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.

Practitioner Perspectives on Linguistic Barriers in Access to Health Care for English-Speaking Minorities in Quebec

I propose to conduct a qualitative systematic review examining barriers that healthcare providers experience in providing services to linguistic minorities. In particular, the present study is designed to determine what kind of support healthcare professionals need to provide service to Anglophones in French-speaking Quebec.

Language barriers are increasingly recognized as a serious concern that creates disparities in access to health and social services (Terui, 2017). These inequalities may be reflected in access to services and healthcare delivery (Woloshin et al., 1997), as well as in low “quality of care and provider-patient relationship” (Terui, 2017, p .215). In addition, recent evidence suggests that linguistic minorities may face communication anxiety while anticipating doctor’s appointments (Zhao et al., 2021) and experience tension during appointments and low confidence in received care during (De Moissac & Bowen, 2019). 

This research project will focus on the language barriers that occur during interactions between healthcare providers and Anglophones (English speakers) in Quebec. The goal of the project is to propose feasible solutions to enhance access to health and social services in Quebec for English minority language speakers.

How Healthcare Professionals’ Communication Style Influences Black Language Minority Health Service Users’ Perceived Acceptability and Satisfaction with Healthcare Access in Quebec and Ontario

Official language minorities face language barriers when it comes to accessing health services but many of them also face racial/cultural barriers.

The healthcare system strives to ensure the health of all people equally regardless of race or language. Health-care workers communicate directly with patients and these interactions play a role in how the patients view the health care system. How the patients view the healthcare system will have implications for how they use it (Penchansky & Thomas, 1981).

The project plans to explore and highlight the importance of patient and healthcare workers communication interactions on perceptions of healthcare access from a self-determination theory perspective. The research could help protect more vulnerable groups by participating in investigations on how to reduce inequalities in healthcare access for visible and language minorities. Do health care workers’ level of language proficiency impact perceived autonomy support and perceived access to health? How do previous experiences with healthcare workers impact subsequent perceived access to health care for black linguistic minorities in Quebec and Ontario? How do race and language combine to make interactions with healthcare workers affect perceptions of autonomy support for black linguistic minorities?

The Meanings and Lived Experiences of Chronic Illness Self-Management for Culturally and Linguistically Diverse (CALD) Individuals and their Female Family Caregivers

The term culturally and linguistically diverse (CALD) refers to first-generation (foreign-born) or second-generation (having at least one immigrant parent) immigrants whose mother tongue or language spoken at home is neither English nor French. Chronic illnesses are leading causes of morbidity and mortality in Quebec, and the risk of chronic illness is increasing for CALD populations with greater time in Canada. In response to the large global burden of chronic illness, self-management has increasingly become recognized as an approach to support patients in partnering with healthcare professionals for improving their outcomes. Self-management involves the tasks (medical, behavioural and emotional), which individuals must undertake to live well with a chronic illness. However, there is limited recognition that self-management also involves family caregivers who provide most of the care to persons with a chronic illness. CALD individuals living with chronic illness face an additional burden of self-management in health care systems due to difficulties arising from culture and language. Women are more likely to be family caregivers in CALD contexts due to cultural and societal obligations, and this can result in another layer of burden for them. In view of these cumulative and intersecting burdens, there is an urgent need for meaningful definitions of chronic illness self-management that include the lived experiences of both CALD individuals and their female family caregivers.

PROJECT OBJECTIVES:

1. Explore and understand the lived experiences and meanings of chronic illness self-management for culturally and linguistically diverse individuals and their female family caregivers; and

2. Provide a critique of the assumption that self-management is not shaped by the social determinants of health, and its consequences for the study population.

Is the Frustration of Basic Psychological Needs Interacting with Language Barriers in Worsening Health Care Access for Black Young Adults during the COVID-19 Pandemic?

The present 3-wave prospective longitudinal study will examine linguistic and motivational factors that may undermine the readiness of Black young adults to seek access to mental health care during the COVID-19 pandemic year. We will also examine whether the motivational factors interact with linguistic minority status in determining how young adults adapt to the challenges of living through the worst pandemic in a century. More precisely, the main objective is to examine whether double minorities (i.e., Black Quebec Anglophones and Black Ontarian Francophones) experiencing need frustration are less likely to seek help for mental health concerns than are Black Quebec Francophones or Black Ontarian Anglophones.

Improving Access to Fertility Care and Empowerment of Linguistic Minority Patients with Infertility Through a Mobile App

The current project involves the evaluation of a mobile app developed by a multidisciplinary team of researchers and health professionals to provide targeted bilingual informational and social support resources to patients undergoing fertility treatments in Montreal. The app content will be available in both French and English and using language that aims to be accessible to everyone with fertility concerns. The educational component will include evidence-based information on a variety of fertility-related topics and presented in a way that is easy to understand and accessible to people with differing eHealth literacy levels. Specific sections will be devoted to information about infertility diagnoses, treatment options, risks to fertility, reproductive health promotion as well as how to navigate through treatments and tips on how to cope with infertility. The social support component will consist of discussion boards and a peer support network to help connect patients with others who can understand the difficulty of their situation. The app is hypothesized to have a beneficial impact on patients’ well-being (stress, anxiety and depression), perceived empowerment, quality of life, and eHealth literacy.

The principal objective of my research project is to investigate the effectiveness of a patient-centered mobile health (mHealth) intervention that delivers informational and emotional support in improving patient empowerment in infertile patients facing language barriers in Montreal.