Behavioral Risk Factor Surveillance System (BRFSS) Caregiver Module

Informal or unpaid caregiving, which is providing regular care or assistance to family and friends with chronic illnesses or disability conditions, is an important public health issue and is a critical element of long-term services and supports in the US.^1,2

There are two initiatives supporting the public health surveillance of caregiving to aid in the development of appropriate strategies and policies to assure the health and well-being of caregivers.

1. In Healthy People 2020,³ two objectives target caregivers and could be addressed through increased surveillance:

• Older Adults: Objective OA-9 –  Reduce the proportion of unpaid caregivers of older adults who report an unmet need for caregiver support services (Developmental)
• Disability and Health: Objective DH-2.2 – Increase the number of state and DC health departments that conduct health surveillance of caregivers for people with disabilities.

1. Several actions in The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013–2018 [PDF–2.1M] [PDF – 2 MB], focus on the BRFSS Caregiving module⁴

Starting in 2015, states can add the revised 8-item Caregiving module to their BRFSS survey. This module will allow states to understand the:

• Percentage of people who self-report as being a caregiver
• Relationship between the caregiver and the care recipient
• Average hours of caregiving per week
• Types of assistance needed by the care recipient
• Major health problem, long-term illness, or disability of the care recipient
• Length of time as a caregiving
• Type of assistance most needed by the caregiver
• Percentage of adults aged 18 years or older who are not caregivers who expect to be caregivers in the future

View the Revised 8-item 2015 BRFSS Caregiver module [PDF-220K] [PDF – 352 KB]

Family and friends who provide care to people with chronic illnesses and disabling conditions are the backbone of the long-term care system in the US and help to enable people with limitations to remain in their homes and in their communities.^1,2 There is also increasing evidence that caregivers enable better chronic disease self-care and health promoting behaviors among people with chronic conditions.^5-9

Caregivers themselves may have chronic health conditions, and providing care to others may interfere with their own self-care, as they give their attention to others. The Caregiver Module enables the collection of information about the health, quality of life, and behaviors of caregivers to better understand their activities and needs. States can use the module to raise awareness of caregiving and to highlight current and future public health needs for caregivers.

The original BRFSS Caregiver Module, fielded 2006-2009 was developed with input from an expert panel of caregiving researchers and stakeholders. It was pilot-tested in North Carolina in 2005 and then underwent revisions based on responses and a follow-back survey. The 10-item module was cognitively tested and was included as an optional module on the BRFSS in 2008-2012.

Beginning in 2013, the CDC’s Healthy Aging Program worked with an expert panel including BRFSS coordinators and caregiving researchers to revise the module. In 2014, three new rounds of cognitive testing were completed. As a result, slight modifications were made to the wording of the questions and several response categories were simplified. The module was revised in 2015 to 8-items.

The module was updated for the 2015 BRFSS to reduce the number of questions from 10 to 8 and to improve and refine the content. Several response categories were simplified, including the care recipient’s health problem, the duration of caregiving, and the hours of care per week. Three questions were added to assess whether the caregiver assists with personal care needs or with household needs, and the type of service most needed by caregivers (unmet need). Additionally, a question was added for respondents who currently do not provide care or assistance, inquiring about their expectations to provide care in the future.

The 10 item module was officially approved as an optional module in 2009 and was used as optional module or state-added questions in by the following states:

2009: Illinois, Louisiana, New York, Ohio, District of Columbia (caregiver screening item included on BRFSS core)*
2010: Connecticut, New Hampshire, New Jersey, New York, Tennessee, Texas*
2011: New Jersey, North Carolina
2012: California, Georgia, Indiana, Iowa, Maine, Mississippi, Missouri, Oregon, West Virginia, Wisconsin
2013: Arkansas, Illinois, Oregon
2014: No States

* Due to changes in BRFSS methodology, data from prior to 2011 should not be combined with data from 2011 or later.

View the previous version [PDF – 271 KB].

The revised 8 item module is scheduled to be used in the following states:
2015: Alabama, Florida, Hawaii, Idaho, Illinois, Indiana, Iowa, Kentucky, Louisiana, Maine, Maryland, Mississippi, Nebraska, New Jersey, New York, Oregon, Pennsylvania, South Carolina, Tennessee, Utah, Virginia, West Virginia, Wisconsin, Wyoming

View the Revised 8-item BRFSS Caregiver module [PDF – 352 KB]

The module captures a broad range of caregivers, including those who provide care for only a few hours per week and those who are not the primary caregiver. It is important to remember that the BRFSS is used to survey households and does not include residents of nursing homes, group homes, or other facilities. In addition, if the selected respondent is unable to respond to the survey because of physical or mental problems, the entire household is removed from the sample. Thus, respondents who complete the survey have been deemed by themselves or another household member to be mentally fit to respond to the survey.

In 2011, the BRFSS modified its methods to include cell phones, and changed its method of weighting. Because of these changes, pre-2011 survey data cannot be combined with data from 2011 and beyond BRFSS for multi-year analyses

In partnership with the Alzheimer’s Association, several states used data from their state’s BRFSS survey to identify challenges faced by caregivers of persons with Alzheimer’s disease or another form of dementia. The following Regional Caregiving Reports were produced:

• Illinois, Louisiana, Ohio, and the District of Columbia [PDF-813K], 2009
• Connecticut, New Hampshire, New Jersey, New York, and Tennessee [PDF-326K], 2010
• States and the District of Columbia, 2009-2010 Combined [PDF-353K]

For additional reports and fact sheets using the BRFSS Caregiver Module, visit:  http://www.alz.org/publichealth/data-collection.asp#caregiver

More information can be found at CDC’s BRFSS site. An Analytical Guidance document is available by contacting your state BRFSS coordinator or the Healthy Aging Program for more information.