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Development and Validation of a PREM for Client Experience in Home and Community Care

Researcher bios and how their research backgrounds relate to this study

Dr. Justine Giosa is a research scientist and health care leader with a 10-year track record of bridging the knowledge to practice gap in aging research and health care delivery. In her role as Managing Director, SE Research Centre Justine oversees a diverse research portfolio and leads a team of researchers, ensuring they are supported to execute high quality research, evaluation and knowledge mobilization work. Justine is an Adjunct Assistant Professor in the School of Public Health and Health Systems at the University of Waterloo, where she teaches a survey design course and collaborates on research grants with the Geriatric Health Systems Research Group. Justine's research focuses on integrated geriatric care planning and delivery across the continuum of care and authentic engagement of older adults, family/friend caregivers and health and social care providers in health system change.

Purpose of this research project

People want to live well, with dignity and safety, in their homes and communities for as long as possible. To support this, some home care services in Ontario are restructuring to integrate home care focused on medical and personal care, with community-based social care and services such as friendly visiting, meals and transportation. Measures of client experience, referred to as ‘patient-reported experience measures’ (PREMs) are important for guiding health system improvements, yet current tools are insufficient for measuring client experience of these new models of home and community care. The purpose of this project is to develop and validate a PREM for the client experience of new and emerging models of home and community care that promote health equity, continuity, and the meeting of life care needs. This study will develop a new PREM that can be used to accurately identify, monitor, and address the concerns and priorities that matter most to clients of integrated home and community care. This new measure will be implemented to evaluate innovative models at SE Health and will also be made available to other organizations and teams in Ontario (e.g., Ontario Health Teams) to support the design and measurement of positive health system change through Ontario Health Teams and beyond.

How this research will help LGBT2SQ people and communities

Some clients and caregivers of home care services report experiencing discrimination regarding language, gender, disability, sexual orientation, race, and age (Daley, Brotman, MacDonnell, & St Pierre, 2020; Yakerson, 2021). Immigrant seniors as well as those who are racialized, or whose first language is not English are more like to report unmet home care needs, yet also use home care services less frequently than white Canadian-born seniors, indicating inequitable access to home care (Laher, 2017). Clients and caregivers who are members of the LGBT2SQ+ communities have reported experiences of overt and subtle heterosexism and discrimination from home care service providers (Grigorovich, 2015), and ageism is found throughout the healthcare system, often shaping the attitudes and practices of healthcare providers that stereotype older people as less capable and of lower status (Pritchard-Jones, 2017). These types of discrimination lead to health inequity and have real impacts on services such as clients feeling unsafe and not using services (Pritchard-Jones, 2017; Wyman, Shiovitz-Ezra, & Bengel, 2018). This study aims to ensure client experiences in regards to equity are capture within a new PREM, which can be used to support health system improvements in this area.

Participants

a. Clients of SE Health’s home care services and other provincially funded home care services in Ontario who are currently receiving home care or who have received home care in the past
b. Caregivers of clients receiving home care services in Ontario who are currently receiving home care or who have received home care in the past.

Compensation

Home care clients and caregivers will have the opportunity to receive a $50.00 gift card to acknowledge their time and valued contributions to the research study.

Mitigation measures

There are no risks to participants from participating in this study but taking part in this study may make someone feel uncomfortable while discussing experiences and ideas. Participants may decide not to answer questions or stop participating at any time if they experience any discomfort. The research team members are available to talk about discomfort and can work with participants to find additional support if needed/requested.

Promoting the Study

The study has been promoted via SE Health twitter, facebook, and LinkedIn. Direct to patient advisory groups, shared through Ontario Health Teams leaders, and shared with the Canadian Frailty Network.

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