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The Central Role of Peer Facilitators in Empowering Breast Cancer Patients: A Qualitative Study | BMC Women’s Health

The Central Role of Peer Facilitators in Empowering Breast Cancer Patients: A Qualitative Study |  BMC Women's Health

This qualitative study made it possible to better understand the experience of cancer patients attending an association and responded to the objective of understanding the role of peers and associations in the appropriation of breast cancer. Our four main emerging categories highlight the lived experience of cancer patients who feel the need to express themselves to caregivers and peers without the supervision of healthcare professionals, using NPIs that allow them to live an experience of well-being. They express the need to understand what is happening. These different factors allow them to change and take ownership of their disease, even to become expert patients. This study discusses these factors and shows how they are intertwined.

Importance of the patient-centered approach as a vehicle for taking ownership of the disease: The peers involved in an association offer a person-centered approach that is essential to the helping relationship and to taking ownership of one’s disease. The patient-centered approach (PCA) is consistent with our four categories. It promotes change, resilience and responsiveness. We owe the concept of PCA to Mr. Stewart [16] who described this process according to six dimensions, which he reduced to four. He describes the first as the fundamental component of the approach. It is the exploration of lived experience that can lead to a holistic biopsychosocial understanding of the person, which is the second dimension.

A feeling of belonging to a community of destiny: participants in the forums [5] or associations seek a community of destiny, where people find a sense of belonging with others who have gone through the same experiences. People say it’s not a way to share details about the disease and the suffering that comes with it, which they feared to find there, but a way to discuss living with the disease and the how it affects their children. Patients have compared this community spirit to [a sports team] with his competitive spirit [winning together]. This is a concept developed by Maffesoli in [the time of tribes]; the association is like a tribe with its organization, its customs and its habits. behind the [community of destiny]», there are concepts evoking sharing, mutual aid, [making oneself useful] to another, and love. These concepts emerged from the lived experiences of the patients in our study. Patients find that understanding what is happening to them is calming and reassuring because their concerns need to be heard, which is consistent with the literature [17].

Participation in a patient association improves health literacy: Health Literacy (HL) highlights the importance for patients to understand their situation [17]. It is the degree to which one obtains, analyzes and understands the basic information [18]. The understanding of health is a component of the conditions of implementation and a path towards patient engagement, commitment to adhere to interventional devices and commitment to others in a helping relationship according to our results. Health literacy is not just a tool used to assess people’s understanding of a disease, but a “determinant of health”. [19] where patients can play a more active role. It is an important predictor of successful cancer self-management [20] and other chronic diseases [18]. Health literacy is also a determinant of therapeutic education; a low level of LH is an obstacle to therapeutic education. The two approaches, HL and therapeutic education, have the same objective of increasing the skills of users [18, 19] for empowerment. People with low levels of health trust social media and blogs more than health professionals [21].

Patients can have the freedom to express themselves in associations to find their own solutions [22] without the advice of health professionals, which constitutes support. For breast cancer, 72% of women use NPIs [23]but more than half do not tell their oncologist [24] for fear of being disapproved or unable to help [25]. Additionally, alternative medicine can lead to adverse effects, deleterious interactions with oncology treatments, and lost opportunities due to treatment delays. [25].

Can the association be reclassified as a health intervention? If so, on what criteria [26, 27]? Is it a vector of NPI? The patients of the Etincelle association consider the association as a health “intervention” that delivers supportive care. For health professionals, the association can provide access to INPs, but is not itself classified as such. The association can be seen as a social support device that allows the dispensation or exchange of emotional, instrumental or informational resources by non-professionals. [28]. It responds to the important human need for balance in social relationships, with five essential functions: emotional support, social integration, the possibility of feeling useful and necessary, the confirmation of one’s value and the acquisition of help. concrete and material. [28].

Our semi-pragmatic analysis allows modeling.

“When the characteristics and design (the conditions of implementation) of an association resonate with the components of the subjects’ lived experience in all its existential dimensions, this leads them to a process of adhesion, then of commitment, and finally of change, which gives a feeling of rediscovered freedom.

The process of change involves the transformation of the lived experience of the disease into a positive experience that goes hand in hand with a feeling of usefulness to others, of well-being and of openness towards a new life project, taking the form resilience.

From this point of view, the “association” itself takes the form of an INP if we consider this definition (Ninot): [An NPI is a care encompassing more helpers with the aim of well-being, contrary to medicinal care, it is a complementary intervention with the aim of doing without medication]. Marion Carayol [29] hypothesized that the effects induced by the conditions of implementation of an intervention could be at the origin of the change, rather than the intervention itself. This hypothesis is confirmed by this qualitative research work. Other processes of change are described in the literature, resulting in a change of place, role, greater autonomy [30]and give meaning to the experience [31]. Non-pharmacological interventions are described by our patients as “more supportive and inclusive care with a goal of well-being”, which is consistent with the literature. [32]. Supervised adapted physical activity programs have been shown to benefit the quality of life and prognosis of breast cancer patients as NPI [33]like “mindfulness” [34].

Membership in associations, sharing with peers and NPI were described by patients as a means of reclaiming their bodies. Listening to oneself and caregivers and sharing experiences with other patients are at the origin of a process of change that would allow patients to reclaim their body in all its physical, social and spiritual dimensions. [35]. The association offers time off to take care of one’s health. It is also a place of resilience. Most patients say they need to be useful to others by helping them rebuild their lives. The patient’s life plan is modified by the encounter with the disease [36], and this shift in focus is reflected in our research. Patients evoke their past either as a facilitating element or, on the contrary, as a source of difficulty. The person uses coping strategies [37]. External resources surrounding the subject after the trauma of coping with chronic diseases [38], and the return of self-confidence allow the subject to feel an improvement in the physical and psychological quality of life, which is a reflection of our results. Patients also express the need to be accompanied and surrounded, a result that can be found in the literature where the entourage contributes to the resilience of patients and to the isolation overwhelmed by the fact of living with the disease. [6, 39]. This is consistent with our results.

These experiences have brought out so-called “expert” patients with different levels of expertise depending on their commitment and reflexivity. By moving away from the classic patient-disease-doctor triad, the emergence of the patient-expert modifies the hierarchical relationships and the relationship to knowledge. It can also be a source of misunderstanding. According to patients, “The association transforms the patient experience by facilitating the engagement that leads to a patient-expert (empowerment). They experience a statutory transition thanks to the association which transforms the experience of patients and accompanies them in the process of empowerment. Glaser and Strauss [40] described the properties of status transitions as “regular, planned, and prescribed, but not necessarily always present. A transition can be desirable or undesirable” depending on the transition.

Within the framework of the association as an “intervention”, there are multiple transitions: from patient to patient-control, from isolated patient to patient-partner, from patient in doubt to patient involved, from patient-partner to patient-expert. . Not all patients go through these crossing points, but the association has a facilitation and mediation action to access them. The ultimate point of this dynamic process is empowerment, which refers to mastery and control of the situation. What we observe is the transformation of an isolated, individual transition, which gradually becomes collective, with the sharing of the same path-destiny for the benefit of the person within the patient association. This is an essential concept to apply in the search for change, because it is linked to the exploration of lived experience, which offers an opening towards the expectations and needs of the patient vis-à-vis his life with the disease (i.e. towards the person, approach recommended for example for people in a migration situation) [41]. Change is promoted by the person-centered approach in accordance with our results.

Strengths and limitations

A phenomenological approach allows an in-depth exploration of lived experience, complementary to epidemiological research. The validity of our results is based on the authenticity of the answers, and the triangulation of the analysis with the participation of two experts in the semio-pragmatic approach. This phenomenological approach is the only method that incorporates a principle of formal ordering, which limits researchers’ interpretation bias in a quantitative analysis. This allows for a better understanding of health behaviors and the mechanisms that lead to empowerment.

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