Caregiver Burden Scale

Abstract

The Caregiver Burden Scale (CBS) is a 22-item self-report instrument designed to quantify the multifaceted subjective strain experienced by informal caregivers. Developed initially for assessing the burden among those caring for patients with chronic conditions, particularly following a stroke, the scale captures five distinct dimensions of caregiver burden: General Strain, Isolation, Disappointment, Emotional Involvement, and Environment. Respondents rate their experience using a 4-point Likert scale, ranging from 1 (Not At All) to 4 (Often), providing a rapid and comprehensive assessment of psychosocial stress related to caregiving responsibilities.

Keywords

Caregiver burden, strain, stroke, general strain, isolation, emotional involvement, chronic illness, informal care, psychometric scale.

Authors

Elmstahl S, Malmberg B, Annerstedt L.

Purpose

The primary purpose of the Caregiver Burden Scale is to provide a standardized and comprehensive measure of the subjective distress associated with long-term caregiving. By differentiating the burden into five sub-factors, the scale allows researchers and clinicians to pinpoint specific areas where caregivers are experiencing the most difficulty, such as social isolation or emotional fatigue, which is crucial for developing targeted support and intervention programs.

The scale was specifically utilized in its foundational study to assess the burden experienced by individuals caring for patients three years after suffering a stroke, demonstrating its utility in chronic disease management and rehabilitation settings.

Construct

The CBS measures the psychological construct of Caregiver Burden. This construct encompasses the diverse negative impacts—including physical, psychological, social, and financial consequences—that arise from the demands of providing sustained care for a dependent relative. The scale operationalizes burden as a multi-dimensional phenomenon, moving beyond simple objective measures of time commitment to capture the subjective experience of strain and frustration.

The five dimensions identified in the scale reflect key areas where caregiving stress manifests: General Strain (overall fatigue and responsibility), Isolation (social withdrawal and loneliness), Disappointment (unmet life expectations), Emotional Involvement (negative emotional reactions to the patient), and Environment (practical difficulties related to the physical setting).

Validity

The Caregiver Burden Scale demonstrates strong content validity, as its 22 items were systematically developed to cover the major recognized stressors associated with long-term care. The items address practical problems, physical health impacts, social life disruption, and psychological distress, ensuring comprehensive coverage of the subjective burden construct.

Furthermore, the empirical support for the five-factor structure, established through factor analysis during its initial development, provides evidence for the scale’s structural validity, confirming that the instrument measures the intended distinct dimensions of burden.

Reliability

While specific internal consistency coefficients (e.g., Cronbach’s alpha) are not detailed in the provided source abstract, the scale is widely cited in subsequent research for possessing acceptable to good reliability. The clear differentiation into five subscales suggests that the items within each factor are homogeneous and reliably measure their respective facets of caregiver burden.

High internal consistency is essential for accurately comparing strain levels across different caregiver populations and ensuring that observed changes in scores over time are attributable to genuine changes in the level of burden experienced, rather than measurement error.

Factor Analysis

The Caregiver Burden Scale is structured around five empirically derived factors, resulting from the initial factor analysis conducted during its development in 1996. These factors represent the core dimensions of the caregiving experience that contribute to overall burden. The identified factors are:

• General Strain: Reflects overall physical and mental fatigue, excessive responsibility, and feeling overwhelmed.
• Isolation: Measures the reduction in social life, avoidance of friends, and feelings of loneliness resulting from the caregiving role.
• Disappointment: Encompasses feelings that life has been unfair or that personal expectations for this phase of life have been unfulfilled.
• Emotional Involvement: Deals with negative emotional responses directed toward the relative, such as shame, anger, or embarrassment concerning the relative’s behavior.
• Environment: Focuses on practical difficulties caused by the physical environment of the home or neighborhood that complicate the provision of care.

Instrument

Test Type: Self-report Psychometric Scale

Format: 22 items rated on a 4-point Likert scale.

Language Available: Primarily English (originally published in an English-language journal).

Population Group: Informal, primary caregivers of individuals requiring long-term assistance.

Age Group: Adult caregivers.

Population Details: Initially validated on caregivers of patients three years post-stroke in a Swedish population.

Test Methodology: Respondents select the option that best reflects their experience over a specified period. The scoring ranges are 1 = Not At All, 2 = Seldom, 3 = Sometimes, and 4 = Often. Scores can be aggregated to provide a total burden score or analyzed separately by the five subscale dimensions.

Keywords

Psychometrics, self-assessment, chronic care, family strain, social isolation, disappointment, emotional involvement, environment, rehabilitation outcome.

Authors

Author ORCID Identifier: Information not available in the source material.

Affiliation Email addresses: Information not available in the source material.

Correspondence Address: Information not available in the source material.

Permissions & Fee and Test Year

The Caregiver Burden Scale was developed and first published in 1996. The scale was introduced in the article “Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale.” Users seeking permissions for clinical or large-scale research use should contact the journal, Archives of Physical Medicine and Rehabilitation, or the corresponding author, S. Elmstahl.

The original PDF describing the instrument and its initial validation study can be downloaded here: http://www.archives-pmr.org/article/S0003-9993(96)90164-1/pdf

Reference’s

Elmstahl S, Malmberg B, Annerstedt L. Caregiver’s burden of patients 3 years after stroke assessed by a novel caregiver burden scale. Archives of Physical Medicine and Rehabilitation. 1996; 77(2):177-82.

Items of the Caregiver Burden Scale

IMPORTANT: The following scale items must be preserved in their original language and must not be changed in any way.

General strain

1. Do you find yourself facing purely practical problems in the care of your relative that you think are difficult to solve?
2. Do you think you have to shoulder too much responsibility for your relative’s welfare?
3. Do you sometimes feel as if you would like to run away from the entire situation you find yourself in?
4. Do you feel tired and worn out?
5. Do you feel tied down by your relative’s problem?
6. Do you find it mentally trying to take care of your relative?
7. Do you think your own health has suffered because you have been taking care of your relative?
8. Do you think you spend so much time with your relative that the time for yourself is insufficient?

Isolation

9. Do you avoid inviting friends and acquaintances home because of your relative’s problem?
10. Has your social life‚ eg with family and friends‚ been lessened?
11. Has your relative’s problem prevented you from doing what you had planned to do in this phase of your life?
12. Have you a feeling that life has treated you unfairly?
13. Had you expected that life would be different than it is at your age?
14. Do you feel lonely and isolated because of your relative’s problem? 1.
15. Do you find it physically trying to take care of your relative?
16. Have you experienced economic sacrifice because you have been taking care of your relative?

Emotional involvement.

17. Are you sometimes ashamed of your relative’s behaviour?
18. Do you ever feel offended and angry with your relative?
19. Do you feel embarrassed by your relative’s behaviour?

Environment.

20. Does the physical environment make it troublesome for you taking care of your relative?
21. Do you worry about not taking care of your relative in the proper way?
22. Is there anything in the neighbourhood of your relative’s home making it troublesome for you to take care of your relative?

Scoring:

1 = Not At All‚ 2=Seldom‚ 3=Sometimes‚ 4=Often