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

Detailed information for 2022 to 2024

The purpose of the study Living with a Life-limiting Illness: Access to Care and Related Experiences (LLLI-ACRE) is to better understand the experiences and access to care for individuals with life-limiting illnesses and their unpaid caregivers.

Data release - Scheduled for Spring 2025

• Questionnaire(s) and reporting guide(s)
• Description
• Data sources and methodology
• Data accuracy

Description

This study aims to provide information on the experiences and satisfaction with the care received, and any gaps and barriers to supportive care for those living with a life-limiting illness and their unpaid caregivers in the provinces and territories. This is the first time a study of this kind, on this topic is being conducted by Statistics Canada.

This study is conducted as a crowdsource, which is a non-probabilistic method of collecting data by inviting members of the target population to voluntarily participate in the study. The open nature of a crowdsource allows participation by those who would not otherwise be included in the frame for a probabilistic study. Additionally, it was not possible to create a frame from which a random sample of those living with a life-limiting illness or their unpaid caregivers could be selected. Instead, eligible participants from across Canada are invited through promotional announcements to access an online link that brings them to the questionnaire to be completed.

The information collected and resulting analysis will help health care organizations and providers improve the development, planning and delivery of palliative care in Canada and ensure that those living with a life-limiting illness have access to high-quality care and support for their unpaid caregivers.

Reference period: 2022 to 2024

Collection period: October 2024 to January 2025

Subjects

• Diseases and health conditions
• Health care services
• Mental health and well-being

Data sources and methodology

Target population

The target population consists of Canadian residents aged 15 years or older living with a life-limiting illness or unpaid caregivers of those living with a life-limiting illness in the previous two years.

Instrument design

The questionnaire content was developed by Statistics Canada's Centre for Population Health Data in collaboration with experts at Health Canada, the Canadian Institute for Health Information and the Public Health Agency of Canada. There are two modules in the questionnaire, one for the individual living with a life-limiting illness and one for the unpaid caregiver, with approximately 85 questions each. Each participant is asked to complete one module only.

Qualitative testing of the questionnaire in the form of one-on-one interviews was conducted by Statistics Canada's Questionnaire Design Resource Centre, in both official languages. The electronic questionnaire application then underwent extensive testing to ensure it was working as designed.

The study content was developed as an electronic questionnaire to be completed online by the participant themselves. No telephone interviews or follow-ups are planned.

Sampling

Sample selection is not applicable as responding to this study is voluntary for anyone living with a life-limiting illness or their unpaid caregivers within Canada.

Data sources

Data collection for this reference period: 2024-10-08 to 2025-01-31

Participation in this crowdsourcing initiative is voluntary.

Data are collected directly from participants.

Data collection is conducted exclusively online by participant self-completion of an electronic questionnaire.

Participation in the study was encouraged with various promotional efforts including:
- Recruitment of partner organizations to help promote the study (Call for Collaboration - Living with a Life-Limiting Illness: Access to Care and Related Experiences)
- The development of a promotional toolkit
- Reminders to organizations to promote the ongoing study throughout collection
- Social media campaign
- Stakeholder email asking for help to promote the study.

Proxy reporting was only permitted for individuals with life-limiting illnesses, and not for unpaid caregivers. Participants had the choice to complete the questionnaire in English or French. The average time to complete the questionnaire was estimated to be at 30 minutes.

View the Questionnaire(s) and reporting guide(s) .

Error detection

Electronic files containing the daily transmissions of completed respondent study records are combined to create the "raw" data file. Before further processing, verification is performed to drop non-response and out-of-scope records.

After the verification stage, editing is performed to identify errors and modify affected data at the micro level for age, gender and postal code. Subsequent to this, invalid characters are deleted, and the remaining data items are formatted appropriately.

Imputation

Valid values of the postal code (or its first three digits or first digit in the absence of a complete postal code) were used to derive a province of residence, and a Census Metropolitan Area (CMA) when possible.

No imputation was performed on questions left unanswered by participants.

Estimation

Because of the non-probabilistic nature of the crowdsourcing data collection, a probability of selection was not available given the absence of a sample design and a survey weight was not calculated. Furthermore, no adjustment was made for non-response as the concept of a non-response rate is not applicable in the crowdsourcing context.

Because of the non-probabilistic nature of crowdsourcing, results should be limited to proportions and totals should not be produced.

Results obtained from this crowdsource pertain only to the participants and should not be used to draw conclusions about the general population.

Quality evaluation

While an outlier detection process is used on the crowdsourced data, caution must be exercised when interpreting these data because data collection is conducted on a voluntary basis and therefore subject to multiple biases.

Disclosure control

Statistics Canada is prohibited by law from releasing any information it collects that could identify any person, business, or organization, unless consent has been given by the respondent or as permitted by the Statistics Act. Various confidentiality rules are applied to all data that are released or published to prevent the publication or disclosure of any information deemed confidential. If necessary, data are suppressed to prevent direct or residual disclosure of identifiable data.

Revisions and seasonal adjustment

This methodology type does not apply to this study.

Data accuracy

As crowdsourcing is based on a non-probability sample, measures of sampling error such as variance, coefficients of variation, margins of error, or confidence intervals should not be calculated.

Moreover, since crowdsourcing data are collected from self-selected volunteers, the data are subject to multiple biases.