The black box of the relationship between breast cancer patients and accompanying patients: the accompanied patients' point of view.

BACKGROUND: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. METHODS: A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients' perceptions of APs' contributions and suggested improvements for accessing AP support. RESULTS: Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients' experiences and highlighted areas for enhancing this service. CONCLUSION: This study highlights, during the care trajectory of people affected by breast cancer, APs' contribution to patients' emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.

In 2019, we initiated the PAROLE-Onco program in Quebec, Canada, to support cancer patients by integrating Accompanying Patients (APs) into the medical team. These individuals, who have personally experienced cancer, join as full team members, sharing their insights with both patients and medical staff. Our study delved into the perceptions of breast cancer patients at two university hospitals regarding APs' involvement in their care trajectory. Through interviews with 14 women of diverse backgrounds and cancer experiences, we found that APs were instrumental in enhancing communication with doctors, facilitating the expression of challenging emotions, and aiding in treatment decisions. Patients valued the inclusion of APs in their care team and expressed gratitude for their support. Nonetheless, some encountered difficulties in reaching out to APs due to a lack of awareness or challenges involved in connecting. Overall, our research underscores the positive impact of involving APs in the care of breast cancer patients, and of enhancing emotional well-being and communication throughout the treatment journey.

Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors.

OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into 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 who are 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 later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program 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 optimal 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.

An exploratory cross-sectional study of the effects of ongoing relationships with accompanying patients on cancer care experience, self-efficacy, and psychological distress.

BACKGROUND: Centre hospitalier de l'Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. METHODS: An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. RESULTS: Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients' ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). CONCLUSIONS: This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.

Accompanying patients in clinical oncology teams: Reported activities and perceived effects.

INTRODUCTION: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. METHODS: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. RESULTS: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. CONCLUSION: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. PATIENT OR PUBLIC CONTRIBUTION: Two patient-researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.

Assessing and promoting partnership between patients and health-care professionals: Co-construction of the CADICEE tool for patients and their relatives.

CONTEXT: Partnership between patients and health-care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. OBJECTIVE: To co-construct a tool for measuring the degree of partnership between patients and HCPs. DESIGN: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co-construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. RESULTS: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. CONCLUSIONS: The CADICEE tool is developed in co-construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health-care settings. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in determining the importance of constructing this questionnaire. They co-constructed it, pre-tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.

How service users and carers understand, perceive, rephrase, and communicate about "depressive episode" and "schizophrenia" diagnoses: an international participatory research.

BACKGROUND: For ICD-11, the WHO emphasized the clinical utility of communication and the need to involve service users and carers in the revision process. AIMS: The objective was to assess whether medical vocabulary was accessible, which kinds of feelings it activated, whether and how users and carers would like to rephrase terms, and whether they used diagnosis to talk about mental health experiences. METHOD: An innovative protocol focused on two diagnoses (depressive episode and schizophrenia) was implemented in 15 different countries. The same issues were discussed with users and carers: understanding, feelings, rephrasing, and communication. RESULTS: Most participants reported understanding the diagnoses, but associated them with negative feelings. While the negativity of "depressive episode" mostly came from the concept itself, that of "schizophrenia" was largely based on its social impact and stigmatization associated with "mental illness". When rephrasing "depressive episode", a majority kept the root "depress*", and suppressed the temporal dimension or renamed it. Almost no one suggested a reformulation based on "schizophrenia". Finally, when communicating, no one used the phrase "depressive episode". Some participants used words based on "depress", but no one mentioned "episode". Very few used "schizophrenia". CONCLUSION: Data revealed a gap between concepts and emotional and cognitive experiences. Both professional and experiential language and knowledge have to be considered as complementary. Consequently, the ICD should be co-constructed by professionals, service users, and carers. It should take the emotional component of language, and the diversity of linguistic and cultural contexts, into account.

Effects of concentrated long-chain omega-3 polyunsaturated fatty acid supplementation before radical prostatectomy on prostate cancer proliferation, inflammation, and quality of life: study protocol for a phase IIb, randomized, double-blind, placebo-controlled trial.

BACKGROUND: Prostate cancer is the most commonly diagnosed cancer in north-American men. Few dietary or lifestyle interventions have been tested to prevent prostate cancer progression. Omega-3 fatty acid supplementation represents a promising intervention for prostate cancer patients. The aim of the study is to evaluate the effects of long-chain omega-3 polyunsaturated fatty acids (LCn3), more precisely eicosapentaenoic acid monoacylglyceride (MAG-EPA) supplementation, on prostate cancer proliferation, inflammation mediators and quality of life among men who will undergo radical prostatectomy. METHODS/DESIGN: We propose a phase IIb, randomized, double-blind placebo-controlled trial of MAG-EPA supplementation for 130 men who will undergo radical prostatectomy as treatment for a prostate cancer of Gleason score ≥ 7 in an academic cancer center in Quebec City. Participants will be randomized to 6 capsules of 625 mg of fish oil (MAG-EPA) per capsule containing 500 mg of EPA daily or to identically looking capsules of high oleic acid sunflower oil (HOSO) as placebo. The intervention begins 4 to 10 weeks prior to radical prostatectomy (baseline) and continues for one year after surgery. The primary endpoint is the proliferative index (Ki-67) measured in prostate cancer cells at radical prostatectomy. A secondary endpoint includes prostate tissue levels of inflammatory mediators (cytokines and proteins) at time of radical prostatectomy. Changes in blood levels of inflammatory mediators, relative to baseline levels, at time of radical prostatectomy and 12 months after radical prostatectomy will also be evaluated. Secondary endpoints also include important aspects of psychosocial functioning and quality of life such as depression, anxiety, sleep disturbances, fatigue, cognitive complaints and prostate cancer-specific quality of life domains. The changes in these outcomes, relative to baseline levels, will be evaluated at 3, 6, 9 and 12 months after radical prostatectomy. DISCUSSION: The results from this trial will provide crucial information to clarify the role of omega-3 supplementation on prostate cancer proliferation, inflammation and quality of life. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02333435. Registered on December 17, 2014. Last updated September 6, 2016.

A systematic mixed studies review on Organizational Participatory Research: towards operational guidance.

BACKGROUND: Organizational Participatory Research (OPR) seeks organizational learning and/or practice improvement. Previous systematic literature reviews described some OPR processes and outcomes, but the link between these processes and outcomes is unknown. We sought to identify and sequence the key processes of OPR taking place with and within healthcare organizations and the main outcomes to which they contribute, and to define ideal-types of OPR. METHODS: This article reports a participatory systematic mixed studies review with qualitative synthesis A specialized health librarian searched MEDLINE, CINAHL, Embase Classic + Embase, PsycINFO, the Cochrane Library, Social Work Abstracts and Business Source Complete, together with grey literature data bases were searched from inception to November 29, 2012. This search was updated using forward citation tracking up to June 2014. Reporting quality was appraised and unclear articles were excluded. Included studies clearly reported OPR where the main research related decisions were co-constructed among the academic and healthcare organization partners. Included studies were distilled into summaries of their OPR processes and outcomes, which were subsequently analysed using deductive and inductive thematic analysis. All summaries were analysed; that is, data analysis continued beyond saturation. RESULTS: Eighty-three studies were included from the 8873 records retrieved. Eight key OPR processes were identified. Four follow the phases of research: 1) form a work group and hold meetings, 2) collectively determine research objectives, 3) collectively analyse data, and 4) collectively interpret results and decide how to use them. Four are present throughout OPR: 1) communication, 2) relationships; 3) commitment; 4) collective reflection. These processes contribute to extra benefits at the individual and organizational levels. Four ideal-types of OPR were defined. Basic OPR consists of OPR processes leading to achieving the study objectives. This ideal-type and may be combined with any of the following three ideal-types: OPR resulting in random additional benefits for the individuals or organization involved, OPR spreading to other sectors of the organization and beyond, or OPR leading to subsequent initiatives. These results are illustrated with a novel conceptual model. CONCLUSION: The model provides operational guidance to help OPR stakeholders collaboratively address organizational issues and achieve desired outcomes and more. REVIEW REGISTRATION: As per PROSPERO inclusion criteria, this review is not registered.

Use of a mobile device in mental health rehabilitation: A clinical and comprehensive analysis of 11 cases.

This study aimed to test the feasibility of using a mobile device (Apple technology: iPodTouch®, iPhone® or iPad®) among people with severe mental illness (SMI) in a rehabilitation and recovery process and to document the parameters to be taken into account and the issues involved in implementing this technology in living environments and mental health care settings. A qualitative multiple case study design and multiple data sources were used to understand each case in depth. A clinical and comprehensive analysis of 11 cases was conducted with exploratory and descriptive aims (and the beginnings of explanation building). The multiple-case analysis brought out four typical profiles to illustrate the extent of integration of a personal digital assistant (PDA) as a tool to support mental health rehabilitation and recovery. Each profile highlights four categories of variables identified as determining factors in this process: (1) state of health and related difficulties (cognitive or functional); (2) relationship between comfort level with technology, motivation and personal effort deployed; (3) relationship between support required and support received; and (4) the living environment and follow-up context. This study allowed us to consider the contexts and conditions to be put in place for the successful integration of mobile technology in a mental health rehabilitation and recovery process.

Psychometric characteristics of the "General Oral Health Assessment Index (GOHAI) ¼ in a French representative sample of patients with schizophrenia.

BACKGROUND: The "General Oral Health Assessment Index" (GOHAI) was widely used in clinical or epidemiological studies worldwide, as it was available for use in different languages. Therefore, the aim of this study was to evaluate the psychometric characteristics of the GOHAI in a representative sample of patients with schizophrenia. METHODS: A total of 90 schizophrenic patients (in-patients and out-patients) were recruited from the participants of the "buccodor study" (NCT02167724) between March and September 2015. They were selected using a random stratified sampling method according to their age, sex, or residential area (urban/rural area). GOHAI validity (construct, predictive, concurrent and known group validity) and internal consistency (reliability) were tested. Test-retest reliability was evaluated in 32 subjects. RESULTS: The mean age was 47.34 (SD = 12.17). Internal consistency indicated excellent agreement, with a Cronbach's α value of 0.82 and average inter-item correlation of 0.65. Intraclass correlation coefficients for test-retest reliability with 95% confidence intervals were not significantly different (p > 0.05). Construct validity was supported by three factor that accounted for 60.94% of the variance observed. Predictive validity was corroborated as statistically significant differences were observed between a high GOHAI score, which was associated with self-perceived satisfaction with oral health, lower age and high frequency of toothbrushing. Concurrent validity was corroborated as statistically significant relationships were observed between the GOHAI scores and most objective measures of dental status. For known group validity, they was no significant difference of the mean GOHAI score between out or in-patients (p > 0.05). CONCLUSION: Acceptable psychometric characteristics of the GOHAI could help caregivers to develop ways to improve the Oral Health related Quality Of Life of schizophrenic patients. TRIAL REGISTRATION: Clinical Trials Gov NCT02167724 . Date registered 17 June, 2014.

[The Global Model of Public Mental Health and Recovery Mentors]. / Le Modèle global de santé mentale publique et les mentors de rétablissement.

Objectives The aim of this paper is to revisit the Global Model of Public Mental Health (GMPMH) in light of the 4th Civic Forum. Recovery mentors of the University of Recovery chaired this public event, which was held in East-end Montreal, Canada, in 2016. The University of Recovery is a concept of co-learning among its members.Methods Being able to refer to international conventions and human rights standards is a key component of a genuine global approach that is supportive of individuals and communities in their quest for recovery and full citizenship. The GMPMH was inspired by the ecological approach in public health and health promotion programs, while adding to that approach the recovery mentors, as agents of mental health policies and legislation transformation. The GMPMH integrates recovery- and citizenship-oriented practices through the Ottawa Charter for Health Promotion of the World Health Organization. Indeed, here the GMPMH is said to be global in that the supranational and individual levels reinforce each other, taking turns with a) a set of legal rules and international conventions on human rights, including those of disabled persons, and b) the active involvement and agency of recovery mentors who can evoke these rules and conventions as part of a plea for the recognition of their personal and collective capacity for change; they acted as tracers of recovery trajectories during the Civic Forum. The GMPMH was first published in 2009, and revisited in 2013. While this latter revision was based on the 3rd Civic Forum, in this paper we use the same approach to revisit the GMPMH as underpinned by the findings and recommendations of the 4th Civic Forum, which discussed questions related to work and employment.Results Updating the GMPMH in light of the Civic Forum underlines the need for a more inclusive type of governance regarding policy and systems transformation. Local communities and persons in recovery can reach each other to promote change and capacity building, for instance through quality assessment, and evaluation of human rights' level of respect in healthcare facilities and more broadly. People with mental health challenges ought to be "included in the community" - as this is a right, not a reward (UN Convention on the Rights of Persons with Disabilities, art. 19). This is achievable if the community is informed and welcoming, for instance in getting involved with a Civic Forum and its organizing committee. The degree to which a transformational agenda is participatory is revealed as a predictor of the degree to which the broader community can be reflexive about its own inclusiveness for a genuinely global approach of public mental health, and with a cascading emulation effect.Conclusion Transition from social marginalization to full citizenship represents a daunting challenge in public mental healthcare. Creating access to the valued roles which individuals will be able to occupy in community and workplace settings requires capacity building and inter-sectorial synchronicity, as suggested by recovery mentors who can act as tracers to reveal obstacles and gateways in the recovery journey. Public intervention and debate are required to promote and monitor the bond of citizenship that connects people to their communities, and the quality of this bond needs to be included in the scope of public mental health for continuity and equity of access.

[Evaluation of a citizenship-oriented intervention: The Citizens' Project of the University of Recovery]. / Évaluation d'une intervention de promotion de la citoyenneté : le Projet citoyen de l'Université du rétablissement.

Objectives The Global Model of Public Mental Health is "global" not only in the sense of having an international perspective, but in regarding service users as actors at all levels of public mental health exerting collective and organized influence on the social determinants of health, in addition to being recipients of care. Having access to appropriate health and mental health care when needed is a fundamental human right. Having a say over the manner in which care is provided, including partnership in decision making in care planning and ongoing care, has gained increasing support among recipients and providers of care. Over the past few decades in the Canadian province of Quebec, patient participation and partnership in decision-making has been promoted through successive Mental Health Action Plans (MHAP) and other policies. In these documents, participation and partnership are associated with the exercise of citizenship and the promotion of service users' rights, including the rights to participate in one's own care. In this article, using the case example of a citizenship-oriented intervention, namely the Projet citoyen, we discuss the results to a new measure of citizenship, which was developed from a service users' perspective.Methods Employing a mixed methods approach, two types of data were collected from users of mental health care. Quantitative data were generated from administration of a 23-item measure of citizenship with service users in the province of Quebec (N=802), and qualitative data were collected from four focus groups with another sample of 18 service users. They were presented with results from the administration of the measure, and asked to comment on them in regard to their own experience of citizenship.Results Among the five dimensions of the measure of citizenship, participants scored lowest on the 'involvement in the community' dimension, and higher on the other dimensions of 'basic needs,' 'respect by others,' 'self-determination,' and 'access to services.' In focus groups, participants said that there is still prejudice in society and discrimination towards people with mental illnesses that limit their right to participate in public debate and mental health programming. Public health interventions at this level may help to change attitudes and social representations, as they are inclusive of persons with lived experience of mental illness. Public discussion of citizenship issues in relation to mental health also represent an opportunity for participants to confront existing problems, as a first step toward collective action.Conclusion People's lived experience of regaining a sense of citizenship and of belonging to their local neighborhoods and communities, including the scientific micro-community, can help to foster an evolution of public health from disease management to health promotion and community inclusion. More research is needed to compare the sense of citizenship to the rest of the population and to see if specific interventions can have an enduring impact (e.g.: pre/post design).

[On the University of Recovery]. / De l'Université du rétablissement.

Objectives Located at the heart of a mental health university institute in Montreal, Canada, the University of Recovery (UR) is a peer-run agency of service users who came together as a private non-profit organization to promote their experiential knowledge in science and public health, and to transform the academic milieu as an inclusive work environment conducive to recovery and full citizenship. UR students can thus have access to scientific conferences and classes on various topics and invite scientists or other professionals to further discuss new discoveries and techniques, and possible ways of improving healthcare from a patients' and service users' perspective. Our conversation with a scientist specialized in obsessive-compulsive disorders triggered this collective reflection on neuroimaging in terms of psychiatric diagnoses, prognoses, recovery opportunities and meta-cognition.Method At the core of the UR as a therapeutic education program is the Projet Citoyen, an adaptation and a transposition in Montreal of the Yale Citizens Project, which has been developed in New Haven, USA, over the past fifteen years. The Projet Citoyen is comprised of four main components: bi-weekly group discussions, individualized peer support, involvement and practicum in the community, and participation in public events and debates. UR students therefore evolve in the academic and scientific milieu, here regarded as a translational community and human laboratory towards social inclusion and full citizenship. UR students can be involved as auxiliaries of medical training to always promote and illustrate recovery opportunities when psychiatric 'dysfunctions' or 'disorders' are the topics of a medical class. In April 2016, UR students invited Dr Marc Lavoie to discuss is work on obsessive-compulsive disorders (OCD). The content of this group discussion is herein reported.Results UR students learned, among other things, that neuroimaging can be used to identify patterns of brain reactions to various stimuli and situations, reactions that can be different from one psychiatric condition to another and to the rest of the 'normal' population. For example, bright red, green, or blue shades of color can show an over-activation of the thalamus for persons with OCD. This difference can be indicative of a so-called cognitive impairment, with some people reacting more 'emotionally' to an image than other persons for whom the reaction would imply parts of the brain which are normally rather associated to 'rational' thinking (e.g.: the cerebral cortex). Such a difference, when it appears through a neuroimaging technique like EEG or MRI, does not lead to the enunciation of a particular diagnosis for an individual, but can give some complementary indications to be used in conjunction with other observations and can inform the choice for a therapeutic approach. Cognitive Behavioural Therapy, for instance, has been statistically shown to be associated with anatomic changes in the human brain. Through some quite spectacular images of parts and subparts of the brain in action, UR students were able to admire all this beautiful neurodiversity. Then we discussed the concept of neuroplasticity: we now know that many aspects of the brain remain changeable or "plastic" even into adulthood, which contrasts with the previous common consensus that the human brain develops during childhood, then remains at once unchangeable afterward and "static."Conclusion Diverse neurological conditions appear as a result of normal variations in the human genome and in affect, the concepts of neurodiversity and of neuroplasticity go much beyond the prevailing prior conceptual conditioning of neurological differences as being inherently pathological and an irreversible "error of Mother Nature." There may be behaviors that cannot be controlled through rational thought, but rather emerge based on prior conditioning from the environment and other external and/or internal stimuli, and a psychotherapy could then consist of recognizing this conditioning and learning how to think and react differently to a triggering stimulus. The University of Recovery is thus first and foremost a principle of mutuality among its members - the students in recovery - who are allied through self-help as a basis for metacognitive therapeutic education.

Akt confers cisplatin chemoresistance in human gynecological carcinoma cells by modulating PPM1D stability.

Ovarian cancer (OVCA) and cervical cancer (CECA) are lethal gynecological malignancies. Cisplatin (CDDP) and platinum derivatives are first line chemotherapeutics and their resistance impedes successful treatment. Understanding the molecular dysregulation underlying chemoresistance is important in developing rational therapeutic strategies. We have established that Protein Phosphatase Magnesium-dependent 1 D (PPM1D) confers CDDP resistance in gynecological cancer cells by deactivating p53. However, whether CDDP regulates intra-cellular PPM1D localization and whether this regulation is different between chemosensitive and chemoresistant cancer cells is unknown. Moreover, whether Akt regulates PPM1D in the context of CDDP resistance has not been studied. To illustrate the role of PPM1D in gynecological cancer cell chemoresistance and its regulation by Akt we have demonstrated that: (a) CDDP induced PPM1D down-regulation through proteasomal degradation in sensitive CECA cells; (b) CDDP induced PPM1D nuclear localization in resistant CECA cells, and nuclear exclusion in sensitive CECA cells and OVCA xenografts; (c) Over-expression of active Akt in sensitive CECA cells stabilized PPM1D content through inhibition of CDDP-induced PPM1D down-regulation; (d) Inhibition of Akt activity in resistant OVCA cells leads to decreased PPM1D stability and CDDP-induced down-regulation in resistant CECA cells; and (e) PPM1D is highly expressed in human ovarian tumor subtypes and in a tissue microarray panel of human ovarian tumors. In conclusion, we have established that PPM1D plays an important role in promoting CDDP resistance and as a novel downstream target of Akt, PPM1D mediates its action in conferring CDDP resistance in gynecological cancer cells.

Feasibility and acceptability of patient partnership to improve access to primary care for the physical health of patients with severe mental illnesses: an interactive guide.

INTRODUCTION: Even in countries with universal healthcare systems, excess mortality rates due to physical chronic diseases in patients also suffering from serious mental illness like schizophrenia is such that their life expectancy could be lessened by up to 20 years. The possible explanations for this disparity include: unhealthy habits (i.e. smoking; lack of exercise); side-effects of psychotropic medication; delays in the detection or initial presentation leading to a more advanced disease at diagnosis; and inequity of access to services. The main objective of this paper is to explore the feasibility and acceptability of patient partnership for developing an interactive guide to improve access to primary care providers for chronic diseases management and health promotion among patients with severe mental illnesses. METHODS: A participatory action research design was used to engage patients with mental illness as full research partners for a strategy for patient-oriented research in primary care for persons with schizophrenia who also have chronic physical illnesses. This strategy was also developed in partnership with a health and social services centre responsible for the health of the population of a territory with about 100,000 inhabitants in East-end Montreal, Canada. A new interactive guide was developed by patient research partners and used by 146 participating patients with serious mental illness who live on this territory, for them to be better prepared for their medical appointment with a General Practitioner by becoming more aware of their own physical condition. RESULTS: Patient research partners produced a series of 33 short videos depicting signs and symptoms of common chronic diseases and risk factors for the leading causes of mortality and study participants were able to complete the corresponding 33-item questionnaire on an electronic touch screen tablet. What proved to be most relevant in terms of interactivity was the dynamic that has developed among the study participants during the small group learning sessions, a training technique designed for healthcare professionals that was adapted for this project for, and with patient partners. CONCLUSION: This research has shown the feasibility and acceptability of patient partnership and patient-oriented research approaches to the R&D process of a new medical tool and intervention for patients with serious mental illness, and its acceptability for addressing inequity of this disadvantaged population in terms of access to primary care providers.

Citizenship and recovery: two intertwined concepts for civic-recovery.

BACKGROUND: Validation of the psychometric properties of a new measure of citizenship was required for a research project in the province of Quebec, Canada. This study was meant to study the interplay between recovery- and citizenship-oriented supportive employment. As recovery and citizenship were expected to be two related concepts, convergent validity between the Citizenship Measure (CM) and the Recovery Assessment Scale (RAS) was tested. METHODS: Study objectives were to: 1) conduct exploratory factor analyses on the CM and confirmatory factor analysis on the RAS tools (construct validity), 2) calculate Cronbach's alphas for each dimension emerging from objective 1 (reliability), and 3) calculate correlations between all dimensions from both tools (convergent validity). Data were collected from 174 individuals with serious mental illness, working in social firms. Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder, panic disorder, post traumatic stress disorder and borderline personality disorder. RESULTS: Five factors emerged from the exploratory factor analysis of the CM, with good reliability. Confirmatory factor analyses showed that the short and the long versions of the RAS present satisfactory results. Finally, the correlation matrix indicated that all dimensions from both tools are significantly correlated, thus confirming their convergent validity. CONCLUSIONS: This study confirms the validity and reliability of two tools, CM and RAS. These tools can be used in combination to assess citizenship and recovery, both of which may be combined in the new concept of civic-recovery.

[A Grand Lady and two self-made men: testimony of a patient-investigator]. / Une grande dame et deux self-made-men: témoignage d'un patient chercheur.

The psychological distress of a person, a parent in this case, can have very significant impact on family dynamics and the fate of all family members. They may become unwitting experts of mental health, by accompanying necessity and with their own vulnerabilities, sometimes trying to understand misunderstanding. This story is that of a patient-investigator who questioned the impact that mental illness has had on his professional life and his career choices. Going back to distant childhood memories, this exercise has proved to be an introspective work or observation of an individual conscience by itself. The fruit of this reflection is the story of a double conversion, spiritual and scientific, and this attempt to find sense and meaning to this personal journey becomes a socially engaged ethics of research in mental health and psychiatry.

[At the very roots of psychiatry as a new medical specialty: the Pinel-Pussin partnership]. / À l'origine même de la psychiatrie comme nouvelle spécialité médicale : le partenariat Pinel-Pussin.

OBJECTIVES: Moral treatment is a psychological approach that contrasted sharply with a treatment of constraint, beatings, immersion in cold water, diet, or repeated heavy bleeding. In response to the violent treatment that was common in asylums of late 18th century, Philippe Pinel conceived a 'medical moral treatment'. This paper considers the roots of the recovery paradigm in the pioneering work of Philippe Pinel and Jean-Baptiste Pussin. The aim is to discuss the early 19th century moral treatment to identify some key principles that can also inspire citizenship-oriented mental health care, but we also suggest that a simple equating of citizenship-oriented practice with moral treatment overlooks some of the central aspects of the recovery paradigm. METHODS: One of the main sources for this discussion is Pinel's 'Memoir on madness' (Pinel, 1794), offered for the first time to the English-speaking reader by Dora Weiner. This analysis also draws on the 'Observations of Citizen Pussin' that Pinel asked him to write for both of them to articulate fully several of the key principles of their humanistic approach. RESULTS: Looking back on the humanistic principles that were at the core of the pioneering work of Philippe Pinel and Jean-Baptiste Pussin, we suggest that the 'moral treatment' they were advocating, more than 200 years ago, was in some ways based on a genuine patient partnership, especially on peer support. The contemporary recovery movement, that might also be centered on the full exercise of citizenship, and the older 'moral treatment' have in common that they both insist that people with mental illness be treated with dignity and respect. However, while the 'moral treatment' was taking place within the asylum, the goal of citizenship-oriented mental health care is one of a life in the community for everyone. We suggest, nevertheless, that Pinel and Pussin have formulated ideas probably so forward thinking that we are just beginning to understand and try to apply them to our post-asylum practices. CONCLUSION: Pinel's philosophy of psychiatry both undergirded moral treatment and can be useful in shaping contemporary patient-centered and citizenship-oriented practice. The insights and lessons offered by Pinel and Pussin are far from being limited to the place and time of their creation. Recent advances in mental health care have been based on insights identical to those of Pinel and Pussin regarding the episodic nature of the illness, the rarity of the illness becoming all-encompassing, the reality of recovery, and the valuable roles that employment and peer mentoring can play in promoting it. We have now seen in the two hundred years that followed the publication of Pinel's Treatise the failures of asylums to provide moral treatment to persons with mental illnesse. In contrast, citizenship-oriented care stresses the importance of self-determination and the active role of the person in recovering a sense of efficacy and agency as a foundation for full citizenship for all.

[Issues, dilemmas and managerial strategies of potential ethical risks associated with the implementation of patient partnership practices in psychiatry: a case study]. / Enjeux éthiques potentiels liés aux partenariats patients en psychiatrie : état de situation à l'institut universitaire en santé mentale de Montréal.

OBJECTIVE: In terms of health and social services, the territory of the province of Quebec is covered by four large 'integrated university health networks,' which are involved in the coordination of care delivery and medical training. The francophone components of the public mental health system for Montreal are thus primarily linked to the Integrated University Health Network of University of Montreal. In 2010, the Faculty of Medicine of the University of Montreal has included in its development strategy a firm commitment to the development and implementation of the 'patient partner expertise' in research, training and care in order to make this expertise no less than the brand of the Faculty. This commitment applies to all medical specialties that are taught at University of Montreal, including in psychiatry. More recently, the Institut universitaire en santé mentale de Montréal (IUSMM) has endorsed a new clinical vision that promotes full citizenship, which implies that service users and carers are considered as full partners with a specific expertise to be fully deployed. The objective of this paper is to examine, from an ethical point of view, the challenges that may be associated with involving such lay persons in various levels of mental health care planning and delivery, and in research. METHODS: This study is mainly based on a review of the institutional processes that are in place at the IUSMM to promote service users' participation in care planning and delivery, and in research. The focus is on the practicalities and conditions for the exercise of such an active participation, as some questions and concerns emerged through a series of interviews with different stakeholders. These issues are addressed and discussed through the lenses of the ethical values that were formalized at IUSMM. RESULTS: Despite a firm institutional commitment at IUSMM to implement its new citizenship-oriented clinical vision through greater service users' involvement, little is known about the possible negative impacts of their participation, on themselves and for regular employees. There is a consensus on the symbolic value of recognizing the potential of service users as contributors, as a peer workers or peer research assistants. This is an historic advance compared to a time when they were considered only as more or less passive recipients of services or as a simple research subjects. Some risk factors were nonetheless identified: isolation, emotional fatigue, possible relapse, insecurity, sometimes tensed relations with health or research professionals and misunderstanding. In organizational terms, among the pitfalls, the study highlighted the need for more cautious preparatory steps, guidance and support for service users and for professionals as well, and the importance of a global and integrated governance strategy. CONCLUSION: This study points to three main recommendations to better anticipate and manage possible risks associated with more or less improvised service users' active participation, as lay persons, in complex planning and service delivery and in research. The first would be directed towards professionals for them to reflect on the quality of the doctor-patient relationship in their facility as to see how service users can help to improve this relationship, but among a variety of stakeholders and without being the sole responsible for such an improvement, or for the lack of improvement thereof. The second recommendation would propose to draw an objective evaluative assessment of participatory approaches at the organizational level, promoting a real return of experience and in light of the issues raised by these practices. The third would recommend an update of the organizational ethical values when introducing practices that change the current paradigms of the provision of care and services and of research.

Clinical characteristics and service use of incarcerated males with severe mental disorders: a comparative case-control study with patients found not criminally responsible.

Since the drop in the bed capacity of civil psychiatric hospitals, an increase in the bed capacity of forensic psychiatric care and prison units has been reported in the United States and Europe. However, in Canada, a decrease in the number of people with severe mental illness (SMI) during the last two decades in penitentiaries has been reported. At the same time, an increase in individuals found not criminally responsible on account of mental disorder (NCRMD) was observed in forensic hospitals. The aim of this study is to compare incarcerated severely mentally ill (I-SMI) individuals with forensic-hospitalized SMI individuals in terms of their clinical profiles and service use in the province of Quebec (Canada). A case-control study design was selected using a sample of 44 I-SMI individuals and 59 forensic-hospitalized SMI individuals. Important findings include the following: I-SMI persons had less schooling; they more often reported suicide attempts and violent and non-violent crimes; and they had a higher level of comorbidity involving Cluster B personality disorders and substance-use disorders. Forensic-hospitalized SMI persons were more likely to have been receiving psychiatric follow-up before hospitalization. The final logistic regression model showed that lifetime suicide attempts, non-violent crimes, and psychopathic traits were higher among I-SMI individuals than among forensic-hospitalized SMI individuals. In contrast, receiving regular psychiatric follow-up was associated with forensic-hospitalized SMI individuals. Differences in psychopathological characteristics and the use of mental health services were found for I-SMI persons. More research is needed to determine which new initiatives might be efficacious in addressing the mental health needs of I-SMI individuals.