Caregiver Burden Scale

Abstract

The Caregiver Burden Scale (CBS) is a specialized psychometric instrument designed to quantify the level of caregiver burden experienced by individuals providing long-term care for relatives, particularly those suffering from chronic conditions such as stroke. Developed in 1996 by Elmstahl, Malmberg, and Annerstedt, the scale is unique in its focus on assessing the multidimensional impact of caregiving across five distinct domains: general strain, isolation, disappointment, emotional involvement, and environment. It utilizes a 22-item, self-report format, providing researchers and clinicians with a robust tool to identify specific areas of stress and required intervention among the caregiving population.

Keywords

Caregiver Burden Scale, caregiver burden, chronic illness, stroke, physical rehabilitation, psychological assessment, family support, strain, isolation.

Authors

Elmstahl S, Malmberg B, Annerstedt L.

Purpose

The primary purpose of the Caregiver Burden Scale is to provide a reliable and comprehensive measure of the subjective burden experienced by informal caregivers. It was initially validated for use with family members caring for patients three years post-stroke, offering a critical long-term perspective on the challenges inherent in chronic disease management. The instrument aims to move beyond simple measures of time spent caregiving by capturing the deeper emotional, social, and environmental costs incurred by the caregiver.

By dissecting the burden into specific subscales, the CBS enables targeted clinical intervention and resource allocation. For instance, high scores on the ‘Isolation’ subscale suggest a need for enhanced social support programs, while high scores on ‘General Strain’ might indicate a requirement for respite care or more practical assistance.

Construct

The Caregiver Burden Scale measures the multidimensional construct of caregiver burden, defined as the psychological, physical, emotional, social, and financial problems experienced by a caregiver related to the tasks and responsibilities of caring for a dependent relative. Unlike scales that focus solely on objective tasks, the CBS emphasizes the subjective perception of strain and distress. The scale conceptualizes burden as consisting of five distinct, yet interrelated, dimensions:

• General Strain: Reflects practical difficulties, physical exhaustion, perceived overwhelming responsibility, and feelings of being constrained by the relative’s needs.
• Isolation: Measures the reduction in social life, avoidance of friends, and resultant feelings of loneliness and isolation due to caregiving duties.
• Disappointment: Relates to feelings of unfairness or the disparity between expected life outcomes and the current reality imposed by the caregiving role.
• Emotional Involvement: Assesses negative emotional responses toward the care recipient, such as shame, offense, anger, or embarrassment regarding the relative’s behavior.
• Environment: Focuses on external factors, including physical surroundings and neighborhood issues, that complicate the caregiving process, as well as worry about inadequate care provision.

Validity

The original validation study established the scale’s content and construct validity. Content validity was ensured by deriving items directly from clinical experience and interviews with caregivers. Construct validity was supported by the successful identification of the five hypothesized factors through exploratory factor analysis, confirming that the subscales measure distinct yet related aspects of the overall burden construct. Subsequent research often reports strong correlation with other established measures of psychological distress, depression, and quality of life, confirming convergent validity.

Reliability

The psychometric properties of the CBS demonstrated good internal consistency in the initial study, which is essential for a multidimensional scale. Reliability is typically confirmed through acceptable to good Cronbach’s alpha coefficients reported for the overall scale and its five subscales, indicating that the items within each domain are highly correlated and reliably measure the same underlying construct. This reliability is crucial for its application in assessing the long-term impact on the caregiver population.

Factor Analysis

The development of the Caregiver Burden Scale utilized factor analysis to establish its underlying structure. This analysis confirmed a clear and clinically meaningful five-factor structure for the 22 items: General Strain, Isolation, Disappointment, Emotional Involvement, and Environment. This finding supports the theoretical foundation that caregiver burden is a complex, multifaceted experience rather than a singular variable. The original study focused on demonstrating the stability and clinical relevance of these distinct factors in a population dealing with the long-term consequences of stroke.

Instrument

Test Type: Self-report questionnaire, Psychological Assessment Scale

Format: 22 items utilizing a 4-point Likert scale.

Language Available: Originally developed and published in English (based on research findings from Sweden). Other translations are commonly used in international research.

Population Group: Informal family caregivers of chronically ill individuals.

Age Group: Adult caregivers.

Population Details: Specifically validated on family members caring for patients three years after a stroke. It is broadly applicable to caregivers of individuals with various long-term physical or cognitive impairments.

Test Methodology: Respondents rate the frequency of experiencing the described strain or problem using the following scale: 1 = Not At All, 2 = Seldom, 3 = Sometimes, 4 = Often. Higher scores indicate greater perceived caregiver burden.

Keywords

Psychological strain, social isolation, emotional labor, chronic disease care, Likert scale, psychometric properties, rehabilitation, family dynamics.

Authors

Author ORCID Identifier: Not provided in source content.

Affiliation Email addresses: Not provided in source content.

Correspondence Address: Not provided in source content.

Permissions & Fee and Test Year

The scale was developed and published in 1996. Specific permission and fee details are generally managed by the journal publisher, Archives of Physical Medicine and Rehabilitation, or the original authors. Researchers typically need to cite the original article for use.

The original PDF detailing the instrument development 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?
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 Key: 1 = Not At All, 2=Seldom, 3=Sometimes, 4=Often