Resources and  Links

In its Request for Proposals, the Change Foundation has identified several major research questions that need to be answered. These are:

• Is the provision of care by informal caregivers changing?

• What is the impact of these changes?

• What factors are influencing these changes?

• What are the social, economic, and health policy requirements to address the growing burden of care?

Realizing that change can only be revealed through several studies that take place over a period of time, the Change Foundation has indicated its interest in supporting a series of studies with a longitudinal design with a view to tracking the changing patterns of informal caregiving and their implications for individuals and families.

The proposed study, therefore, is the first in a series of studies of informal caregiving that the Change Foundation plans to conduct.

To address these issues listed above, the research team has formulated a series of objectives which are presented as follows:

1. To identify approaches for measuring the extent of caregiving which could be used in subsequent longitudinal studies and to examine their pros and cons;
2. To design research methodologies and construct instruments in order to measure or describe the nature of caregiving;
3. To design research methodologies and construct instruments in order to measure or describe perceived caregiver burden;
4. To identify factors that may affect the nature of caregiving and develop measuring instruments;.
5. To identify factors that may affect perceived caregiver burden and develop measuring instruments;
6 To develop an overall research strategy, which is effective and economical, in tracking changes in the extent of caregiving, nature of caregiving, and perceived caregiver burden; and
7. To discuss the social and economic implications of and health/social-policy responses to informal caregiving.

RESEARCH METHODOLOGY

The proposed feasibility study will focus on four sets of variables: Extent of caregiving, nature of caregiving, perceived caregiver burden, and factors influencing the nature of caregiving and perceived caregiver burden. Different methodologies and/or instruments will be used to measure each of these four set of variables. The methodologies are briefly described as follows.

1. Literature Search, Review, and Synthesis

An extensive search and review of the literature will be conducted. The literature review will serve at least three purposes. First, it will reveal what is known about informal caregiving and informal caregivers, particularly in the Canadian (or Ontario) context. Second, the literature review will inform both the theoretical and methodological approaches to be adopted in the proposed study and will guide the selection of factors to be examined. Third, it may help identify instruments for measuring different variables.

2. Developing a Strategy to Measure Extent of Caregiving

Possible approaches include conducting a province-wide survey on informal caregiving on a periodic basis, piggybacking on other surveys such as the National Population Health Survey or the General Social Survey, and developing indicators of informal caregiving using existing data. While a province-wide survey may yield a wealth of information, an approach that relies on secondary data or other surveys may be more affordable.

3. Measuring the Nature of Caregiving

As noted previously, nature of caregiving refers to the characteristics of care provided by informal caregivers. Unlike perceived caregiver burden, this set of variables captures the objective aspects of informal caregiving, such as the amount of time spent on providing care, types of care provided, types of skill required, health problems of the care recipient, loss of income by the caregiver, etc.
If available and deemed appropriate, existing instruments will be adopted for the surveys to be conducted. Some of them may need to be modified. Other instruments may have to be developed by the research team. The adopted, modified, and newly developed measuring instruments will be pilot tested on a sample of caregivers and potential caregivers in order to determine their suitability and their ability to indicate change over time.

4. Measuring Perceived Caregiver Burden

Perceived caregiver burden is the subjective assessment by an individual of his/her ability to cope with the informal caregiver role, as well as the psychosocial consequences of providing informal care. It is typically measured by such variables as stress level, role strain, and quality of life. The literature review may shed some light on the concept of caregiver burden, identify its different dimensions, and suggest some instruments that could be used to measure it. Other measuring instruments will be modified or developed, where necessary.
The adopted and newly developed instruments for measuring perceived caregiver burden will be pilot tested on a sample of caregivers and potential caregivers in order to determine their suitability and their ability to indicate change over time.

5. Identifying Factors that Affect Caregiving

Looking after sick or disabled persons for an extended period of time may give rise to perceived caregiver burden, but it is also possible that two individuals providing the same type and amount of care could experience different levels of burden. Thus, it would be important to identify and examine the major factors that may affect the nature of caregiving and perceived caregiver burden. Some of these factors are identified as follows:

• Socioeconomic and demographic factors: Age, sex, occupation, educational background, socioeconomic status, family structure, and social network could be important control variables.

• Other factors relating to the caregiver: Factors such as locus of control, skill set, and care efficacy will likely be important control variables for perceived caregiver burden.

• Factors relating to the care recipient: How sick or dependent the care recipient is and the relationship between the care recipient and the caregiver are examples of factors that may influence both the nature of caregiving and perceived caregiver burden.

• Policy and structural factors: As noted before, government or corporate policies and programs to support informal caregivers could ease some of the caregiving burden. Other factors such as availability of formal care, access to information and support could also be important.

How these and other factors affect the nature of caregiving and perceived caregiver burden will be tested, using data from the surveys.

6. Surveys of Caregivers

Two surveys will be conducted, one at the beginning of the study period and the other toward the end of the study period. The purpose of these surveys is twofold. First, the surveys will generate data to test the instruments and to initially examine the relationships between the nature of caregiving and perceived caregiver burden and various control variables. Second, the two surveys will allow the research team to test how sensitive the measuring instruments are to changes over a period of time (albeit a relatively short one).

7. Addressing Policy Issues

The discussion of social and economic implications of and health/social-policy responses to informal caregiving will be informed by the literature review and the results of the surveys. As well, members of the research team will interview a number of individuals who are knowledgeable about or have extensive experience in informal care. Information and views from these diverse sources will be synthesized from a policy perspective and presented in the final report.

This work is being carried out by The Change Foundation and the Centre for Rural and Northern Health Research, at Laurentian University

Tracking Changes in Informal Care: A Feasibility Study
A. Salmoni, R.W. Pong, R. Mannell, E. Rukholm, and L. Martin*

The health care system in Ontario is transforming from a predominantly institutional to a community-based focus. Increasingly, informal care is becoming an extension of formal care. This study is the first in a series of studies that will examine changes in informal care, how informal care is affected by changes in the health care system, and how growing demand for care is affecting the caregivers. As a feasibility study, it seeks to develop an overall research strategy for tracking changes in informal caregiving and clarify conceptual and methodological issues.

Data collection took place in Sudbury, Waterloo and Toronto.

(funded by the Change Foundation)



(Names in bold denote CRaNHR investigators and research staff. Names with an * denote former CRaNHR investigators and research staff.)

4 August 1999

Back to Top

Caregivers Of Mentally Ill Risk Physical Illness