This qualitative study provided a better understanding of the experience of cancer patients attending an association and addressed the objective to understand the role of peers and associations in the appropriation of brest 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 health professionals, using NPIs that allow them to experience well-being. They express the need to understand what is happening. These different factors enable them to change and take ownership of their disease, and even become expert patients. This study discuss these factors and show how they are intertwined.

Importance of the Patient Centred Approach as a medium for ownership of the disease: Peers involved in an association offer a person-centred approach which is essential in the helping relationship and the appropriation of their illness. The patient centeredness approach (PCA) is consistent with our four categories. It promotes change, resilience, and responsiveness. We owe the concept of PCA to M Stewart [16] who described this process along 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 sense of belonging to a Community of Destiny: Participants in forums [5] or associations are look:ing for a community of destiny, where people find a sense of belonging with others who have had the same experiences. People say it is not a way to exchange details about the disease and the suffering that comes with it, which they feared they would find there, but an outlet to discuss living with the disease, and how it affects their children. The patients likened this community spirit to [a sports team] with its competitive spirit of [winning together]. This is a concept developed by Maffesoli in [the time of tribes]; the association is like a tribe with its organization, customs, and habitus. Behind the [community of destiny],” there are concepts connoting sharing, mutual aid, [making oneself useful] to the other, and love. These concepts have emerged from the lived experiences of the patients in our study. The patients find that understanding what is happening to them is soothing and reassuring because their concerns need to be heard, which is in agreement with the literature [17].

Participating in a patient association improves health literacy: Health literacy (HL) highlights the importance of patients understanding their situation [17]. It is the degree to which one obtains, analyzes, and understands basic information [18]. Health understanding is a component of the implementation conditions and a pathway to patient engagement, commitment to adherence to interventional devices, and commitment to others in a helping relationship according to our findings. Health literacy is not simply a tool used to assess people’s understanding of an illness, but a “determinant of health” [19] where patients can play a more active role. It is an important predictor of successful self-management in cancer [20] and other chronic diseases [18]. Health literacy is also a determinant of therapeutic education; a low level of HL is a barrier to therapeutic education. Both approaches, HL and therapeutic education, have the same objective of increasing users’ competencies [18, 19] for empowerment. People with low HL 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 advice from health professionals, which constitutes support. For breast cancer, 72% of women use NPI’s [23], but more than half do not mention them to their oncologist [24] for fear of disapproval or inability to help [25]. Moreover, alternative medicines can cause 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? Patients of the Etincelle association consider the association to be a health “intervention,” that delivers supportive care. For health professionals, the association may provide access to NPIs, but is not itself classified as one. The association can be seen as a social support device that allows the dispensation or exchange of emotional, instrumental, or information resources by non-professionals [28]. It responds to the important need for human equilibrium in social relations, with five essential functions: emotional support, social integration, the possibility of feeling useful and needed, confirmation of one’s value, and the acquisition of concrete and material help [28].

Our semi-pragmatic analysis allows a modelling.

“When the characteristics and design (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 them a feeling of newfound 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, well-being, and openness towards a new life project, taking the form of resilience.

From this perspective, the “association” itself takes the form of an NPI 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 giving meaning to the experience [31]. Non-pharmacological interventions are described by our patients as “more supportive, encompassing care with the goal of wellness,” which is consistent with the literature [32]. Supervised adapted physical activity programs have been shown to benefit quality of life and prognosis in breast cancer patients as NPIs [33], and so has “mindfulness” [34].

Joining associations, sharing with peers, and NPIs were described by patients as a way of reclaiming their bodies. Listening to oneself and the caregivers, and sharing experiences with other patients is at the origin of a process of change that would allow patients to reappropriate their body in all its physical, social, and spiritual dimensions [35]. The association provides a time out from nursing one’s health. It is also a place of resilience. Most of the patients say they need to make themselves useful to others by helping them rebuild their lives. The patients’ life project is modified by the encounter with the disease [36], and this change in priority is reflected in our research. The patients refer to their past as either a facilitating element or, on the contrary, a source of difficulties. The person uses coping strategies [37]. The external resources surrounding the subject after the trauma of coping with chronic illnesses [38], and the return of self-confidence enable the subject to feel an improvement in both 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 which is found in the literature where the entourage contributes to the resilience of patients and the isolation being burdened with living with the disease [6, 39]. This is in accordance with our results.

These experiences have led to the emergence of 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 changes hierarchical relationships and relationships to knowledge. It can also be a source of misunderstanding. According to the patients, “The association transforms the patient’s experience by facilitating engagement that leads to a patient-expert (empowerment). They live a statutory transition thanks to the association, which transforms the lived experience of the patients and guides them in the process of empowerment.” Glaser and Strauss [40] have 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.

In the context of association as an “intervention,” there are multiple transitions: from patient to patient-witness, from isolated patient to patient-partner, from patient-in-doubt to committed patient, and from patient-partner to patient-expert. Not all patients go through these points of passage, but the association has a facilitating, mediating action to access them. The ultimate point of this dynamic process is empowerment, which refers to the mastery and control of the situation. What we can see is the transformation of an isolated, individual transition that gradually becomes a collective, with the sharing of the same pathway-destiny to benefiting the person within the patient association. This is an essential concept to apply in the search for change, as it is linked to the exploration of lived experience, which provides an opening towards the expectations and needs of the patient towards his or her life with the disease (i.e., towards the person, an approach advocated, for example, for people in migration situations) [41]. Change is promoted through the person-centered approach in accordance with our outcomes.

Strengths and limitations

A phenomenological approach allows for a deep exploration of the lived experience, complementing epidemiological research. The validity of our results rests on the authenticity of the responses, 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 includes a formal ordering principle, which limits the interpretation bias of researchers in a quantitative analysis. This allows a better understanding of health behaviors and the mechanisms that lead to empowerment.

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