out the form below, someone will reach out to you about next steps!

Please Note:  Current NS Health employees, Hospital Foundation members, Community Health Board members, and elected officials are not eligible to apply. NS Health is committed to being a workforce that is free of discrimination, values diversity and is representative, at all job levels, of the people we serve. Those selected to become a Patient Family Advisor on the committee will be paid an annual honorarium. 

Please contact Dr. Julia Kaal if you would like to learn more and/or are interested in being part of the project.

Julia Kaal, PhD

Embedded Scientist

Cancer Care Program

Nova Scotia Health

Phone: (902) 483-4261

Email: julia.kaal@nshealth.ca

KJuliaKaal@dal.ca

Pronouns: she/her