Exploring associations between social determinants of health and patient-reported outcome measures in oncology: Elucidating the disparities to be addressed

Social determinants of health, including income, education, and language, play an important role in cancer outcomes and survival. In Quebec, where nearly one in five residents speaks a first language other than French, language can be a particularly important barrier to accessing healthcare services and communicating effectively with care teams. These barriers may influence patients’ ability to advocate for themselves, ask questions, and engage in shared decision-making—factors that are linked to improved health outcomes.

Patient-reported outcome measures (PROMs) are standardized tools that allow patients to report symptoms and health status directly, and are increasingly used to improve communication, symptom monitoring, and clinical care. However, their effectiveness may vary depending on social factors such as education and language. This PhD project begins by examining how PROM data differ across key social determinants of health. Future phases will explore patients’ lived experiences completing PROMs and assess whether generative AI tools can help reduce barriers—particularly language-related barriers—to improve equitable use of PROMs in cancer care.

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Empowering Communication: An Exploratory Qualitative Study of the Perception of Voice Cloning in Persons with Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that often leads to severe speech impairment and, in most cases, the loss of functional speech within a short period after symptom onset. To maintain communication, individuals with ALS rely on augmentative and alternative communication (AAC) tools, including emerging technologies such as AI-based voice cloning. Unlike traditional voice banking methods, voice cloning can offer faster setup, greater flexibility, and potentially more natural-sounding synthetic voices, but its acceptability and perceived value among users remain poorly understood.

This study explores how English-speaking persons living with ALS in Quebec perceive voice cloning technology, particularly in terms of ethics, usability, emotional resonance, and identity preservation. It also examines whether perceptions of naturalness, expressiveness, and identity differ according to the severity of speech impairment. The goal is to better understand user perspectives to support the ethical and patient-centred integration of voice cloning technologies in ALS care.

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Advancing equitable health and primary health care access for English-speaking Black communities in Quebec

Language is increasingly recognized as a key determinant of health, particularly in contexts where linguistic and racial identities intersect. In Quebec, the English-speaking Black community (ESBC) occupies a unique position at the intersection of racialized minority status and official language minority status. Despite this, there is limited disaggregated data on how these intersecting identities shape access to primary healthcare and health outcomes. This gap reflects broader systemic challenges in Canadian health research, including a lack of representation of racialized populations in available data and a relative scarcity of Canadian studies compared to other countries.

Since the COVID-19 pandemic, our research team, in partnership with the Black Community Resource Centre (BCRC), has investigated health inequities affecting Black communities in Quebec. Our previous work has identified racial and linguistic disparities in healthcare experiences, including lower vaccination uptake, higher distrust in the healthcare system, reduced access to regular healthcare providers, and less access to COVID-19–related information among English-speaking Black communities compared to other groups. We also found that perceived discrimination is linked to poorer health outcomes and lower satisfaction with care. Building on these findings, this study uses Self-Determination Theory to examine how perceptions of restricted collective autonomy and language barriers shape healthcare access and dissatisfaction among ESBC populations in Quebec. The goal is to better understand the mechanisms driving inequities in healthcare experiences and outcomes, and to inform more equitable health system responses.

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Linguistic minority status and Psychosis trajectories in Québec: A study of Pathways to care and Outcomes

Psychotic disorders are among the most severe mental health conditions and often emerge during early adulthood, a critical period for education, employment, and social development. Immigrant populations and their children are disproportionately affected, yet they frequently encounter barriers to timely and appropriate mental health care. These barriers include delayed access to services, higher rates of police involvement or compulsory treatment, and increased likelihood of disengagement from care. Emerging evidence suggests that language proficiency may play an important but understudied role in shaping both access to care and long-term outcomes in psychosis.

This project examines how linguistic minority status influences pathways to care and clinical outcomes in individuals with first-episode psychosis in Montréal, particularly in a predominantly French-language treatment context. It will assess whether prior findings on treatment disengagement can be replicated in a new cohort, and explore how language background relates to key indicators such as mode of entry into care, duration of untreated psychosis, symptom progression, and vocational recovery. The goal is to better understand how language barriers shape mental health trajectories and to inform more equitable, accessible psychosis care for linguistic minority communities.

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Evaluation of the use and impact of English on access to mental health care among the Spanish-speaking Latinx minority group in Montreal

This study is about illness stories from Spanish-speaking Latinos/Latin Americans in Montreal with schizophrenia. These participants speak English, French, or Spanish. This study suggests mental health services should be provided in English and other languages. We want to show how English was used by Spanish-speaking Latinos/Latin Americans in Montreal with schizophrenia. Most people in our study used English and Spanish services. This shows there is a need for mental health services for minorities. Many of these services could reach to wider cultural populations if they were provided in English. For our participants experiencing problems, mental health services for language minorities were important. In our study, we used a questionnaire and an interview to find out more about this group. We learned that English was important for using mental health care for several participants. This study will help us understand the need for English services for this language minority group. This research supports more specific mental health care for language minorities in Montreal, including English mental health services.

Access and Equity: Evaluating Linguistic Disproportionality in Child Protection Services

In Quebec, access to social services can vary significantly for linguistic minority communities, with evidence suggesting that public policy and system organization can shape service equity. Following the 2016 merger of health and social services into the Centres intégrés universitaires de santé et de services sociaux (CIUSSS), and ongoing reforms toward Santé Québec, these large-scale restructuring efforts have been criticized for potential unintended impacts on service accessibility, particularly for minority populations. Concerns have been raised that such system changes may have contributed to disparities between communities, including those based on language.

This project investigates whether differences exist between English- and French-speaking child welfare services in Quebec. Using provincial administrative data (AS480), we will compare key indicators such as child protection signalments, time to investigation, placement availability, clinical decision-making outcomes, and adoption rates across Montreal-based agencies and other regions over the past five years, including both pre- and post-pandemic periods. The goal is to identify potential service gaps linked to linguistic context and regional variation. Ultimately, this research aims to support more equitable, timely, and consistent child welfare service delivery across Quebec’s English- and French-speaking communities.

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Learning to implement new electronic health programs: Expanding cancer care access for English-speaking Quebec patients

In Quebec, English-speaking cancer patients face language barriers in accessing healthcare services. This can cause delays and inadequate treatment leading to poorer quality of care. Electronic health platforms have the potential to improve English-speaking cancer patients’ ability to navigate the health system. E-IMPAQc is an electronic platform for cancer patients, available online or through an app that streamlines access to bilingual information, self-management tools, and coordinates patients’ appointments. My doctoral research aims to understand how e-IMPAQc can improve access to cancer care resources and delivery of services for English-speaking patients by studying the platform’s implementation process. I am conducting in-depth interviews with cancer care patients, clinicians, and e-IMPAQc implementation staff to gain insight into their experiences and how the real-world use of the platform works. The findings will directly inform e-IMPAQc’s ongoing implementation and will be published in several academic journals. The results of my study will demonstrate how electronic health platforms can be used to improve the access and delivery of care for English-speaking patients, not only in cancer, but across the Quebec healthcare system. 

Understanding the Impact of Linguistic Barriers and Stigma on English-Speaking Sinosphere Quebec Patients with First Episode Psychosis (FEP) and Their Family Members

We want to understand how negative attitudes and beliefs towards mental illness (known as stigma) affect English-speaking individuals from Sinosphere countries living in Quebec diagnosed with first episode psychosis (FEP), as well as their families. Stigma can make it harder to seek help, follow treatment, and recover. It also adds burden to their families. Therefore, it is important to recognize the challenges faced by this group. 

21.1% of Canada's visible minority population comes from East and Southeast Asian countries, including China, Hong Kong, Taiwan, Japan, Korea, and Vietnam, collectively known as the Sinosphere. Among these individuals residing in Quebec, there is a preference for English over French. Unfortunately, Sinosphere Canadians often experience poorer mental well-being and display lower rates of seeking professional help compared to others. Additionally, there is a lack of research on this specific group, which motivates us to address this knowledge gap and prioritize improving access to mental health and social services for the English-speaking Sinosphere FEP community, thereby enhancing their well-being. 

To tackle this issue, we will gather information on the experience of stigma, explore the linguistic and cultural factors that influence their experience, and find ways to reduce stigma among English-speaking Sinosphere individuals in Quebec who have FEP and their family members. We will conduct interviews with ten FEP patients and ten family members from three hospitals in Quebec. The participants must meet the following criteria: (1) they or their parents immigrated from a Sinosphere country, and (2) they prefer English as their official language. 

The intersecting impacts of racism and language barriers on the wellbeing and sense of belonging of English-speaking Black young adults in Quebec

Full title: Whether I belong, depends on whether my group belongs: The intersecting impacts of racism and language barriers on the wellbeing and sense of belonging of English-speaking Black young adults in Quebec 

The proposed three-wave longitudinal research will examine the perception of multiple forms of discrimination (i.e., racism, language barriers) experienced by English-speaking Black individuals in Quebec, a racialized and official language minority population. Following a Self-Determination Theory framework, the primary objective is to examine perception of barriers to healthcare and the basic psychological needs of collective autonomy for English-speaking Black individuals in response to racism and language barriers in every-day life. Furthermore, we will also examine whether greater barriers to healthcare and deprivation of collective autonomy will decrease psychological well-being and increase intentions to leave Quebec for English-speaking Black Quebecers, respectively. With a focus on intersecting and context-dependent forms of discrimination within the healthcare system, the current study will further our understanding on how well-being and intention to migrate are affected among racialized and official language minority populations, in the hope of informing health and social policies and developing interventions collaboratively with community partners.

Culturally Adapted Psychosis Interventions: A scoping review

First episode psychosis (FEP) typically occurs in late adolescence and early adulthood when identity is in formation and parents play a key role in care. As a result, the experience of psychosis is exceptionally distressing for youth and family who often endure this crisis without support. In FEP services Family Psychoeducation has been widely recommended as one of the key evidence-based psychosocial interventions. Family Psychoeducation consists of seminars in which the FEP caregiving team meet the families of their newly referred patients to provide education about psychosis, to listen to their concerns and to explore strategies to improve family problem-solving skills, communication skills and positive coping mechanisms. There are no FEP studies considering an adapted program specifically for linguistic and cultural minorities to make interventions better suited to the needs of patients and families. This is a glaring gap in clinical knowledge that requires urgent attention. Furthermore, recently arrived immigrant groups have the greatest need for family and community support.

Common experiences of stress, isolation, and burden experienced by families dealing with mental illness are likely to be further intensified for newly settled migrant families because of language and communication difficulties, reduced access to extended family supports, and lack of knowledge of mental health services as well as cultural differences regarding the etiology of mental illness and issues of social stigma. Through the current proposed scoping review, we aim to gather the extant literature on culturally adapted psychoeducation for families; document what gaps currently exist regarding culturally adapted psychoeducation for the families of patients with first episode psychosis (FEP) from English-speaking minority communities; and describe additional positive ingredients in psychoeducation for the families of patients with first-episode psychosis (FEP) from English-speaking minority communities. The findings of the current project will redress the knowledge gap that exists in psychoeducation in Quebec, especially for English-speaking minorities, and will clarify future directions for healthcare professionals within Quebec.

The network of health: How autonomy-supportive relationships influence linguistic barriers and vaccine hesitancy among English-speaking minorities in Québec

Objectives: The proposed three-wave prospective, retrospective, longitudinal research will examine linguistic and motivational factors that may influence vaccine hesitancy in English- and French-speaking visible and non-visible minorities living in Québec. Following a Self-determination theory framework, the main aim will be to examine whether autonomy support from social networks (comparing family and peers) interacts with motivational and linguistic barriers, and how this, in turn, interacts with vaccine hesitancy. Exploratory aims will examine and compare the variables of interest among the different groups.

The Role of Language and Cultural Background on Young Adults’ Covid-19 Vaccination Plans in Quebec

*Lay abstract currently unavailable.

The first vaccination effort against Covid-19 started in December 2020, and as of June 2021 over 2 billion doses of the Covid-19 vaccine have been administered worldwide. However, posing a problem to vaccination efforts is the concept of vaccine hesitancy which refers to a delay or refusal of vaccine services. Data prior to Covid-19 demonstrates that vaccine hesitancy was an issue in Quebec, Canada where 32.2% of respondents in a study revealed being vaccine-hesitant in general. Currently, as of June 2021, 30% of the Quebec population have not yet received their first dose of the vaccine against Covid-19. Elsewhere, a large study conducted in the UK reveals that ethnic minorities may be more reluctant to vaccinate with 72% of Blacks reporting being unlikely to get vaccinated for Covid-19. Barriers such as culture, religion, and language influence immunization decisions.

Key causes of vaccine hesitancy include misinformation through platforms such as social media and lack of health literacy in regards to knowledge about vaccines. Social media outlets such as Facebook allow individuals to connect in healthy ways. However, it also allows misinformation to spread rapidly across social networks leading to over-exposure of health-related misinformation such as anti-vaccine campaigns. A possible solution is to create policies that target the promotion of critical thinking skills in health and internet literacy especially among youth because they are heavy consumers of social media. Health literacy is defined as a set of competencies that allow individuals to make decisions concerning their quality of life and influences various health behaviours such as vaccine uptake. Health literacy has been linked to hepatitis B vaccination in men, and contributes to vaccine safety confidence as well. Thus, understanding the role of social media misinformation and health and vaccine literacy among vulnerable groups is a priority to control the spread of Covid-19.

Objectives:

1. To elucidate the language needs of at-risk vulnerable groups for vaccination services in Quebec.

2. To understand risk factors for under immunization in Quebec and promote more inclusion.

3. To gain insights on communication strategies for vaccination campaigns in a technological era

The Impact of Experience of Discrimination on Social and Health Care Service Use and Satisfaction among Racial and Ethnic Minority Family Caregivers of Older Adult Relatives in Canada

Relatively little is known about the relationships between satisfaction with services, utilizations of social and health care services and caregivers’ experiences of discrimination in Canada. Hence, this study is guided by the following research questions:

1) how do experiences of discrimination in daily life impact social and health care service use among racial and ethnic minority family caregivers of older adults? 

2) how do the experiences of discrimination in social and health care settings impact overall satisfaction with social and health care services among minority family caregivers of older adult relatives? 

3) how do caregivers and care recipients’ social locations, needs, and enabling factors impact family caregivers’ unmet needs?

Respite Care Accessibility in Montréal’s English-Speaking Disability Community: A Needs-Based Assessment

This research project will critically examine the accessibility of respite care through community integration social services for Anglophone persons with profound intellectual and/or developmental disability in Montréal. The research is guided by the hypothesis that a rationed care model, which prioritizes access to respite services for Francophone Montréal residents, creates systemic inequities that disadvantage Anglophone residents; these systemic inequities are exacerbated by the rationing of English-language services, and the subsequent prioritization of higher functioning and more youthful participants, deemed to possess “the potential to learn new skills.” As such, I will investigate the social and economic impacts of the new rationing policy on English-speaking adults for whom families are seeking respite care. Section fifteen (15) of the Act Respecting Health Services and Social Services (chapter S-4.2) states that “English-speaking persons are entitled to receive health services and social services in the English language” (1991). Nevertheless, the Anglophone families’ ability to locate and assess the acceptability of potential programs is made difficult by the fact that many important documents are available by Santé Montréal, Montréal’s health and social service network, in French only (personal communication, March 10, 2018). The exploratory research will attend to a range of variables, including access barriers for Anglophone residents and for care-seekers who are deemed to be of a lesser priority, and the felt impacts of the prioritization of disability respite services.

As such, the research will address the following inter-related questions:

(1) How does access to respite care services influence the felt impacts of the prioritization of disability respite services?

(2) In regard to linguistic barriers, what availability, accessibility, and acceptability needs are and are not being met by Anglophone disability services for the English-speaking disability community in Montréal?

A Qualitative Study on Narratives of South Asian Women with First Episode Psychosis

Research Objectives. This study will seek to explore the cultural and linguistic factors that should be considered when providing services to South Asian (SA) women with First Episode Psychosis (FEP). As we consider this question, we will focus on the real-life needs associated with SA women, as well as the challenges and barriers they face when seeking care for FEP. Careful linguistic records will be kept for the SA women identified as eligible for the study: What is their mother tongue? How well do they speak English? How does their level of English impact their lived FEP experience and the treatment that they receive? Do they express an interest to learn English? Are they given opportunities to attend school by their families to improve their linguistic skills?

Research Methodology. This qualitative study will be conducted within an ethnographic framework to identify the cultural patterns and meanings that patients ascribe to their experience with FEP, thereby enriching the data by gathering first-person accounts and experiences (Green & Thorogood, 2004).

Examining and Providing Access to Health Care Services to Official Language Minority Anglophone Caregivers and Their Minimally Verbal Children with Autism

For this proposal, I aim to; (1a) Examine access to English health services, in particular autism intervention and support services in Québec, as experienced by English-speaking (ES) caregivers and their minimally-verbal (MV) child with autism and (1b) Compare access to English autism health services between ES families residing in Québec versus the rest of Canada and (2) provide a free parent-coaching intervention aimed at increasing the child’s ability to communicate using non-spoken methods to ES caregivers and their MV child with autism. This proposal’s objectives 1 and 2 above will be completed within scope of my larger dissertation project that seeks to develop, test, and compare the effectiveness of a novel non spoken communication intervention for MV children with autism, delivered via telehealth, with that of a control intervention from the community. If effective, this model could broaden the options for service provision to this underserved group.

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Outputs:

• MacDonald. A. (February 2021). Potential Healthcare Access Barriers for English Speaking People with Autism in Québec [Virtual presentation]. Institute for Health and Social Policy’s Graduate Award Program

Acceptability of Multimedia Animations as Preoperative Multi-language Guides for Surgical Patients in Montreal

Main objective: Assess acceptability of creation and application of multimedia animation as preoperative multi-language guides for surgical patients in Montreal.

Secondary objective: Analyze patient satisfaction with pre-operative animation guides for surgeries in Montreal.

This project will be a qualitative descriptive prospective study to assess the acceptability of creation and preoperative application of disease-specific multimedia animations as multi-language guides for patients in Montreal.

Do Language and Motivational Barriers Influence COVID-19 Vaccine Beliefs, Intention, and Behavior? A Longitudinal Study among English-speaking Minorities Living in Quebec

Objectives: The proposed 3-wave retrospective and prospective longitudinal study will examine linguistic and motivational factors that may attenuate intention and uptake of the COVID-19 vaccine among young adults belonging to different language (English vs. French) and visible minority status groups living in Quebec. Based on the Self-Determination Theory (SDT; Deci & Ryan, 1985), the primary objective will identify antecedent factors that predict both vaccine intention and vaccine uptake. Exploratory aims will examine potential group differences and will test whether vaccine intention mediates the relation between motivation and vaccine uptake.

Facilitators and Barriers to Equitable Healthcare Delivery for Linguistic Minorities: A Qualitative Pilot Study of Healthcare Professionals in Montreal, Quebec, Canada

Objectives/Research Questions: 1) What do healthcare professionals perceive as barriers to healthcare access/delivery for linguistic minorities? 2) What resources do healthcare professionals in public and private settings utilize to facilitate healthcare access/delivery for linguistic minority patients?

Methods: This study will be conducted over a period of 6 months using participant snowball sampling. Data gathering will begin with interviews (conversational and guided) with a sample of 10-12 healthcare professionals from different healthcare fields (nursing, speech language pathology, physiotherapy, occupational therapy, and medicine) working in both public and private healthcare settings. With consent, audio recordings and written memos will be taken during the interviews. Data to foster reflexivity will include a detailed record of my own experiences as an upcoming healthcare professional who also identifies as part of the linguistic minority population. Data collection will be recursive, whereby observations will refine interview questions. Healthcare professionals may be invited to participate in a second interview following the initial interview to clarify any emergent questions/observations and ensure accuracy of data interpretations. Data analysis will be ongoing, critical and iterative and will occur in dialogue with relevant critical theories, published evidence, and my supervisory committee.

Interpreters Working in Mental Health Settings with Refugees: A Scoping Review

The objectives of the first phase of the project is: (1) to consolidate and map current knowledge on interpreters working in mental health settings with refugees; (2) to identify the unique issues and dilemmas that arise when interpreters are used in metal health interventions with refugees; (3) to inform the second phase of the project which seeks to explore the experiences and needs of interpreters working in mental healthcare for refugees in Quebec; (4) To contribute to the design and implementation of culturally and linguistically appropriate mental health services and policies for refugees residing in Quebec.

Given that the intention of my study is to produce an overall map of what evidence has been produced in the field of mental health interpretation with refugees, a scoping review is the most suitable review method to deploy in this case. While the review will be international in its scope, concentrating on the relatively few studies in Canada and elsewhere that examine this understudied topic, it aims to analyze the research evidence from a Quebecois perspective.