Louise Normandin’s research while affiliated with University of Montreal Hospital Research Centre and other places

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Publications (23)


Figure 1 Chronology of the support and communicate with families (SCF) team's interventions and mandates.
Figure 2 Perceptions of health professionals and managers of the work performed by the support and communicate with families team to address the needs of families/relatives.
Telephone calls conducted by the support and communicate with families team with relatives and clinical team members
Clinical selection criteria used to organise a visit to an end-of-life patient by care unit type Cold care units* Warm care units † and hot care units ‡
Characteristics and number of interventions for end-of-life visits and humanitarian visits for therapeutic purposes End-of-life visits Humanitarian visits
In-depth mixed-method case study to assess how to support and communicate with the families of hospitalised patients during COVID-19: a social innovation embedded in clinical teams
  • Article
  • Full-text available

October 2024

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8 Reads

BMJ Open

Louise Normandin

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Cécile Vialaron

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Imane Guemghar

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[...]

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Objectives The purpose of this study is to describe and evaluate, in a real-life context, the support and communicate with families (SCF) team’s contribution to maintaining communication and supporting relatives when patients are at the end of their lives by mobilising the points of view of SCF team members, healthcare professionals, managers and the relatives themselves. Design An in-depth mixed-method case study (quantitative and qualitative). Individual interviews were conducted with members of the SCF team to assess the activities and areas for improvement and with co-managers of active COVID-19 units. Healthcare professionals and managers completed a questionnaire to assess the contribution made by the SCF team. Hospitalised patients’ relatives completed a questionnaire on their experience with the SCF team. Setting The study was conducted in a university teaching hospital in the province of Québec, Canada. Participants Members of the SCF team, healthcare professionals, managers and relatives of hospitalised patients. Results Between April and July 2020, 131 telephone communications with families and healthcare professionals, 43 support sessions for relatives of end-of-life patients and 35 therapeutic humanitarian visits were carried out by members of the SCF team. Team members felt that they had played an active role in humanising care. Fully 83.1% of the healthcare professionals and managers reported that the SCF team’s work had met the relatives’ needs, while 15.1% believed that the SCF team should be maintained after the pandemic. Fully 95% of the relatives appreciated receiving the telephone calls and visits, while 82% felt that the visits had positive effects on hospitalised patients. Conclusion The COVID-19 pandemic forced the introduction of a social innovation involving support for and communication with families. The intention of this innovation was to support the complexity of highly emotional situations experienced by families during the COVID-19 pandemic.

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Main themes emerging from interviews with accompanied patients
The black box of the relationship between breast cancer patients and accompanying patients: the accompanied patients’ point of view

July 2024

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60 Reads

BMC Cancer

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.



Figure 1. Overall view of the intervention indicating key time points for data collection during (A) the pretransplant period and (B) the posttransplant period. CO: connected object; GRIT-F: guichet rapide d'investigation en transplantation du foie (rapid liver transplant assessment service); HCP: health care professional; LT: liver transplant.
Validated questionnaires for patient data collection and evaluation.
Telehealth-Delivered Program and Accompanying Patients to Enhance the Clinical Condition of Patients Throughout a Liver Transplant: Protocol for a Mixed Methods Study

March 2024

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52 Reads

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1 Citation

JMIR Research Protocols

Background Liver transplantation (LT) is indicated in patients with severe acute or chronic liver failure for which no other therapy is available. With the increasing number of LTs in recent years, liver centers worldwide must manage their patients according to their clinical situation and the expected waiting time for transplantation. The LT clinic at the Centre hospitalier de l’Université de Montréal (CHUM) is developing a new health care model across the entire continuum of pre-, peri-, and posttransplant care that features patient monitoring by an interdisciplinary team, including an accompanying patient; a digital platform to host a clinical plan; a learning program; and data collection from connected objects. Objective This study aims to (1) evaluate the outcomes following the implementation of a patient platform with connected devices and an accompanying patient, (2) identify implementation barriers and facilitators, (3) describe service outcomes in terms of health outcomes and the rates and nature of contact with the accompanying patient, (4) describe patient outcomes, and (5) assess the intervention’s cost-effectiveness. Methods Six types of participants will be included in the study: (1) patients who received transplants and reached 1 year after transplantation before September 2023 (historical cohort or control group), (2) patients who will receive an LT between December 2023 and November 2024 (prospective cohort/intervention group), (3) relatives of those patients, (4) accompanying patients who have received an LT and are interested in supporting patients who will receive an LT, (5) health care professionals, and (6) decision makers. To describe the study sample and collect data to achieve all the objectives, a series of validated questionnaires, accompanying patient logbooks, transcripts of interviews and focus groups, and clinical indicators will be collected throughout the study. Results In total, 5 (steering, education, clinical-technological, nurse prescription, and accompanying patient) working committees have been established for the study. Recruitment of patients is expected to start in November 2023. All questionnaires and technological platforms have been prepared, and the clinicians, stakeholders, and accompanying patient personnel have been recruited. Conclusions The implementation of this model in the trajectory of LT recipients at the CHUM may allow for better monitoring and health of patients undergoing transplantation, ultimately reducing the average length of hospital stay and promoting better use of medical resources. In the event of positive results, this model could be transposed to all transplant units at the CHUM and across Quebec (potentially affecting 888 patients per year) but could also be applied more widely to the monitoring of patients with other chronic diseases. The lessons learned from this project will be shared with decision makers and will serve as a model for other initiatives involving accompanying patients, connected objects, or digital platforms. International Registered Report Identifier (IRRID) PRR1-10.2196/54440


Care and services partnership in Quebec birthing centres: myth or reality?

March 2024

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19 Reads

BMC Pregnancy and Childbirth

Context Working with women to best meet their needs has always been central to midwifery in Quebec, Canada. The creation of birthing centres at the end of the 1990s consolidated this desire to prioritize women’s involvement in perinatal care and was intended to encourage the establishment of a care and services partnership between care providers and users. The aim of this pilot study is to evaluate the perceptions of clients, midwives and birth assistants of the way in which women are involved in partnership working in Quebec birthing centres. Methods A single qualitative case and pilot study was conducted with midwives (n = 5), birth assistants (n = 4), a manager (n = 1), clients (n = 5) and members of the users’ committee (n = 2) at a birthing centre in Quebec, Canada in July and August 2023. The partnership was evaluated using the dimensions of a validated CADICEE questionnaire. Results The women and professionals stressed that the relationship was established in a climate of trust. The caregivers also attached importance to autonomy, information sharing and decision-making, adaptation to context, empathy and recognition of the couple’s expertise. The women confirmed that they establish a relationship of trust with the professionals when the latter show empathy and that they adapt the follow-up to their knowledge and life context. Key factors in establishing this kind of care relationship are the time given, a de-medicalized environment, the comprehensive care received, and professionals who are well-informed about the partnership. In addition, the birthing centre has a users’ committee that can put forward ideas but has no decision-making powers. Conclusions Both the women and the professionals at the birthing centre appear to be working in partnership. However, at the organizational level, the women are not involved in decision-making. A study of all birthing centres in Quebec would provide a more comprehensive picture of the situation.


Factors leading to recommendations
Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors

January 2024

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79 Reads

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3 Citations

BMC Health Services Research

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.


How to mobilise users' experiential knowledge in the evaluation of advanced technologies and practices in Quebec? The example of the permanent users' and relatives' panel

January 2024

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26 Reads

Introduction With the purpose of supporting scientific professionals and helping them to better integrate the expertise of users in their work, a users' and relatives' panel (URP) was set up at the National Institute for Excellence in Health and Social Services in Quebec (INESSS), Canada for the social services and mental health directorate. URPs are advisory structures that mobilise the experiential knowledge of people affected by various issues. Objectives The objective of this study is to assess from a diverse stakeholders' perceptions: (1) the experience of developing and implementing the URP within the context of an Agencies for Health Technology Assessment and Assessment of Social Services (AHTAASS), (2) the contribution of such a URP, (3) the challenges encountered and (4) the perspectives of improvement for the following years. Methodology We conducted a qualitative descriptive evaluation study. Nineteen interviews were conducted: six with URP members and 13 with staff representatives. The documents related to the creation of the panel, the URP minutes summarising the discussions and the reports published during that period were collected and analysed. Following a preliminary round of data analysis, a debriefing meeting was conducted with a few participants to validate the results. Results The panel was set up as part of the INESSS' desire to better integrate experiential knowledge into its recommendations. Twelve projects were presented to the panel on various themes. The URP enabled health professionals to consider dimensions they had not identified, to better integrate the experiential data collected from users into their work and to develop recommendations that made more sense to users. Panel members and INESSS professionals learned to work together, moving the working methods from consultation to collaboration and even coconstruction. Based on the panel's significant contribution, the INESSS decided to maintain it and to strengthen its place in its system to better integrate the experiential knowledge of users into its work. Conclusion This research illustrates how AHTAASS can set up a URP composed exclusively of users, and how it can contribute and be evaluated. It shows that URPs are structures that value the sharing of experiential knowledge of its members, humanise decision‐making and give meaning to the work done by scientific professionals. Patient or Public Contribution One patient–researcher has contributed to the preparation and writing of this manuscript.


Telehealth-Delivered Program and Accompanying Patients to Enhance the Clinical Condition of Patients Throughout a Liver Transplant: A Research Protocol (Preprint)

November 2023

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11 Reads

BACKGROUND Liver transplantation (LT) is indicated in patients with severe acute or chronic liver failure for which no other therapy is available. With the increased number of LTs in recent years, liver centers worldwide must manage their patients according to their clinical situation and the expected waiting time for transplants. The LT clinic at Centre Hospitalier de l’Université de Montréal (CHUM) is developing a new healthcare model across the entire continuum of pre-, per-, and post-transplant care that features patient monitoring by an interdisciplinary team including an accompanying patient (AP), a digital platform to host a clinical plan, a learning program, and data collection from connected objects (COs). OBJECTIVE (1) To evaluate the outcomes following the implementation of a patient platform with connected devices and an AP, (2) to identify implementation barriers and facilitators, (3) to describe service outcomes in terms of health outcomes and the rates and nature of contact with the AP, (4) to describe patient outcomes, and (5) to assess the intervention’s cost-effectiveness. METHODS Six types of participants will be included in the study: (a) patients who received transplants and reached one-year post-transplantation before September 2023 (historical cohort/control group); (b) patients who will receive an LT between December 2023 and November 2024 (prospective cohort/intervention group); (c) relatives of those patients; (d) APs who have received an LT and are interested in supporting patients who will receive an LT; (e) healthcare professionals; and (f) decision-makers. In order to describe the study sample and collect data to achieve all the objectives, a series of validated questionnaires, AP logbooks, transcripts of interviews and focus groups, and clinical indicators will be collected throughout the study. RESULTS Five working committees (steering, education, clinical-technological, nurse-prescriptions, and AP committees) have been established for the study. Recruitment of patients is expected to start in November 2023. All the questionnaires and technological platforms have been prepared and the clinicians, stakeholders, and AP personnel have been recruited. CONCLUSIONS The implementation of this model in the trajectory of LT recipients at CHUM may allow for better monitoring and health of transplant patients, and ultimately reduce the average length of hospital stay and promote better use of medical resources. In the event of positive results, this model could be transposed to all transplant units at CHUM and across Quebec (potentially affecting 888 patients/year), it but could also be applied more widely to the monitoring of patients with other chronic diseases. The lessons learned from this project will be shared with decision-makers and will serve as a model for other initiatives involving accompanying patients, COs or interactive platforms. CLINICALTRIAL



Citations (10)


... With the steadily growing role of telehealth in healthcare service delivery, the issue of confidentiality and privacy of patient information is one of the major issues that should be resolved with the highest priority. The development and establishment of tough cybersecurity procedures can minimize the chances of telehealth services getting compromised [5]. This way, both patients and healthcare providers are sure that their integrity and confidentiality are assured. ...

Reference:

Cybersecurity Protocols for Telehealth: Developing new cybersecurity protocols to protect patient data during telehealth sessions
Telehealth-Delivered Program and Accompanying Patients to Enhance the Clinical Condition of Patients Throughout a Liver Transplant: Protocol for a Mixed Methods Study

JMIR Research Protocols

... To help patients develop their skills and competencies, peers complement the expertise of other members of the clinical team. They embody a role model into which the patients can project themselves, thereby understanding how their behaviours and treatments can have an impact on their health [81,87]. ...

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

BMC Health Services Research

... This study revealed that patients with higher scores on self-management e cacy were more likely to belong to the "low PD group than to the other two groups. This means that high scores in self-management e cacy were associated with lower levels of psychological distress among AYAs with thyroid cancer, consistent with previous studies [43]. Self-management effectiveness was de ned by the Cancer Experience Research Collaboration UK as an individual's approach to coping with cancer or other life-threatening illnesses and its impact on illness and quality of life [44]. ...

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

BMC Cancer

... PPs can be involved not only in mental health but also oncology [78], rehabilitation [79] and chronic diseases and conditions [80]. They help improve the quality and safety of care and restore meaning to the work of professionals [81]. They also help reduce patient anxiety and improve quality of life [77]. ...

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

... Building on this model, another contribution suggested that these vulnerabilities include not only impairments in selfregulation (often reflected in borderline traits) but also in selfesteem (reflected in narcissistic personality features) (Benzi et al. 2024;Somma et al. 2020). Previous research has shown that these features are associated with internalizing and externalizing dimensions of psychopathology, indicating a complex interplay between personality traits and general psychopathology Biberdzic et al. 2022;Sharp 2020). ...

A bifactor model of personality organization in adolescence: the validity of a brief screening measure assessing severity and core domains of functioning

BMC Psychiatry

... 30 Furthermore, the SCF team is a fairly unique intervention model in the literature, by virtue of the fact that it facilitates face-to-face visits and has an impact on an entire institution. This intervention complemented the deployment of tablets and smartphones to less seriously ill patients, 24 courtesy telephone calls made by volunteers 31 and even home monitoring using a mobile application. 32 Such initiatives have also been carried out in other countries. ...

Reducing social isolation during the COVID-19 pandemic: Assessing the contribution of courtesy phone calls by volunteers

... SE Health's RPM platform, for example, supports post-discharge care by tracking patient progress in real-time, which helps to detect and address potential complications before they necessitate readmission. This continuity of care fosters better recovery outcomes and reinforces RPM's role in maintaining patient health beyond the hospital setting (1)(2)(3)(4)(17)(18)(19)(20)(21). ...

Healthcare Professional Perspectives on the Use of Remote Patient-Monitoring Platforms during the COVID-19 Pandemic: A Cross-Sectional Study

Journal of Personalized Medicine

... Early involvement in an ICP tends to promote views among clinicians that these pathways are supportive tools that enhance rather than limit clinical practice. A number of studies have reported that involving clinicians in developing care pathways can increase their sense of ownership and decrease resistance to adoption (13,14). In addition, efforts to highlight how ICPs would allow practitioners to reduce cognitive load, make decisions more quickly and effectively, and manage patients more efficiently can ease some concerns about the perceived administrative burdens (15). ...

Patient engagement in care: A scoping review of recently validated tools assessing patients' and healthcare professionals' preferences and experience

... To attract enough PPI contributors, they must be adequately compensated financially, beyond any non-material benefits they may experience by contributing. This argument favours having more PPI contributors considered active members of a project team (Pomey et al. 2021) and on the project's payroll. ...

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

... In addition, drawing up intervention plans with the person with a health condition, caregivers (if necessary) and the support of an accompanying patient helps avoid misunderstandings with the clinical team, thereby improving the experience for patients [77]. PPs can be involved not only in mental health but also oncology [78], rehabilitation [79] and chronic diseases and conditions [80]. They help improve the quality and safety of care and restore meaning to the work of professionals [81]. ...

The patient advisor, an organizational resource as a lever for an enhanced oncology patient experience (PAROLE-onco): a longitudinal multiple case study protocol

BMC Health Services Research