Research & Publications
Are you aware of any research or publication that may interest caregivers? Please contact us and we can post it here.
Supporting young carers in Canada (May 2025) - a publication in the "Canadian Family Physician" about young caregivers, their challenges and a case study for early community support.
Caring in Canada: Survey insights from caregivers and care providers across Canada (May 2024) - an in-depth analysis of caregiver demographics, challenges and needs in Canada.
Giving Care: An approach to a better caregiving landscape in Canada (2022) - first policy white paper for Canadian Centre for Caregiving Excellence. The whitepaper is the first in a series of actions planned by CCCE to rally support for policy creation to establish a coordinated approach to caregiving. Media coverage, with quotes from Caregivers Nova Scotia Executive Director Jenny Theriault.
Home and Community-based Palliative Care: Shaping the Future from Lessons Learned during the COVID-19 Pandemic (2021) - report by Health Canada.
From Risk to Resilience: An equity approach to COVID-19 (2020) - latest report on the state of public health in Canada. In her report, Dr. Tam discusses why a health equity approach is critical for pandemic preparedness, response and recovery. The report also highlights the need to act collectively across society. We can and are all doing our part, by taking care of one another.
Together with the University of Alberta: Research on Aging Policies and Practice (RAPP) and AGE-WELL, Caregivers Nova Scotia Association is happy to promote two NEW infographic fact sheets. Caregivers in Nova Scotia: impact of caregiving on well-being and Caregivers in Nova Scotia: economic costs and contributions. These sheets highlight information on unpaid family and friend Caregivers in our province and illustrate the staggering impacts of caregiving.
What We Heard Report: Informing a dementia strategy for Canada (2019) - Following the enactment of the National Strategy for Alzheimer's Disease and Other Dementias Act, the Public Health Agency of Canada sought to further understand the impacts of dementia in Canada by engaging six stakeholder groups which included family/friend caregivers. Executive Director Angus Campbell was invited to attend the National Dementia Conference as part of this stakeholder engagement, and to represent caregivers in Nova Scotia and ensure their voices were heard. This report summarizes the ideas and perspectives that were raised.
Growing need for non-paid eldercare continues to largely disrupt the work of women: IWH study (2019). This article summarizes the findings of an Institute for Work and Health (IWH) study that looks at what impact caregiving has on men's vs. women's participation in the labour force. To read the full research paper, click here.
We Should Care More About Caregivers (2019) - In this editorial on Vulnerable Populations for the Canadian Medical Association Journal, Nathan Stall, MD gives a clear summary of important research on caregiving, and a compelling argument on why Canada needs to do more to care for its unpaid caregivers. Note: Caregivers Nova Scotia does not use, nor support the use of, the term informal caregiver.
November 2018: Caregivers vital to health-care system but often untrained and unsupported: report (2018). Read The Change Foundation's Spotlight on Caregivers Report here.
November 2018: Largely unrecognized role of youth caregivers illuminated in new study (2018). This article interviews a few of the researchers and describes the study in detail. There is a link to the study itself in the Journal of Adolescence at the end of the article.
Ms. Understood: The Heart & Stroke 2018 Heart Report focuses on why we still struggle to untangle and apply new knowledge about women and heart disease, and why some women — Indigenous women, ethnically diverse women, women living in poverty, and women in remote and rural locations — often face even greater inequities.
Caregivers in Distress: A Growing Problem - This report, produced by the Office of the Seniors Advocate in British Columbia takes an in-depth look at caregivers and caregiver distress in BC. This follows their 2015 report Caregivers in Distress: More Respite Needed, and paints a similar picture.
Leaving Some Behind: What Happens When Workers Get Sick (2015) - In this report, issued by the Institute for Research on Public Policy (IRPP), the IRPP's findings and recommendations highlight the need for a significant renewal of Canada’s income, disability and employment support system. The report also discusses the role of family & friend caregivers, both as workers themselves or as the caregiver to the worker who becomes ill: pages 5, 6, 17-18, 23, and 37 may be of interest.
Caregiver Tele-Group Support: Evaluation Report (2015) - CNS and the Dalhousie School of Occupational Therapy identified a need to develop a pragmatic support program for caregivers who are unable to attend in-person support groups. This led to the creation of the Caregiver Tele-Group Support (CTGS) program – a telephone support group for family/friend caregivers, which was piloted in the fall of 2014. The report discusses the initial data gathered from this program.
Continuing Care - A Path to 2017. Review, Refocus, Renewal (2015) - A report on the results of an evaluation of the NS provincial Continuing Care Strategy. The evaluation was requested by Health & Wellness Minister Leo Glavine as the strategy's 10-year mandate ends in 2017.
Navigating caregiving, chronic conditions a strain on Canadians, according to survey
Stats Canada Report Reinforces Urgent Need for Home Care in Canada (2014). Unpaid caregivers are increasingly relied upon to fill in the gaps in service and are at higher risk of having unmet needs for help or care themselves.
Rising to the Challenge: Responding to the Increasing Demands for Home Care (2014). This report looks at the current state of home care, demand for services now and in the future, and the capacity of the sector and its partners, such as family/friend caregivers, to provide care.
Knowledge and skills needed by carers to look after terminally ill patients at home (2014) - This U.K. study looks at the lived experiences of family/friend carers providing care for an adult receiving palliative care at home. It also explores carers’ experiences about what they need to know in order to provide care and the practical skills that carers believe they need for their role.
Young Canadians Providing Care (2014) - This is an analytical paper based on data from the 2012 General Social Survey.
A Guide to Balancing Work and Caregiving Obligations CHRC
National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses (2013) - A loved one’s mental health problem or illness often impacts family, friends, and supporters. Caring for a person living with a mental illness often creates emotional, physical, financial and social burdens for caregivers. The Mental Health Commission of Canada has created guidelines for policy makers and service providers that seek to recognize and support family caregivers’ needs, including recommendations on services and supports caregivers find useful.
Family Caregiving, What Are the Consequences? - Report from the General Social Survey (2012)
Portrait of Caregivers 2012 - Report from the General Social Survey (2012)
Aboriginal Health Care Report (2012) - This report on Canada's health care performance is a pan-Canadian look at progress to date in home and community care, health human resources, telehealth, access to care in the North and health indicators.
Respite Care in Canada (2012) - This brief explores the respite care landscape in Canada with the purpose of: broadening awareness of the current respite experience among key stakeholders, including family/friend caregivers, care and service providers, health planners, policymakers, and the Federal government.
Home Alone: Family Caregivers Providing Complex Chronic Care (2012) - The results of this U.S. study challenge the common perception of family caregiving as a set of personal care and household chores that most adults already do or can easily master. The report recommends actions including encouraging healthcare professionals and providers to reassess the way they interact with caregivers, ensuring that they are well trained and prepared to perform difficult tasks, revising how caregiving tasks are labeled and identified, and including family caregivers’ needs in the development of new models of care.
National Advance Care Planning Framework - The long-term goal of the project is to raise the awareness of Canadians about the importance of advance care planning and to equip them with the tools they need to effectively engage in the process. The secondary goal is to prepare professionals/healthcare providers with the tools they need so they can facilitate and engage in the process of advance care planning with their clients.
Seniors in Need, Caregivers in Distress (2012) - explores the growing issue of home care in Canada. The report takes a deeper look at the seniors who are receiving home care, the family caregivers that are lending support, as well as the challenges of home care in Canada.
Supporting Caregivers and Caregiving in an Aging Canada (2011) - In this Institute for Research and Public Policy (IRPP) study, author Janice Keefe presents an overview of caregiving in Canada today, including the financial and other costs incurred by unpaid caregivers and the type and extent of public support they receive.
Evaluating Canada's Compassionate Care Benefit From the Perspective of Family Caregivers (2010) - This study aimed to provide policymakers with the information required on how to improve the CCB program and better meet the needs of family caregivers in Canada.
Seniors Caring for Seniors (2010) - This international literature review carried out by the Canadian Association of Occupational Therapists focuses on current understandings of older adult caregivers in the context of the physical impacts of engaging in caregiving.
Supporting Informal Caregivers— The Heart of Home Care - This CIHI study provides planners and policy-makers with a starting point for an evidence-informed discussion on caregiver distress and its potential impact on the healthcare system.
Balancing Paid Work and Caregiving Responsibilities: A Closer Look at Family Caregivers in Canada (2009) - this report seeks to increase our understanding of what it means to be an employed caregiver in Canada today.
Who Cares and How Much? The imputed economic contribution to the Canadian healthcare system of middle-aged and older unpaid caregivers providing care to the elderly (2009) - What if the unpaid care provided by Canadians to the elderly were replaced by paid care providers? How can we assess the value of unpaid caregiving to the healthcare system? Authors Hollander, Liu, and Chappell examine these questions through detailed analysis of data from Statistics Canada's 2002 General Social Survey (GSS) and the (2007) Labour Force Survey, as well as a scan of the literature.
A Portrait of Unpaid Care in Nova Scotia (2006) - is the first in a series of documents presenting research findings. It is part of a larger program of research entitled A Healthy Balance: A community alliance for health research on women’s unpaid caregiving. This report focuses on the scope of caregiving in Nova Scotia with particular attention to understanding the relationship between caregiving and its impact on the health and economic condition of caregivers and care receivers. This research is what led to the first edition of The Caregiver's Handbook (2007).