A Peer Navigation Program for advanced and metastatic breast cancer patients
Breast cancer is the leading cause of death among women in over 100 countries1. Patients, particularly in low and middle-income countries, face unique challenges resulting in delayed diagnosis and poorer outcomes2.
The ABC Global Alliance and Novartis have collaborated to develop this initiative with the goal of creating a program that addresses unmet needs of advanced and metastatic breast cancer patients through an ABC Peer Navigation Program.
Experienced patients, or Peer Navigators, hold unique insights into the experiences of living with metastatic breast cancer. Evidence shows that a Peer Navigation Program can benefit patients and alleviate distress. Additionally, findings prove that it can ultimately benefit the navigator and healthcare system3.
“This has been such an enlightening workshop series! Learnt a lot from everyone and the course materials really solidify what needs to be done as we embark on starting up an ABC Peer Navigation Program.”
At its core, this project thrives on the principles of sharing and support, as the sharing of resources, experience, and knowledge proves essential in helping individuals overcome the challenges posed by advanced breast cancer. Who better to offer support than those with firsthand experience? Listen to the video presentation.
Our ABC Peer Navigation Program connects advanced or metastatic breast cancer patients and ABC patient advocates with our Peer Navigators to provide mental support and resources customized according to local needs. The program is designed to address the unique needs of underserved advanced and metastatic breast cancer patients and the barriers to quality cancer care and support.
“All the training has been
extremely valuable for our group.”
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The ABC Peer Navigation Program is designed for patient organizations and offers tools to prepare them for implementing a program aimed at addressing the unique requirements of underserved advanced/metastatic breast cancer (ABC/mBC) patients and overcoming obstacles to quality cancer care and support. Patient organizations will collaborate with healthcare systems to provide the necessary navigation of patients to informational, logistical, and emotional support.
PNs can play an important and central role within the support and care network of an ABC/mBC patient. Training is necessary before a PN can begin to function in the role.
Topical areas of training include:
• Knowledge of the role
• Screening of patient concerns
• Advocating for patient needs
• Facilitating community connections
• Coordinating access to resources
• Effective and empathetic communication
It is equally important that the PN is comfortable with setting boundaries, maintaining confidentiality, privacy, and ensuring self-care.
Length of training is dependent on the potential PN requirements and the individual’s prior experience. At the end of the initial training program, the navigator will have the required knowledge and skills; learning “by doing” and through experience will allow the navigator to acquire greater comfort with the role. However, it is important for the navigator to embrace an attitude of lifelong learning and continued development. This can be done by keeping up to date with major developments within the field. Helpful approaches to continued education include connecting with other peer navigators and staying in touch with cancer networks and societies.
PNs can begin working with patients once they have successfully completed the training program. It may be helpful for a newly trained navigator to "shadow" an experienced PN or work with a peer support volunteer to better understand the operational needs of patients, whenever possible, before launching out on their own.
A PN is typically an individual who shares a similar experience with the patients. The focus of this program is on patients who are living with ABC/mBC, so, the recommendation is for the PN to be an individual living with ABC/mBC themselves. However, it may be challenging to identify peers with ABC/mBC to volunteer for the program. In this case, you need to assess the pool of potential volunteers and may want to consider breast cancer survivors, those without metastatic disease, or family members, friends or carers of an ABC/mBC patient. It is also important to remember that navigators are part of the patient’s care network team and as such an aligned team approach will work best. Navigation models can be re-configured based on local needs and available resources.
A PN does not need to have the formal education and background of a nurse or health care provider. However, the navigator should have a comfortable working knowledge of the disease and its impact on daily life (being an ABC/mBC patient will help with this), potential challenging situations that the patient is likely to face during the course of the disease, have the ability to actively advocate for the patient’s needs, as well as access to services and resources that the patient will need.
Yes, there should be a recruiting, screening and selection process that will serve to identify individuals who have the fundamental set of required skills and competencies to be effective navigators. PNs typically should complete a learning needs assessment prior to starting the training program to identify areas of strengths and gaps that may need to be addressed allowing for the organization to tailor their training plan.
Some level of formal documentation is critical to ensure the program’s success and to sustain it. For example, certain policies and procedures such as a contract and/or confidentiality agreement with the PN, training program and competency evaluations, emergency procedures and contact lists for the PN, documentation policies around ensuring privacy and confidentiality, and short/long-term evaluation metrics should be considered as part of the documentation process.
Yes, notes can be taken for personal use and may be required by the organization managing the navigation program. It is important to ensure patient confidentiality and privacy when making, storing and disposing of any records. Lay volunteers would not have access to medical records but may wish to or be required to keep confidential notes on their interactions and interventions with patients.
Screening and assessing processes, both used to understand patients’ needs and problems, are typically used to identify at-risk patients. Screening is often a rapid process of triaging – identifying patients who are at risk and determining the level of help required. Assessing includes in-depth collection and review of data to identify problems and organize a plan of care that may include the need for a PN. In some instances, patients may themselves make a request for a navigator’s support or a health care practitioner might identify patients who might benefit from a PN and refer the patient. The desire to have the support is criteria enough for a PN to be recommended.
Yes, in fact the first conversation that the navigator holds with the patient is when these formal logistical discussions, including place, frequency, time of meeting etc. should be finalized. This will create a clear pattern for the relationship and help the patient understand not only the scope of the relationship but also allow for the formal integration of the navigator into the patient’s care network.
Typically, the frequency of interactions is high early in the relationship. The need for support may ebb and flow depending on the treatment path that the patient is following, the progression of the disease and the individual needs of the patient.
Health care providers, nurses and PNs who give themselves in the support of others are at risk for compassion fatigue. Some of the signs that a PN may be suffering from compassion fatigue include irritability, poor sleep, negative attitudes, and personal detachment. Coping mechanisms such as reaching out to peers, supervisors, mentors, friends or health care providers can help. On occasion, the PN may need to take a break from the role. Self-care is a critical component of the navigator’s role, and it is extremely important for the PN to take responsibility for learning about health, wellness and symptoms to make effective decisions and avoid personal distress and fatigue.
Remember that it is not the role of a PN to provide medical, legal, or financial advice. However, navigators do need to know when medical/treatment information can sound confusing or there is insufficient information available. It is within the scope of the navigator’s role to be knowledgeable about credible sources of information where they can direct patients and to encourage patients to ask their physicians or nurses any questions they may have.
If a PN notices signs of anxiety or symptoms suggestive of depression in a patient, the navigator can offer comfort and empathy but should encourage the patient to reach out to local resources including psycho-social or mental health counseling. If a PN is concerned about the patient’s emotional condition, she/he should discuss the issue with the program supervisor to help determine if immediate action is needed.
Yes, in fact this is something that should be encouraged to help navigators with their self-care and subsequently improve their skills. Having a peer group of navigators to discuss commonalities, including successes and challenges, in patient situations – without breaching any patient confidentiality – can be beneficial.
Building organizational capacity to support a navigation program is important. The more a new program’s activities are embedded in the everyday workings of an organization, the greater the likelihood the program can be sustained. The success of a Peer Navigation Program is dependent on the sponsoring organization as well as the health care partners, and it is important to embed the program in the day-to-day operations of both.
Typically, PNs are lay volunteers and are important additions to the hospitals and health care providers’ network of care staff. They add a different dimension of support to patients with ABC/mBC. Patient Navigation Programs can be established by any number of organizations such as hospitals, NGOs, churches, or other affiliations.
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