Introduction : With the growing expansion of participatory approaches in health, an increasing number of training initiatives have been developed to support these practices (Tourette-Turgis et al., 2019). However, these initiatives remain heterogeneous in their formats, objectives, and target audiences, reflecting a lack of consensus on what constitutes participatory approaches in practice (Paulo et al., 2023). Purpose of the research : This study aims to explore French-speaking training programs that foster collaboration among researchers, health professionals, and citizens. It focuses in particular on the underlying processes of acculturation, especially the ways in which citizens are introduced to research norms and the functioning of the healthcare system. Drawing on a review of grey literature and scientific studies on the topic, the study identified a wide range of training initiatives designed to promote the involvement of diverse groups in health research projects. Results : These programs most commonly seek to equip citizens and patients with the skills needed to participate in collaborative research. They vary according to the type of partnership (clinical, project, or educational) and the expected level of engagement, ranging from online modules to professional degree programs. Few initiatives, however, include specific training for health professionals. Conclusions : Training represents a key lever for supporting collaboration by fostering mutual understanding, adjustment, and recognition. However the imbalance in training opportunities raises questions about power relations, the professionalization of patients, and the epistemological limits of certain participatory approaches, highlighting critical challenges for the co-construction of knowledge in health.
BACKGROUND:Talking about the cognitive side effects of cancer treatment is a complex challenge for care providers, as it is often influenced by emotional issues and social stereotypes. OBJECTIVE:This study explored oncology care providers' communication practices concerning treatment-related cognitive side effects, as well as the emotional implications of these exchanges both for them and for patients. METHOD:We conducted 37 semi-structured interviews with oncologists and nurses specialized in oncology. Data were analyzed using a reflexive thematic approach. RESULTS:Communication about cognitive side effects was often downplayed or avoided. Care providers prioritized more visible side effects of treatment. Communication with patients varied according to patient profile, care providers being more likely to discuss cognitive side-effects with younger persons. A lack of time and training on how to manage (i) cognitive side effects and (ii) the emotional tension they felt trying to protect patients while maintaining their own professional identity, fostered a climate of concealment around this issue. CONCLUSION:This study highlights the need to design training programs for healthcare professionals that focus on developing emotional skills and better communication of the cognitive side effects of cancer treatment. Encouraging multi-disciplinary dialogue on these side effects could contribute to care providers' well-being.
Peer support interventions in oncology have shown potential benefits for patients, including reduced psychological distress, improved empowerment, and enhanced care experience. However, the integration of Accompanying Patients (APs), trained individuals with personal experience of cancer into clinical teams remains variable, and the mechanisms underlying their impact are not fully understood. In France, although peer support initiatives are emerging, they often lack structure, evaluation, and coordination. Building on the PAROLE-Onco model developed in Quebec, this study aims to adapt, implement, and evaluate a structured peer-support program within the French healthcare system. This study will use a mixed-methods, multiple-case design across ten oncology units with four organizational contexts. Quantitative data will be collected through validated questionnaires administered at baseline, 1 month, and 6 months for patients, or at inclusion, 1 month and 30 months for APs and healthcare professionals. Outcomes include quality of life (EORTC QLQ-C30), psychological well-being (HADS), empowerment (CASE-Cancer), care experience (PPE-15), patient-professional relationship (CADICEE), and professional perceptions of APs integration. Qualitative data will be gathered through semi-structured interviews, non-participant observations of meetings, and document analysis. This will explore the experiences of patients, APs, and professionals; the organizational adaptations and, the ethical and professional considerations associated with the program. Implementation fidelity, contextual adaptations, and stakeholders’ engagement will be systematically assessed. This study will provide an in-depth understanding of the integration processes and impacts of peer-support interventions in oncology care. By examining both patient-centered outcomes and organizational dynamics, it aims to identify key factors that facilitate sustainable integration of APs into clinical practice. Findings will inform strategies for scaling up and adapting peer-to-peer support programs across diverse healthcare settings, contributing to the strengthening of patient partnership and participatory approaches in cancer care. Trial is registered under Clinical Trails Registry – France (NCT06817655), registered on 10th February 2025.
Introduction: With the growing expansion of participatory approaches in health, an increasing numberof training initiatives have been developed to support these practices (Tourette-Turgis et al., 2019). However, these initiatives remain heterogeneous in their formats, objectives, and target audiences, reflecting a lack of consensus on what constitutes participatory approaches in practice (Paulo et al., 2023). Purpose of the research: This study aims to explore Frenchspeaking training programs that foster collaboration among researchers, health professionals, and citizens. It focuses in particular on the underlying processes of acculturation, especially the ways in which citizens are introduced to research norms and the functioning of the healthcare system. Drawing on a review of grey literature and scientific studies on the topic, the study identified a wide range of training initiatives designed to promote the involvement of diverse groups in health research projects. Results: These programs most commonly seek to equip citizens and patients with the skills needed to participate in collaborative research. They vary according to the type of partnership (clinical, project, or educational) and the expected level of engagement, ranging from online modules to professional degree programs. Few initiatives, however, include specific training for health professionals. Conclusions: Training represents a key lever for supporting collaboration by fostering mutual understanding, adjustment, and recognition. However the imbalance in training opportunities raises questions about power relations, the professionalization of patients, and the epistemological limits of certain participatory approaches, highlighting critical challenges for the co-construction of knowledge in health.
Objective To quantify the gap between pregnancy desire and pregnancy attempts among young women with and without a history of breast cancer (BC), and to identify factors associated with this gap. Design Cross-sectional cohort study. Setting The FEERIC study, conducted in France. Population Women aged 18–43 years without or with prior BC filling inclusion forms of a collaborative study. Methods Pregnancy desire was assessed by self-report (“Do you currently desire a pregnancy?”). Attempt was defined as engaging in unprotected intercourse with the intention to conceive. The pregnancy desire–attempt gap was defined as expressing a desire for pregnancy without actively trying to conceive. Logistic regression was used to evaluate associated demographic, clinical, and treatment-related factors. Main outcome measures Prevalence of the pregnancy desire–attempt gap and predictors of this gap among BC survivors. Results Of 4,351 participants (517 with BC and 3,834 controls), 735 (16.9%) reported a pregnancy desire with 54% attempting conception and 46% who did not. The desire–attempt gap was significantly more frequent in women with a history of BC (OR=1.62, 95%CI[1.15–2.30]). Among BC survivors, younger age (<30years), nulliparity, being single, and ongoing endocrine therapy were independently associated with the gap, whereas prior chemotherapy or trastuzumab were not. Conclusions Nearly half of women declaring desiring pregnancy do not initiate pregnancy attempts, with a larger gap among BC survivors. These findings highlight the need to explore both medical barriers and psychosocial determinants underlying this gap and underscore the importance of refining the language used in reproductive research. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement Yes ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The study protocol was approved by the Seintinelles scientific board (December 7, 2015) and the Sud Ouest Outre Mer II ethics committee (October 5, 2017, reference 2017:A02181-52). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data cannot be shared publicly because they contain potentially identifiable and sensitive patient information collected within the FEERIC cohort. Access to the data is subject to ethical and regulatory restrictions in accordance with French data protection regulations. Data are available from the FEERIC study coordinating team for researchers who meet the criteria for access to confidential data. Requests for data access can be directed to the FEERIC study investigators via hamyannesophie{at}gmail.com and will be reviewed by the study’s data access committee in accordance with institutional and ethical guidelines.
This article offers the French-speaking health psychology community an introduction to complexity theory. We show how this approach allows us to conceptualize health behaviors - physical activity, substance use, treatment adherence - as resulting from the emergence of nonlinear interactions between psychological, social, and environmental variables. After a brief historical overview, we precisely define three central properties: self-organization, multi-stability, and critical transitions, each illustrated by an empirical example. We then describe three methodologies directly inspired by this framework: (1) network analyses quantifying the local structure of interactions between variables (applied to binary data via the Ising model, they produce a matrix of interactions that can be used in statistical physics); (2) intensive dynamic models (ecological momentary assessment, stochastic differential equations) precisely describing intra-individual behavioral trajectories and their temporal feedback loops; (3) early warning signal analyses to detect the imminence of behavioral change. To articulate these approaches, we use the Attractor Landscape Model (ALM). This model operates on three levels: visual metaphor, methodological heuristic, and empirical quantification tool. Finally, we discuss the current limitations (restrictive methodological assumptions, the need for intensive time series, ethical constraints related to data) and propose concrete ways to manage these constraints. This article is structured around three main themes: first, a presentation of the theoretical foundations of complexity; second, an examination of the methods that derive from them; and finally, a discussion of their contributions and limitations.
Previous efforts to validate the Post-Traumatic Growth Inventory – Short Form (PTGI-SF) within the French context and among cancer survivors have yielded inconclusive results. This study aimed to select the optimal French version of the PTGI-SF between two candidate versions of the questionnaire (i.e., the American and the Italian). Sequential design was implemented, combining psychometric analyses—including confirmatory factor analysis, composite reliability, convergent validity, and discriminant validity—on a large sample of French cancer survivors (i.e., the VICAN5 survey), with an expert consensus process using the Technique for Research of Information by Animation of a Group of Experts (TRIAGE), which involved individual consultation followed by collective deliberation. The psychometric analysis, conducted on a sample of 3,823 cancer survivors, demonstrated that the two candidate versions of the PTGI-SF exhibit equivalent psychometric properties. Following a comprehensive review of the questionnaires, experts unanimously concluded that the American version was the most suitable for the French context (SB-RMSEA = 0.074; SB-CF = 0.953; SB-TLI = 0.915; SRMR = 0.035; RRC from 0.594 to 0.695). This preference was based on its superior questionnaire structure, enhanced item readability in relation to the assessed dimensions, and better alignment with the language and experiences of cancer survivors as observed in clinical practice and real-world experience. The selected PTGI-SF version reflects a careful balance between statistical rigor and practical applicability in clinical settings and holds promise for improving the identification of post-traumatic growth in clinical settings.
Public health leadership faces widening inequities, uneven life expectancy trends, and growing information disorder. Experience from COVID-19 showed that shortcomings often stem less from lack of evidence than from weaknesses in how evidence inform decisions. This commentary reframes the challenge as one of evidence governance: ensuring that knowledge is interpreted, debated, and translated into fair, accountable action. We introduce GUARD, a practice-oriented framework for governing evidence: Govern in public, User power-sharing, Architect and audit integrity, Resist manipulation of meaning, and Demonstrate legitimacy. Rather than proposing new principles, GUARD operationalizes existing ones into implementable governance routines, offering public health leaders a practical pathway to strengthen legitimacy, reduce inequities, and sustain trustworthiness under uncertainty.
In 2023, training in individual research interviewing was developed and implemented by social psychology researchers to enable patient researchers from the IMPAQT research group to participate in the data collection for the Ancolies project. The training was aimed at intra-individual changes (increased knowledge, sense of efficacy, and development of skills) based on interpersonal processes (sharing of experience, social support) which were part of a positive group dynamic pre-existing the training. The aim of this study was to evaluate the training. To meet the research objectives, several tools were developed : (1) an observation grid; (2) a voice recording of the second training module; and (3) a short questionnaire completed at the end of the training day. The three patient researchers who participated in the training reported that they felt capable of conducting interviews during the Ancolies project. Several learning dynamics related to the participants’ experience were highlighted : Sharing research experiences provided informational support that facilitated knowledge acquisition, while sharing illness experiences enhanced the credibility of role-playing exercises and strengthened the patient researchers’ skills in conducting interviews. A single day of training, however, proved insufficient for all the participants. The training appears to promote the commitment and skill development of patient researchers, despite being limited to a single-day format.
INTRODUCTION:Quality of life (QoL) of cancer survivors may be affected in the long term by the severity of the cancer and its treatment. We aimed to measure QoL and to identify factors associated with a lower QoL in breast cancer survivors (BCS) more than five years after cancer diagnosis. METHODS:We conducted a cross-sectional study (October 2020-December 2021) among BCS participating in the French population-based E3N-Generations prospective cohort. QoL was measured using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) version 3. Self-administered questionnaires were used to collect data on sociodemographic and health-related factors, lifestyle habits, and post-traumatic growth. RESULTS:The study included 1,540 BCS aged 70-95 years. The mean EORTC QLQ-C30 scores were 82.6±17.42, 85.89±22.76, 75.81±21.41, 81.26±19.42, 89.24±21.12 and 67.75±17.42 for physical/role/emotional/cognitive/social functioning and general health status (GHS)/QoL, respectively. Factors such as fatigue, depression, pain, anxiety, comorbidity, financial difficulties and alcohol consumption, older age, dyspnoea, high BMI, low regular physical activity and low education were associated with problematic functioning (below clinically significant thresholds) and GHS/QoL scores. CONCLUSIONS:Behavioural changes could improve modifiable factors (high BMI, low regular physical activity) and have a positive impact on functioning and QoL. Better management of anxiety, depression, fatigue, pain, sleep and digestive disorders, cardiovascular, neurological diseases and diabetes could help improve QoL in BCS. IMPLICATIONS FOR CANCER SURVIVORS:Long-term surveillance of BCS and early management of cancer sequelae through targeted counselling and interventions can prevent deterioration in survivors' functioning and QoL over time.
Women accounted for 57.8% of new HIV infections in Mali in 2022. Although HIV disclosure is a recognized facilitator of prevention and engagement with the HIV care continuum, Malian women living with HIV (WLHIV) face several challenges to disclosing their serostatus to loved ones; this is because of the fear of stigma, violence, and social rejection. This study evaluated the effectiveness of a community-based interventional trial in reducing the burden of non-disclosure in Malian WLHIV. We conducted a longitudinal, randomized, interventional trial from February 2019 to December 2020 as part of the ANRS 12373 Gundo-So mixed-methods study in six community-based clinics in Bamako, Mali. The intervention aimed to reduce the burden of non-disclosure among WLHIV by (i) empowering them to decide whether or not to disclose their serological status, and (ii) helping them to identify, develop and implement strategies to manage the consequences of their decision. The intervention comprised nine weekly sessions with psychosocial counsellors where WLHIV discussed their concerns and experiences regarding disclosure. Participants were randomized into two groups: an ‘immediate’ and ‘deferred’ intervention group (i.e., the latter was a control group which started the intervention later). Questionnaires at enrolment and follow-up collected data on sociodemographics, antiretroviral treatment (ART), social support, and other characteristics. A Likert scale, with stones representing the level of perceived psychological burden, was used to measure the reduction in the burden of non-disclosure; longitudinal growth curve models were applied to assess the intervention’s impact nine months post intervention. Among the 240 WLHIV enrolled in the trial, at baseline, 54.6% and 95% declared that no family member or friend, respectively, knew their serological status. At baseline, 36% reported a heavy or very heavy burden of non-disclosure; this rate dropped to 9% nine months post intervention. The estimation of the growth curve model showed the absence of difference between the immediate and deferred intervention groups. Overall, the intervention contributed to the decrease of the burden of nondisclosure starting from the post-intervention and persisting over time until M9. In addition, the model showed that older age, not feeling alone, receiving material support, and easy adherence to ART were associated with reduced burden. The ANRS 12373 Gundo-So interventional trial was effective in reducing the burden of non-disclosure among Malian WLHIV. In a context where most HIV interventions focus on increasing disclosure, reducing the associated burden constitutes an innovative approach to HIV care.
Introduction: Access to health care for trans and gender-diverse individuals is marked by persistent inequalities, often rooted in stigma and discrimination. The limited involvement of health care and social service professionals further restricts these individuals' access to adequate care. This article offers a novel analytical perspective by examining the experiences, motivations, and perceived enablers highlighted by professionals in the medical and social fields who are actively engaged in supporting the health care of trans people. Methods: Thirteen professionals took part in the study through individual interviews and a focusgroup. Thematic analysis identified several key barriers and enablers in their practices. Results: Enablers included a strong commitment to social justice, the establishment of egalitarian care relationships, and prior familiarity with the trans community. Major barriers included alack of training and officialguidelines, fearofoverstep-ping one's professional boundaries, and structural constraints tied to a binary male/female health care model. Participants suggested several avenues for improvement, including the development of guidelines by the French National Health Authority, the generation of robust scientific data, and the integration of specific content on trans health into both initial and continuing education. These measures, they emphasized, must be developed collaboration with the communities concerned. Ultimately, participants stressed that reducing health care access inequalities depends on increasing the number of professionals who are both committed and adequately trained to support trans individuals. Discussion: Transforming the health care system into a more inclusive space for trans people requires the commitment of professionals, institutional reforms, and the active participation of those directly concerned, in order to improve access to care and enhance the quality and equity of health care for all.
This systematic literature review aimed at gathering available datareporting Quality of Life (QoL) in patients with Multiple Endocrine Neoplasia type 1 (MEN1) in order to identify the determinants of QoL for people living with this condition. To this end, a systematic review following PRISMA guidelines was conducted. We included eleven studies, methodologically valid, published between 2003 and 2022. Ten of the eleven publications reported quantitative analyses. Only one study presented a qualitative study. The analysis of the available data showed that patients' QoL is highly variable: while some patients maintained a near-normal lifestyle, many experienced a decline in their QoL. This decline affected general health, social functioning and psychological well-being. Physical symptoms, intensive medical follow-up and fear of disease recurrence strongly influenced their perception. QoL appeared to be influenced by several determinants, such as age at MEN1 diagnosis, number of previous surgical procedures and their consequences for the daily life, and the at least annual recurrence of medical appointments. Anxiety and fear of recurrence were very common, affecting more than half of all patients in the available studies. The family's role as moral support seemed to mitigate the negative effects of MEN1 on QoL. Job retention and the financial cost of the disease were also important determinants. This systematic review enabled us to highlight various biopsychosocial determinants of patients' quality of life. Social determinants, and in particular the family support, which was only marginally investigated in the selected studies, would be important to investigate further.
Gay men in Arab Muslim countries face a complex reality due to prevailing socio-cultural and legal conditions, which can influence how they experience and interpret their everyday life. This study aimed to explore the psychosocial implications of discrimination and the coping strategies of gay men in Tunisia. A qualitative approach was adopted, using semi-structured interviews with gay men and mental health professionals. MAXQDA was used to perform reflexive thematic analysis. Reflexivity was maintained throughout the research diary and peer debriefing amongst the diverse research team to enhance objectivity. Four key themes were constructed: (1) The pervasive burden of stigma and discrimination, highlighting both direct and anticipated experiences of exclusion; (2) Psychological toll and social fragmentation, encompassing mental health distress, isolation, and strained social participation; (3) Coping strategies, including concealment, migration, community activism, and engagement in online networks; and (4) Social support and the limits of access, contrasting informal peer solidarity with the lack of institutional protections. The study highlights the need for legal reforms, enhanced mental health support, and inclusive community spaces. Addressing these challenges requires a collective effort to reduce stigma and promote acceptance.
The purpose of this study is to estimate the prevalence and factors associated with fear of cancer recurrence (FCR) in post-menopausal women 5 years after the diagnosis of breast cancer (BC). Using data from the VICAN-5 survey, we included women with non-metastatic BC, aged 55 years or more at diagnosis, who had not experienced disease progression in the 5 years post-diagnosis. Multinomial logistic regression was used to identify factors associated with FCR, characterized using a three-level indicator: no, mild, and moderate/severe FCR derived from a single item. Among the 382 women included, the mean age was 66 years at diagnosis. Five years later, 38
OBJECTIVES:Accompanying Patients (APs) are individuals with lived experience of cancer who provide emotional, informational, and navigational support to patients. However, peer-to-peer support interventions in oncology remain inconsistently developed and rarely integrated into clinical practice in France. This study aims (1) to co-design a context-sensitive peer-to-peer support intervention for oncology units, (2) to identify institutional enablers and barriers to implementation, and (3) to develop tailored implementation pathways using implementation science frameworks. METHODS:A multi-site participatory study was conducted in nine oncology units across four French healthcare institutions. Eight patient partners were involved as co-researchers contributing to study design, facilitation of co-design workshops, and iterative model refinement. A structured co-design methodology guided four interactive workshops per unit. Data were collected through workshop materials, observation notes, and co-researcher reflections, and analyzed thematically using the Consolidated Framework for Implementation Research (CFIR) framework, and the resulting intervention was described using the Template for Intervention Description and Replication (TIDieR). RESULTS:Twenty workshops involving 60 stakeholders (APs, healthcare professionals and managers) resulted in the co-construction of a peer-to-peer support model aligned with local care structures. Three key outputs emerged: (1) a shared definition of the APs role, including expected psychosocial competencies and training needs; (2) identification of institutional enablers and barriers to implementation, such as leadership support, physical environment constraints, and role legitimacy; and (3) tailored implementation pathways, including onboarding, supervision, and integration into care processes. The resulting PaRole OncO France (PROOF) model was designed to be adaptable while preserving core components. CONCLUSION:This study demonstrates the feasibility and value of co-designing a peer-to-peer support intervention in oncology, grounded in lived experience and local context. PRACTICE IMPLICATIONS:The PROOF model offers a replicable framework for integrating APs into cancer care teams. Findings provide actionable guidance for institutions seeking to implement sustainable, patient-partnered peer-to-peer support programs.
We aimed to understand how COVID-19 impacted LGBTQIA+ adolescents’ and young people’s well-being and to explore self-care strategies developed by them to address such effects. A qualitative investigation was conducted with adolescents and young people including 39 men who have sex with men and transgender women aged 15–22 years in Brazil. Data collection comprised digital-based diaries and semi-structured interviews and occurred during physical distancing measures. We adopted an iterative thematic analysis from an intersectional lens to examine how participants’ multiple social identities—such as gender, sexuality, race, and class—influenced their self-care practices. The process of reflecting on and adapting to COVID-19-related restrictions prompted participants to recognize experiences that impacted their well-being throughout their lives, such as stigma, discrimination, and violence. Social class emerged as the primary factor in social differentiation, rather than race, leading to varied effects of the pandemic on participants’ lives. In their quest for a sense of wholeness, participants became more critical of their relationships, often choosing to end toxic and abusive connections while seeking new sources of social support as a key strategy for protecting their well-being. Transgender participants noted that certain aesthetics within the transgender community could be oppressive rather than emancipatory. Engaging with new social media circles and participating in volunteer work were important forms of community engagement, particularly among Black participants. Future research on the long-term effects of COVID-19 on the well-being of adolescents should prioritize articulating structural drivers of inequality in qualitative health research.