The Nova Scotia Health Cancer Care Program is recruiting Patient and Family Advisors for a project on understanding the experiences of people dealing with prolonged, chronic or incurable cancers. Advances in cancer treatment mean more people are living for years with incurable cancer. However, this growing population faces unique challenges, including financial strain, work disruptions, symptom management, and maintaining quality of life. Despite awareness of these patients, there are currently no tailored care pathways or services to meet their specific needs.
The goal is to create a model of care that supports the needs of people living with prolonged, incurable cancer. The Patient and Family Advisors will be full and equal members of the project team and provide the patient and family voice/perspective in making decisions and setting priorities.
Role of the Patient Family Advisor:
- Attend meetings
- Partner with staff to ensure patient and family centered care is at the core of all decision making.
- Be involved in all stages of the project and their involvement will inform key project outcomes such as:
- Drafting focus group guides
- Co-facilitating the respective patient or caregiver focus groups
- Data analysis and interpretation (i.e., validating themes from the analysis of the focus group data).
- Collaborate in the ‘knowledge translation’ part of the project. That is, taking what we learn and putting it into practice.
Eligibility
- Have an understanding of or experience dealing with prolonged, chronic or incurable cancers
- Received care within the NSH Cancer Care Program
- An ability to communicate the perspective of patients and families
- Good communication skills
They invite diverse views to join this project. Ideally, they want to have some experiences which represent:
- 1 patient
- 1 family member or caregiver
- 1 person with a rural experience
- 1 person who has experience not having a family doctor or nurse practitioner while dealing with prolonged, incurable cancer.
Time commitment
This project started in December 2024 and is slated to last for a total of three years (until 2027). Patient Family Advisors do not have to commit to the full duration of the project but a minimum of a 12-month involvement would be preferable. Project team meetings will be monthly or bi-monthly and are held during business hours, Monday-Friday 9 a.m. – 6 p.m. Meetings are virtual via Zoom or MS Teams. Any opportunities for in-person meetings will be planned in advance and any travel or hotel costs will be reimbursed.
Appreciation
Compensation will be offered.