Integrating Accompanying Patients into Clinical Oncology Teams: Limiting and Facilitating Factors

doi:10.21203/rs.3.rs-2802271/v1

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Research Article

Integrating Accompanying Patients into Clinical Oncology Teams: Limiting and Facilitating Factors

https://doi.org/10.21203/rs.3.rs-2802271/v1

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Journal Publication

published 30 Jan, 2024

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Objectives

Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) in healthcare teams to improve cancer patients’ experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients dealing with cancer. We aimed to explore APs’ perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams.

Methods

A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and two years afterwards (T2). Limiting and facilitating factors of APs’ integration into clinical teams were analyzed in terms of governance, culture, resources and tools.

Results

The most significant limiting factors raised by APs to be integrated into clinical teams were: governance involvement, organizational boundaries, team members' availabilities, and confusion about the specific roles played by APs. Communication challenges were also raised, leading to inadequate promotion of the program to patients. The lack of time, space and compensation were also mentioned as limiting factors. Creating opportunities for team members to meet APs, building trust and teaching team members how APs’ activities are complementary to theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in the PAROLE-Onco program promotion to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs’ added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need.

Conclusion

Over time, APs were able to identify the best factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources, and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

Accompanying Patients

Patient Advisor

Peer Support

Oncology

Patient Care Experience

Clinical Team

Facilitating Factors

Barriers

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 facilitating factors to their integration.
Misunderstandings about APs’ roles can delay a change in culture in healthcare establishments and make APs’ accompanying services more challenging to promote.
Assigning certain powers to APs, via co-construction and co-decision methods, is conducive to ensuring a successful change in culture within healthcare establishments.
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.

It is estimated that in 2022, 60,000 Quebecers were diagnosed with cancer, which represents 158 new cases per day¹. This number has been on the rise for several years and is expected to increase further in the coming years due to testing delays following the pandemic². The assessment of cancer patients’ experience highlighted that the most lacking aspect among the six areas of patient experience assessed in health and social service organizations in Quebec and across Canada was that of emotional support.³ This need is all the more significant in the context of a pandemic where patients expect and hope to receive emotional support.

To meet this need, the PAROLE-Onco program⁴ was developed as part of a project funded by the Canadian Institutes of Health Research and the provincial Ministry of Health and Social Services and set up in four different healthcare establishments in Quebec, Canada. It revolves around integrating into clinical teams accompanying patients (APs), who are patients having acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals (HPs)⁵. They are trained to be active listeners, to know when and how to tell their story, to help the patient navigate their care and to liaise with the clinical team. In oncology, peer support has usually been provided by "patient navigators," a role assigned to nurses, social workers, educators, as well as to former patients⁶. In contrast, APs are patients themselves who can transform their experience into a resource available to other people, which contributes not only to enhancing their own health and self-esteem but also to patients undergoing a cancer treatment journey. In the program, selected APs were trained and coached on how to intervene with patients, while giving them space to innovate in their own ways to accompany patients based on their specific experiential knowledge. Since 2019, HPs have introduced, during medical appointments with patients, AP accompanying services as an additional resource, and patients are absolutely free to accept or refuse such a resource. Research coordinators or clinical staff members collected essential clinical data on patients who had anonymously and confidentially consented to participate to match them with an AP with a similar profile. Patients then made appointments with their AP according to their needs. Initially, each site recruited at least two APs and, over time, recruited and trained additional APs to meet patients’ needs.

By helping patients access healthcare, patient navigators have facilitated and hence accelerated diagnosis and treatment journeys⁷. Indeed, patients have benefited from these programs as it has been reported that such programs have been instrumental in increasing adherence to treatment⁸, bringing comfort⁹ and guiding patients through the healthcare system⁷. They can also improve patients’ quality of life by promoting healthy lifestyle habits and reducing symptoms of anxiety and depression¹⁰. Our parallel study on APs’ perspectives regarding their activities within the clinical oncology teams has shown that APs provide emotional, informational, cognitive and navigational support to patients by mobilizing their experiential knowledge¹¹. APs help patients feel understood and supported, alleviate stress, and become partners in their care. They also alleviate the clinical team’s workload by offering a complementary service through emotional support, which can calm patients down and help them be more prepared for their appointments with health professionals (HPs). They communicate additional information about their patients’ health journey, which makes appointments more efficient for HPs. When APs accompany patients, they feel as if they can make a difference in patients’ lives. Their activities are often perceived as an opportunity to give back but also as an excellent way of giving meaning to their own experience, in turn serving as a learning experience.

Despite these positive effects of APs’ intervention on patients, on the clinical team and on themselves, their overall integration has been rather complex. While a few studies have assessed the barriers and facilitating factors of integrating peers in different healthcare settings^12,13, including oncology^14–16, APs’ perspectives on oncology clinical teams continue to be poorly documented. This study addresses the inner settings, individuals, and implementation process domains and related constructs regarding implementation of the PAROLE-Onco program in four institutions knowing that insufficient literature on APs’ perspectives regarding limiting and facilitating factors in their integration into the clinical oncology teams.

Theoretical frameworks

We used the framework developed by Pomey et al.¹⁷ based on Parsons’ model¹⁸ to interpret our results. This framework identified four categories of factors relevant to analyzing the implementation of interventions: (1) governance, defined as “the conduct of collective action from a position of authority”¹⁹; (2) culture, defined as “underlying beliefs, values, norms and behaviours” including physicians’ involvement²⁰, (3) resources, defined as human, financial, infrastructural or informational, and (4) tools, defined as the instruments or procedures considered helpful in implementing a strategy. In addition, we mobilized the Consolidated Framework for Implementation Research (CFIR)^21,22 to discuss our results to be sure to cover all aspects of factors that can interact during the integration of complex intervention.

Data was collected on two separate occasions, when the PAROLE-Onco project was first implemented (T1), and two years later (T2). Our approach to reporting this qualitative study is based on the Standards for Reporting Qualitative Research (SRQR; Additional file 1)²³.

Settings

The four establishments included in this study are: the Centre hospitalier de l’Université de Montréal (E1), the Centre Hospitalier Universitaire de Québec-Université Laval (E2), the Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l’Est-de-l’Île-de-Montréal (E3), and the CIUSSS de la Mauricie-et-du-Centre-du-Québec (E4). Each establishment recruited their own APs (29 in total). The programs in which APs were involved include two in breast cancer (E1 and E4), one in breast oncogenetics (E2), and one in breast and gynecologic cancers (E3).

During T1, E1 had 5 APs in the breast cancer program, E2 had 4 APs in the breast oncogenetics program, E3 had 5 APs in the breast and gynecologic cancer program, and E4 had 3 APs in the breast cancer program again. During T2, E1 had 9 APs in the breast cancer program, E2 had 2 APs in the breast oncogenetics program, E3 had 14 APs in the breast and gynecologic cancer program, and T4 had 1 AP in the breast cancer program.

Data Collection

The study employed semi-structured interviews and focus group discussions to collect data, as described in our previous paper¹¹. APs from the four establishments were invited to participate in both T1 and T2. Participants were contacted by email or phone and provided an electronically signed consent form, which was approved by the Research Ethics Committee (17.260). No compensation was offered for participation. All participants gave their consent to take part in the research and be recorded. Due to the COVID-19 pandemic, interviews were conducted by telephone or videoconference, and focus group discussions were carried out through videoconference. During T1, the questions (found in the supplementary material) were designed to identify APs’ perceptions of the limiting and facilitating factors of their integration into the clinical oncology teams. The questions were co-created and pilot-tested with two patient-researchers who were included in the research team. The T1 data collection events took place four months after APs were introduced into the four establishments. Two years later, during T2, the data collection aimed, by presenting the T1 results, to evaluate changes in APs’ perspectives on the limiting and facilitating factors of their integration into the clinical oncology teams. APs discussed changes in elements since the new APs joined the team or the emergence of new elements. Thus, no interview guide was used in T2. The interview transcripts and focus group discussions were prepared, and all data collection events were conducted in French before being translated into English.

Data analysis

To analyze data, we followed the six-step guideline of Braun and Clarke²⁴. First, all interviews were transcribed to familiarize us with the data. Second, several meetings between the authors, including two patient-researchers, were held to construct the codebook that contained two main categories: 1) the limiting and 2) the facilitating factors of their integration into the clinical oncology teams. We then used a thematic analysis approach to better “understand a set of experiences, thoughts, or behaviors” pertaining to these categories²⁵. We used an inductive approach to theme identification — or patterned responses that occurred in the dataset²⁵. Coding was done using the QDA Miner Software (version 6.0.2.). Steps four and five consisted of grouping some themes together according to the framework developed by Pomey et al.¹⁷.

General results

In total, for the two rounds of data collection (T1/T2), we were able to interview 20 different APs (T1: n = 10, T2: n = 10).

There were two types of data collection events: focus groups and interviews. In T1 (the first round of data collection), there were 2 focus groups with a total of 7 participations, and 8 interviews with a total of 8 participations. This means that there was a total of 15 participations in T1. In T2 (the second round of data collection), there were 5 focus groups with a total of 19 participations, but no interviews. This means that there was a total of 19 participations in T2.

It was found that out of the total of 15 participations in T1, 5 APs participated in 2 events. Thus, it can be concluded that there were only 10 different APs in T1. Similarly, in T2, out of the total of 19 participations, 3 APs participated in 2 events, indicating that there were 16 different APs in T2. Further analysis revealed that 6 of these APs also participated in T1. Hence, it can be inferred that there were 10 new APs that were interviewed in T2 since T1. In phase T1 of the study, all 10 APs who were involved in the four healthcare establishments and had accompanied patients agreed to participate. One focus group with E4 was conducted in June 2019 (n = 3 participants). Another focus group was held in September 2019 with E1, E2, and E3 (n = 4). The two focus groups were facilitated by the lead researcher or a research assistant and lasted 58 and 178 minutes, respectively. Additionally, eight individual interviews were conducted between April and May 2020, ranging from 30 to 63 minutes in duration. Out of the 10 APs, five participated in both the individual interviews and focus group data collection events.

During T2, 16 out of 20 APs who accompanied patients agreed to participate in the study. Four did not respond to our invitation. Out of the 16 participants, 6 had taken part in T1. The remaining 4 APs who had participated in T1 were not invited to participate in T2 due to personal reasons, as they were no longer involved in the PAROLE-Onco project. Therefore, 10 new APs were interviewed in T2. An initial focus group was conducted in September 2021 with E1 and E3, which had three participants and lasted for 35 minutes. At the time of the focus group, the APs had been accompanying patients for a period ranging from 12 to 22 months. Additionally, four other focus groups were held between March and May 2022 for each establishment, involving a total of 16 participants and lasting between 80 and 115 minutes. The APs had been involved for a range of 6 to 32 months during this period. The focus groups were led by either the principal researcher or a research assistant. Three out of the 16 APs participated in two data-collection events.

The data shows that the number of participants increased in all establishments except for E4, where the number of participants decreased from 3 in T1 to 1 in T2. In E1, the number of participants increased from 4 in T1 to 7 in T2. In E2, the number of participants increased from 1 in T1 to 2 in T2. In E3, the number of participants increased from 2 in T1 to 6 in T2. Therefore, the largest increase in the number of participants was observed in E3, which saw an increase of 4 participants from T1 to T2.

The majority of participants in both rounds of data collection were aged 55–64 years old (n = 5 in T1 and n = 7 in T2), followed by those aged 65–74 years old (n = 3 in T1 and n = 4 in T2). The number of participants born in the province of Quebec increased from 9 in T1 to 14 in T2. In terms of education, most participants in both T1 and T2 had a university degree. The number of participants who reported working full-time increased from 0 in T1 to 3 in T2, while the number of retired participants decreased from 7 in T1 to 6 in T2. Breast cancer was the most common cancer type among participants in both rounds of data collection.

Governance

Pushing boundaries

In both T1 and T2, APs mentioned feeling powerless inside a system that seemed too big for them, and that it was excessively difficult to take actions that could generate significant changes due to the administrative burden. Hence, they considered that the organizational boundaries limited their role by preventing a certain cohesion between the work done by APs and that performed by the healthcare team in addition to slowing down the decision-making process which is so critical to the project’s growth.

To facilitate their integration, in T1, APs suggested on one hand that their integration should be done slowly, because they "don't want to hurt people and [...] then have to go back twenty steps" (E1-02). However, they needed to push boundaries because it was not always easy to be accepted by the team.

Some HPs also tried to integrate APs in decision-making committees, because “no decision should be able to be made if there are no patient-partners” (E3-03). In T2, APs reinforced the benefits of having joined in gradually as they could clearly define their role within the rest of the health team and reassure them that their patient-caregiver relationship would not be jeopardized by the APs’ involvement.

Shared leadership

Some APs also mentioned in T1 that there was a lack of energy put into the project, especially in integrating them into the team. It was, among others, the HPs’ lack of interest that explained why things were advancing slowly at the beginning. Despite the fact that some APs had put a lot of energy into the PAROLE-Onco project, it felt as if it was not sufficient, and it remained the case in T2. It was observed that even though ideas were suggested during team meetings, no real actions were taken to act on those ideas. In T2, the emphasis was put on the fact that the project’s slow pace was a direct consequence of the clinical staff’s lack of involvement, which explained, among other things, the few referrals made to the APs.

One facilitating factor suggested in T1 for project implementation is that the clinical team, not the managers, must prompt the initiative mentioned by APs that they should be involved in promoting the project, and that it all starts by gaining the trust of team members. In T2, they specified a need for the physical presence of an AP coordinator acting as a carrier of the project and a leader in the hope that a certain degree of motivation towards its continuous betterment would be maintained and reinforced.

Ethical guidelines

In T1, APs mentioned that they were concerned that some HPs would regard their interventions negatively out of concern that APs might discuss clinical details about treatments with patients, which they are not trained to do. APs felt that the HPs would not trust them. In T2, APs even went so far as to say that they were perceived as a burden that only “would bring extra work” (E4-22) to the rest of the team, explaining HPs’ resistance to HPs’ integration. However, to some APs, this resistant attitude is less present than in T1.

As facilitating factors, APs in T2 insist on the need to clearly inform the entire clinical team, including senior management, about APs’ activities in order to be accepted by their colleagues and to ensure understanding of the complementary aspect of their work to the PAs. This could be done by introducing them through the health institution’s magazine or through medical staff, for example.

Culture

Opportunities for discussion and dialogue

Related to the perception that the culture was not seen as being open in T1, APs had trouble meeting the managers to discuss implementation of the project and their interactions with patients. Once the project was implemented, APs in T2 found that they did not have many opportunities to share with the rest of the team their feedback on the implementation of the project and roles with patients. In fact, during discussions with patients, APs gathered very useful information for improving the quality of care. Interactions with other HPs were limited. Hence, it was challenging in T1 and T2 to promote the project to patients. One reason information about APs’ services was not transferred to patients may have been because some clinical team members were not even aware that the project existed.

In the proposed model, where APs are integrated into clinical teams, the transmission of information between APs and HPs is essential. In practice, however, this transmission is not homogeneous across the establishments. In T2, at two sites (E2 and E3), APs now have easy access to HPs. They feel that “an openness is being created” (E2-01) by HPs and “they are very attentive” (E2-02). However, in the other two sites (E1 and E4), these connections continue to be difficult to establish.

To facilitate communication and dialogue, APs in T1 mentioned increasing opportunities for contact with HPs in order to receive verbal feedback that would help them adjust their work to their patients’ needs, and thus maximize therapeutic follow-up provided by HPs. In T2, they cited a potential satisfaction questionnaire that would be systematically offered to the team. In turn, having the opportunity to talk with HPs could help them improve services offered to patients, but not all APs are comfortable providing them with information.

Promotion of the program

It is important to note that although some team members were well aware of APs’ accompanying services, they did not necessarily always pass on the information to patients. One reason addressed both in T1 and T2 as to why HPs were not promoting APs to their patients may have been because they did not see the having APs in their team as a value-added.

The main facilitating factor that would improve promotion of the program to patients is the acceptance by the clinical team, and this also entails having a clear understanding of the roles of every member in the team. Another element mentioned that could improve communication is to send reminders to physicians to discuss the program with patients during their medical appointments. Some APs in T2 also mentioned that they could be the one promoting the program to patients.

Recognition

The limited collaboration between APs and HPs, as they were often excluded from discussions and decision-making, could be partly responsible for the lack of recognition of the APs’ activities. APs felt as if the institution approved of the program and their inclusion in the team, but in practice, some felt insufficiently valued. They perceived that the unappreciative attitude of some staff members was even making APs question the relevance of their own role with patients.

It is nevertheless important to mention that in T2, there were mixed opinions as some APs stipulated that HPs begin to include them in the process of treating patients, to consider their opinion and recognize the positive impacts of their role on patients. This could be explained by the fact that some of them were more present on the hospital premises, whether because they themselves were still in remission or otherwise, allowing them to have more contact with the rest of the team, and thus to have more patients’ references. Also, a sociable attitude and active involvement within the healthcare establishment’s associations, for instance, would have a positive impact on their integration.

Resources

Time

From T1 to T2, APs felt that the clinical staff had insufficient time to allocate to the program, considering that they were overwhelmed by their work. This could have led to the clinical staff’s insufficient involvement in promoting APs’ services which, according to some APs, could have been partially responsible for the PAROLE-Onco program growing at such a slow pace. They added that, ironically, it is also this issue of time that set APs apart, emphasizing the importance of their presence within the clinical team.

Office space

APs in T1 also mentioned that they did not have a dedicated space, such as an office, assigned to them for them to be able to meet their patients in a trusting and confidential environment. Providing them with a peaceful and private area conducive to patients feeling comfortable to talk was thus mentioned as a potential solution.

They also mentioned their need for an office to be able to promote the services offered and to enhance communication with the clinical staff. In an office, they could also discuss with other APs experiences they had had with their patients and share tips they had developed, for instance.

Another suggestion was to assign one PA the role of representing the Parole-Onco program for the clinical staff and the patients, to be able to provide essential details about the program when approached about it. Having an office inside the health establishment, this PA would be responsible for by coordinating discussions and assigning patients to different APs who would be working remotely. The PA would also ensure solid communication between the clinical staff and the APs by facilitating, for instance, the transfer of feedback from one stakeholder to another.

Financial compensation

In T1, not having financial compensation for their work was discussed as having limiting impacts on their motivation to persevere in the program while also reinforcing the idea of lack of recognition they were dealing with. As there were multiple expenses that came with their accompanying role, such as travel and parking, they felt a need for financial support in order to declare their legitimate presence within the clinical team. Some suggested that they could be provided with a budget, which would compensate them for the cost of the parking ticket, mileage charges or lunch at the cafeteria for instance. However, in T2, even if these measures were implemented, APs did not consider financial compensation an essential factor in their involvement in the program, as accompanying patients fulfilled their desire to help others and give back. Nonetheless, some APs suggested that the volunteer aspect of the program be maintained for some, and that other APs, who would be taking on more demanding tasks such as physically accompanying patients to their appointments, be remunerated. Others proposed waiting until the program reached a larger scale with a number of volunteers substantial enough to justify implementing a form of salary.

Tools

Community of practice

In T1, APs mentioned that having a community of practice could be beneficial for them to improve their work. In T2, PAs have seen the benefits of having this space of sharing for the community, although the community of practice only exists in two establishments. Thus, some APs suggested implementing meetings at a provincial level from different establishments to be able to share their knowledge, answer each other’s questions and recruit more APs. They believe that if they “could feed off of, then equip [them]selves with the experiences of other sites, it would be greatly beneficial" (E1-01).

Notes in patients’ files

Another tool that would be useful to APs is adding notes in the patients’ medical files for HPs to consult. However, only one establishment has implemented this system (E2) on a regular basis. Another way of transmitting information on patients to HPs is to maintain logbooks which are intended for research purposes but could also be used in the clinic. Some APs use them to relay information to the team.

Phone meetings

In T1, APs mentioned that due to the COVID-19 pandemic distancing measures, accompanying sessions were done by phone, which was more effective than what had initially been anticipated in T1. These telephone meetings were less emotionally charged for APs as the remote nature helped them distance themselves from their patients’ words and, as a result, a more objective environment could be fostered. Telephone meetings also provided an intimate environment of communication and discussion that encouraged patients to open up and “ask questions that they might not have asked [face to face]” (E2-01).

The purpose of this study was to better understand, from APs’ perspective, the uncertainty and ways to improve their integration into clinical oncology teams, which are two key elements while implementing complex intervention²⁶. Although there are areas of continuity between T1 and T2 in the identification of limiting and facilitating factors, APs offer a more concrete evaluation of the needs in T2. For example, in T1, APs addressed organizational heaviness and a lack of energy to implement PAROLE-Onco as the main limiting factor. Conversely, in T2, they talked about solutions, such as having a resource person and meeting directly with the team members to convince them and reduce the reluctance and lack of understanding about their activities. A satisfaction questionnaire was also suggested to be conducted to collect comments and improve their practices. This change in vision may come from the experience of APs who, over time, were able to better analyze and identify the best factors for successful implementation. Also, APs in T2 encountered less resistance than in T1. This can be seen as a testament to the change in culture that has taken place since the beginning of the project to not only implement, but now to sustain the project, particularly in three establishments.

To better interpret the results, compare with the literature and draw lessons for the implementation of complex interventions, we mobilized the Consolidated Framework for Implementation Research (CFIR)^21,22.

Inner settings

This domain corresponds to the healthcare establishments in which the accompanying services by APs were implemented^21,22. Retained constructs include relational connection, culture, communications and available resources solicited during the implementation process.

Relational connection

In terms of high-quality formal and informal relationships and networks, it has been found that facilitators included robust administrative support, program functioning and team cohesion^13,15. Conversely, developments in mental health peer support programs highlighted the fact that implementation in a healthcare setting can be hampered by role confusion, inadequate training of HPs working with peers or lack of professional development, and the slow pace of development^{13,14, 27–32}. This is consistent with some of our results in terms of governance, where organizational boundaries first slowed down the decision-making process essential for the program’ growth. Although APs’ integration was slow at first, it allowed them to take time to reassure team members that their role as APs and their relationship with patients were important and safe. In the literature, Brodar et al.³³ showed that some HPs may have concerns that peers could potentially encourage patients not to trust their medical provider. To avoid HPs perceiving the addition of APs as a failure in developing a professional relationship with patients and resulting in overlapping responsibilities, it is crucial that APs’ roles be well defined by clearly differentiating the tasks and expectations for each party concerned³⁴. Therefore, harmonizing APs’ roles with the rest of the team could help prevent role confusion and increase APs’ recognition, leading to a higher impact of their contribution³⁵. To this end, APs suggested teaching HPs how APs’ activities are complementary to theirs and how they could work with APs. It was found that providing formal direction and implementing training for peer staff about being workers and for non-peer staff and patients about working with peers in fact helped to integrate peer providers into clinical teams³⁶.

Additionally, inadequate staffing, heavy workloads and lack of time were previously identified as being limiting factors^14,32. Indeed, as APs identified, staff members usually have an already substantial workload and therefore have inadequate time to allocate to the program. However, entrusting APs with a certain task-sharing role could help alleviate the workload of team members.

Culture

In terms of culture, there is a sub-construct called recipient-centeredness, which is the sharing of values, beliefs, and norms around caring, supporting, and addressing the needs and welfare of recipients which is, in this case, patients^21,22. In the literature, negative stakeholder attitudes and reluctance on the part of professionals were identified as barriers, with concerns about team cohesion and staff members being unfamiliar with or closed to the idea of peer support^13,32. This aligns with our results, where a few APs perceived that some HPs were unaware of the PAROLE-Onco program or did not see having APs in their team as a value-added. This is partially the result of the initial misunderstandings physicians may have about APs’ role in the care team and their concerns that they might wrongfully discuss clinical details of which they do not have a clear understanding. As a result, APs suggested that opportunities be created for team members to meet APs and build mutual trust, which is recognized as a winning strategy³³. Such opportunities could include high visibility at staff meetings, marketing of peer support, and enlisting a physician champion¹³. The objective is to establish alignment between the team members and the program’s goals, with the support of internal leadership, which was proven to be a facilitator for success¹⁴.

Communications

Team cohesion can also be enhanced through communication¹³. At the beginning of the project, APs cited communication challenges with the clinical team and managers and having few opportunities to discuss the program’s implementation and continuous improvement. Similarly, Pratt-Chapman et al.¹⁴ found that barriers to communication resulted in less efficient care coordination. To increase visibility, ongoing and repeated reminders that peer support is available through email notifications or distribution of marketing material could be beneficial¹³. Indeed, frequent communication with HPs has shown to be helpful in peers meeting patients’ needs through their discussions and in helping to successfully implement the peer support program^15,35,37. Similarly, APs mentioned that creating opportunities to have discussions with team members is essential for ensuring their work is recognized. These discussions would allow them to receive valuable comments and observations to so they could adjust their work and provide feedback to clinical teams in an effort to improve the services offered to patients. Having a program evaluation with patient- and system-level outcomes could help with leadership support and improve the quality-of-service provided^13,33. The evaluation results could be essential to showing the impact internally and to supporting the program’s growth in terms of being better aligned with patient needs¹⁴. However, our results show that these meeting opportunities are not homogeneous among establishments, where APs in E2 and E3 have more direct chains of communication with HPs. The main facilitating factor found by APs was to have a resource person responsible for facilitating interactions between APs and the clinical team. Therefore, developing strategies to improve communication with APs and staff members would be an important driver for ensuring the project’s sustainability¹⁶.

Available resources

Space is a subconstruct that was discussed abundantly by APs. Having a clinical office space is described not only as a facilitating factor, but also as being instrumental in the success of APs’ integration^12,13,35. It enables them to meet with patients and team members and explain the program to them, meet with other APs to share experiences, and coordinate the program by assigning patients to other APs. In our case, having a space was mentioned as being a symbol of recognition. As suggested by Huntingdon et al.³⁷, acknowledgement from the clinical team and enhancement of APs’ legitimacy have the power to help boost APs’ confidence and interest in their work. Similarly, having financial compensation was cited as an incentive for persevering in the program and being valued, even if it is not considered as a key factor in APs’ involvement in the program.

Materials and equipment constitute another CFIR sub-construct relevant to this study. Our results show that E2 and E3 stood out by having APs’ notes added automatically in the patients’ medical files or by maintaining logbooks. Similarly, Mayer et al.³⁵ found that the use of technology to coordinate care was a facilitator in successful integration by facilitating the transmission of information to the clinical team. Moreover, our results show that having the ability to accompany patients over the phone was beneficial for both APs and patients, as more flexibility is offered, and unnecessary travel is limited. Similarly, Brodar et al.³³ found that many patients in different peer support programs received support through multiple media platforms. Additionally, Loo et al.¹⁵ developed structures to support cross-institutional networking which allowed patient navigators to communicate with peer navigators across different clinical sites. Similarly, APs mentioned that having a community of practice inter-establishments creates a space to share tips and tricks with fellow APs with the objective of bettering their practice.

Individuals’ domain

This domain corresponds to the roles and characteristics of individuals. Most constructs refer to leaders having different levels of authority, having influence over others and leading efforts to implement innovation^21,22. Indeed, Pratt-Chapman and al.¹⁴ found that the lack of a program champion having authority was a main limiting factor. Likewise, our results show that the change in chief executive officer (CEO) led to one healthcare establishment’s disengagement from the project. It is, therefore, recommended to have internal leadership to ensure that patient navigator programs are not only sustained, but that they also grow¹⁴. A driver is intended to develop an enabling environment that assigns certain powers to patients to lead the change¹⁶. Since the lack of energy and time the clinical team dedicates to promoting the project can lead to a lack of patients’ references to accompanying services, APs can also take on the role of leaders in promoting the program. However, for now, the recognition of APs’ status in the healthcare establishments is not clear. This situation can lead to APs’ disengagement³².

Implementation process domain

Referring to the activities and strategies used to implement the innovation, this domain includes two constructs, namely teaming and engaging, that are particularly relevant to this study. The first one refers to intentionally coordinating and collaborating on interdependent tasks, and the second one refers to attracting and encouraging participation in the project’s implementation and sustainability^21,22. We find that two of the four drivers identified by Tourniaire et al.¹⁶ are related to these constructs. They first suggest co-constructing and agreeing on a transactional object. An example is to co-construct a mission statement to adopt a systematic approach to the accompanying service that is offered to patients. This refers directly to shared leadership, i.e. having APs involved in decision-making committees to co-construct the implementation strategies to each establishment through a shared vision to ensure the project’s sustainability. Having APs also included in multi-disciplinary team meetings can help foster team communication and provide them with information to better coordinate care for patients¹⁴. Another driver referred to co-deciding the functioning and articulation of the team. Since each establishment is different, it is important to accommodate each one by engaging APs in the decision-making process.

Strengths and limitations

The concept of APs as an integral member of a clinical team is quite recent. Our study is exploratory and requires further study over time in addition to carrying out quantitative studies to test different models. One of the strengths of this study is precisely that it examines implementation through the eyes of those most affected (APs) who are rarely asked for their perception on the implementation process. This analysis could be complemented in the future by a view from professionals and managers who may have a different perspective on the barriers and facilitators to implementation. We also recognize that APs have different perceptions of their integration, and therefore the results may not be an exact representation for all APs. Adding non-participant observation in accompanying sessions for research purposes and conducting a cross-analysis with HPs’ and patients’ perceptions could help to better assess the limiting and facilitating factors of APs’ integration into clinical teams. In addition, the contexts in the four establishments differ and, accordingly, our results cannot be generalized. It is also important to recognize that the anticipated facilitators and barriers discussed in this study could differ if this intervention were to be fully implemented, as this constituted the first phase of implementation of the PAROLE-Onco program. Moreover, here we have presented APs’ perspective of the challenges and facilitators of their integration, but it is also important to assess what their roles are and what the effects of those role are on themselves, on the patients and on the clinical team. Those results are presented in another manuscript¹¹. Also, of the 29 APs that were included in the clinical teams at the 4 establishments, 20 participated in the study because some had changed positions or were unable to respond to our request. However, in our data collection process, both at T1 and T2, we felt that we had reached data saturation.

The PAROLE-Onco program aims to evaluate the integration of APs as full-fledged members of the clinical oncology teams in a real context. This article focuses on the results of individual interviews with APs involved in the implementation to assess their perception of the factors influencing implementation of this program in four healthcare establishments. Our results show that misunderstandings on the part of HPs about APs’ roles can explain the delayed change in culture in healthcare establishments and therefore increase the difficulty experienced in promoting accompanying services by APs. Creating opportunities for the clinical team members to exchange information with APs, build trust and recognize APs’ value in the team are identified as key facilitating factors. Furthermore, creating spaces by and for APs for sharing tips is essential to developing a community that strives to better their practice. Therefore, giving certain powers to APs, through co-construction and co-decision methods, is favourable to achieve a change in culture within healthcare establishments. This study highlights the importance of working proactively during the implementation with APs and HPs on organization, leadership, resources and status factors to allow patients dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

accompanying patient

CHU

Centre Hospitalier Universitaire

CHUM

Centre Hospitalier Universitaire de Montréal

CISSS

Centre Intégré de Santé et de Services Sociaux

CIUSSS

Centre Intégré Universitaire de Santé et de Services Sociaux

COVID-19

Coronavirus Disease 2019

CR-CHUM

Centre de recherche du Centre Hospitalier de l’Université de Montréal

PAROLE-Onco

Patient AdvisoR, an Organizational resource as a Lever for an Enhanced Oncology patient experience

HPs

healthcare professionals

E1-E4

Establishments

Centre hospitalier de l'Université de Montréal, E2:Centre Hospitalier Universitaire de Québec-Université Laval, E3:Centre intégré universitaire de santé et de services sociaux (CIUSSS) de l’Est-de-l’Île-de-Montréal, E4:CIUSSS de la Mauricie-et-du-Centre-du-Québec

first time of evaluation, beginning of APs intervention

second evaluation time, two years afterwards

QDA Software

qualitative data analysis software

CEO

Chief Executive Officer

CIFR

Consolidated Framework for Implementation Research.

Ethics approval and consent to participate

All methods were carried out in accordance with relevant guidelines and regulations. This study has received ethical approval from the Research Ethics Committee (17.260) of the Centre de recherche du Centre hospitalier de l’Université de Montréal (CRCHUM). An information and consent form was obtained from all subjects and/or their legal guardian(s).

Consent for publication

Not applicable.

Availability of data and materials

All data generated or analysed during this study are included in this published article [and its supplementary material file].

Competing interests

The authors declare that they have no competing interests.

Funding

The CIHR, the Ministère de la Santé et des Services Sociaux du Québec and the Quebec Breast Cancer Foundation provided funding for this study. The four health and social care organizations involved in the project provided in-kind resources to carry out the study. The CIHR is the original funding body so the study protocol was assessed by the CIHR peer review committee. The funding body played no role in the design of the study, in the collection, analysis and interpretation of data, nor in drafting the manuscript. M.-P.P. has a Senior Career Award funded by the Quebec Health Research Fund (FRQS), the Centre de Recherche du Centre Hospitalier de l’Université de Montréal and the Ministère de la Santé et des Services sociaux du Québec. AB is funded by the Canada Research Chairs program.

Authors’ contributions

MPP, MIN, CV, KB, LN, MAC, MaD, IF, IG, CR, ZR, DC, MFV, LB, MiD, DPG, MLT, AB, JFP, NF, AMD and MdG developed and designed the project. MPP, JP, MIN, CV, RM, KB, LN, MAC, MaD and PPC participated in data collection and analysis. All authors made substantial contributions to this study and participated in the drafting of this paper.

Acknowledgments:

We deeply thank Marcel Labelle for having reviewed and improved this manuscript, and Pamela Lipson for its translation.

Authors’ information

Two patient-researchers played an active role in designing and conducting the study, analyzing and interpreting the data, as well as preparing and drafting this manuscript.

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No competing interests reported.

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Integrating Accompanying Patients into Clinical Oncology Teams: Limiting and Facilitating Factors

Status:

Journal Publication

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Abstract

Contributions to the literature

Introduction

Theoretical frameworks

Methods

Settings

Data Collection

Data analysis

Results

General results

Governance

Pushing boundaries

Shared leadership

Ethical guidelines

Culture

Opportunities for discussion and dialogue

Promotion of the program

Recognition

Resources

Time

Office space

Financial compensation

Tools

Community of practice

Notes in patients’ files

Phone meetings

Discussion

Inner settings

Relational connection

Culture

Communications

Available resources

Individuals’ domain

Implementation process domain

Strengths and limitations

Conclusions

Abbreviations

Declarations

Availability of data and materials

Funding

Authors’ contributions

Acknowledgments:

Authors’ information

References

Additional Declarations

Supplementary Files

Status:

Journal Publication

Version 1