Contributions to the literature
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By being among the most significantly impacted by the implementation of the PAROLE-Onco program, APs are in a strong position to evaluate the program’s implementation and identify the factors that would best facilitate their integration.
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Misunderstandings about APs’ roles can delay a change in culture in healthcare establishments and make APs’ accompanying services more challenging to promote.
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Assigning certain powers to APs, via co-construction and co-decision methods, is conducive to ensuring a successful change in culture within healthcare establishments.
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Working proactively with APs on organization, leadership, resources, and status factors will allow patients dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.
Introduction
Theoretical frameworks
Methods
Settings
Data collection
Data analysis
Results
General results
Establishment | Program | Number of APs in T1 | Number of APs in T2 |
---|---|---|---|
E1 | Breast cancer | 5 | 9 |
E2 | Breast oncogenetics | 4 | 2 |
E3 | Breast and gynecological cancer | 5 | 14 |
E4 | Breast cancer | 3 | 1 |
Governance
Pushing boundaries
"There are maybe 50 people, and when I get to these organizational committees, I feel like I'm there because up there, they want patient-partners everywhere, but basically, if they could have none, that would be fine." (E3-03)
"When I sit on committees, it's a bit hard to get my bearings, to know who's who, how decisions are made and so on." (E1-01)
"We're not really involved in the organization, so our effect is minimal. The day we're really integrated, we'll be able to talk about success, but not now." (E4-03)
‘’Over time, the professionals began to understand why we needed to be present on committees and involved in the decision-making. We gradually took our place, without pushing anyone too hard, but by calmly bringing our ideas to the table and recognizing how our perspective could help them in implementing the intervention.’’ (E1-01-T2)
Shared leadership
‘’I took part in a lot of meetings at the beginning, but I had the impression that they weren't really helping the project to move forward. During the meetings, I gave my point of view, but I didn't see any action to implement it.’’ (E3-02-T1)
‘’The slowness of the project's implementation is, I think, attributable to the clinical staff’s lack of involvement, which partially explained the few referrals made to the APs.’’ (E4-02-T1)
‘’A few months ago, the facility hired a coordinator to facilitate our contact with patients. This individual promotes the program to clinicians and gives us access to clinical information on patients, so that we can direct them to the right accompanying patient.’’ (E1-06-T2)
Ethical guidelines
"We really saw a change in attitude from the professionals over time, when they got to know us and saw that we were very aware of the limits of our interventions." (E4-03-T2).
"The reluctance of the doctors was overcome by the presentations, by the reassurance, on an ethical and legal level, of the legitimacy of the accompanying patients, and by the fact that we were introduced to the team." (E3-05-T2)
Culture
Opportunities for discussion and dialogue
"When I had access to the patients, I thought it was important to be able to share the information gathered with the team when it seemed relevant, but this was not well organized. As we work mainly by telephone, it's important to have someone to help us keep in touch with the clinicians." (E1-05-T2)
"Between us and with the support of the research team, we have built a logbook that we fill in after each interview with the patients. It's factual information, and if there's anything important that could change the medical course of action, we also report it verbally to the PA coordinator." (E3-04-T1)
Promoting the program
Recognition
‘’During our Community of Practice meetings, we invite healthcare professionals to meet with us and discuss our work with them. This enables us to better perceive our added value in their work and observe how we can better meet their needs and those of their patients.’’ (E3-07-T2)
Resources
Time
Office space
‘’We don't have a space where we can meet with patients in the facility, which poses a real problem in terms of being able to talk safely. It would be very useful if we could have an office where we could take time with the patient and do it in a place where there's no risk of being overheard.’’ (E3-02-T1)
Financial compensation
‘’Personally, I'm not in it for the money. Then, I don't think it would be a means, unless you had an extraordinary volume, you know it wouldn't come in the first place, it wouldn't be a facilitating means. You're not doing this for money. You're really doing this to invest yourself, and then try to give as much as you can [...].’’ (E1-03-T1)
‘’The matter of remuneration is complex. It can't be summed up as a yes or no answer. It depends on the time spent, the activities carried out, the status of the APs, who may need money to be able to invest, or on the contrary, if they are paid, they may not be able to benefit from other financial support.’’ (E2-02-T2)
Tools
Community of practice
Notes in patients’ files
‘’From the outset, we obtained from the establishment the possibility of having a sheet in the patient's file dedicated to our interventions. This enables us to make a summary of our consultations with patients that professionals can consult.’’ (E2-01-T2)
‘’After each intervention, we fill in the logbook, which is shared with the AP coordinator.’’ (E3-03-T2)
Phone meetings
‘’Initially, I began my accompanying work in the presence of patients. Then with the pandemic, we no longer had access to patients. So we started doing it over the phone. I wasn't in favour of it at first, but then I realized that it was easier for patients to open up and share their emotions.’’ (E2-01-T1)