Living with a Life-Limiting Illness: Access to Care and Related Experiences (LLLI-ACRE)

Data are collected under the authority of the Statistics Act, Revised Statutes of Canada, 1985, Chapter S-19. Your information will be kept strictly confidential.

Data sharing agreements

To avoid duplication of surveys, Statistics Canada may enter into agreements to share the data from this survey with provincial and territorial ministries of health. The ministries of health may make the data available to local health authorities.

Provincial and territorial ministries of health and local health authorities would receive the survey responses and the postal code.

Quebec residents

To avoid duplication of surveys, Statistics Canada may enter into agreements to share the data from this survey with provincial and territorial ministries of health and the Institut de la statistique du Québec. The Institut de la statistique du Québec and the ministries of health may make this data available to local health authorities.

Provincial and territorial ministries of health, the Institut de la statistique du Québec, and local health authorities, would receive the survey responses and the postal code.

These organizations have agreed to keep the data confidential and use it only for statistical purposes.

Record linkage

This study is anonymous. No effort will be made to link responses to information collected from any other surveys or data sources.

The questionnaire is designed to capture a wide range of experiences and perspectives and is structured into two distinct question streams: one for individuals living with a life-limiting illness and another for unpaid caregivers of those living with a life-limiting illness.

Participants will be asked questions about their access to care and related experiences including the following topics: needs assessments, care planning, the composition of their care team, comprehensive & coordinated care, pain and symptom management, care settings, transitions in care, caregiver support, and their understanding of what palliative care includes.  

Data are also collected on a number of socio-demographic variables which may allow for analysis by various characteristics, such as age, gender, geography or ethnicity. 

Statistics Canada publishes the results of its surveys in many formats. To find all the documents related to this survey, follow the links below and type the name of the survey in the search engine located at the left of your screen to filter the results.

Data: You will find tables, profiles of a community or region, thematic maps, public use microdata files, and data visualization tools.

Analysis: You will have direct access to Stats in brief (e.g., releases from The Daily, fact sheets), articles and reports, and journals and periodicals.

What is the purpose of this study?

The purpose of the study Living with a Life-Limiting Illness: Access to Care and Related Experiences (LLLI-ACRE) is to better understand the care experiences of individuals living with a serious illness and their unpaid caregivers, including access to care and support services. The study will provide information on experiences and satisfaction with the care received to meet physical, psychological, social, and spiritual needs, as well as gaps and barriers in care.

Why is this study important and what kind of questions will I be asked?

The results of this study will help health care organizations and providers improve the development, planning and delivery of high-quality care for those living with a life-limiting illness and their unpaid caregivers in Canada.

The study asks a variety of questions about access to care, care needs, challenges in accessing care, and experiences with services.

Do I have to participate in this study?

It is important that we have data from a wide range of Canadians who are living with a life-limiting illness and their unpaid caregivers. Your responses are key and sharing your experiences is important as your participation will help ensure that study results reflect the stories of people like you.

Although participation is voluntary, results can be used to highlight where the health care system is meeting the supportive and palliative care needs of Canadians and where improvements may be needed.

How long does the questionnaire take to complete?

The time required to complete the questionnaire varies from person to person. On average, the study may take up to 30 minutes to complete.

Who has access to the study data that you collect?

There are data-sharing agreements between Statistics Canada, the provincial and territorial ministries of health, as well as the Institut de la statistique du Québec (for Quebec data) to share the information collected from this study. The reason for this is to reduce the burden on respondents, and to reduce the cost of data collection. The information you provide can only be shared with your consent. These organisations are also prohibited by law from disclosing any identifiable information based on data collected by Statistics Canada.

When will the results of the study be made available to the public?

It is anticipated that the results of the study will be available to the public in the spring of 2025.

Are children asked any questions?

This study targets two types of participants aged 15 years and older: those living with a life-limiting illness, and unpaid caregivers who are looking after (or have looked after) those with a serious illness in the last two years. Children under the age of 15 will not be asked to complete the study themselves. However, it is possible for a caregiver who is looking after (or who has looked after) a child under the age of 15 to complete the study.

How will you safeguard the confidentiality of my information?

Any information you provide will remain confidential pursuant to the Statistics Act. Statistics Canada takes the privacy of Canadians very seriously. Published data can never identify you. To find out more about the measures in place to safeguard the confidentiality of your information, visit Statistics Canada’s Trust Centre.

Will you use my name? Will my name be put on a mailing list?

No identifying information will be collected and kept. We will only collect the postal code to measure differences in experiences and accessibility across different geographical regions.

Why should I answer questions that I feel are too personal or an invasion of my privacy?

We realize that some questions are personal, but keep in mind that we get many answers from many people. These answers are grouped together and used to produce overall statistics. It will not be possible to identify any of your responses in the materials released to the public. Even after agreeing to participate in the study, you may choose not to answer specific questions where you feel uncomfortable providing a response.

Why do you need this information? Could it not be obtained from other sources?

There is very limited data available on access to, and experiences with supportive care for those living with a serious illness in Canada, especially nationally or across the provinces and territories. There are some administrative data sources, but they are limited in scope and geography. The focus of this study is to evaluate access to care and individual’s experiences which are not easily captured by administrative sources.

Who is sponsoring this study?

This study was developed in consultation with experts from Health Canada, the Canadian Institute for Health Information, and the Public Health Agency of Canada.

The LLLI-ACRE Supporter Toolkit contains products and resources to help you and your organization spread the word and encourage participation in the study Living with a Life-Limiting Illness: Access to Care and Related Experiences.