Survey Finds Widespread Concern, Support for Congressional Action on the Quality of Care for People with Chronic Conditions
During 1999 and 2000, Harris Interactive conducted a national survey of 1,663 Americans over age 18 to examine public awareness of chronic care issues and support for chronic care policy initiatives, and the experiences and needs of the chronically ill, as well as those of informal caregivers.
- Respondents were concerned about the quality of care received by people with chronic conditions, and a majority want Congress to find solutions to the issues involved with chronic care.
- Two-thirds of those surveyed who do not have a chronic condition believe that they are likely to develop one, and they worry that they will become a burden to their families.
- Those surveyed with chronic conditions reported that there are ongoing challenges in receiving care, including difficulty seeing the appropriate physician, inadequate insurance and receiving contradictory information from health professionals.
- More than three-quarters of all respondents said they would volunteer to help a chronically ill person even though the person was not a friend or relative; if a faith-based organization coordinated the volunteer program, 93 percent said they would be more or equally likely to volunteer.
- Those surveyed with chronic conditions said they are reluctant to ask for help; only 31 percent of them would ask for help from outside their family.
- When the caregivers needed help, the largest percentage of them (41 percent) cited local religious and community organizations as sources of assistance, while 25 percent indicated relatives.
The Robert Wood Johnson Foundation (RWJF) supported this project through a grant of $225,034.
Some 125 million Americans have at least one chronic condition, such as Alzheimer's disease, HIV/AIDS, paralysis, asthma, allergies and diabetes. RWJF has long funded research and demonstration projects that focus on those with chronic conditions, including projects for volunteer care giving, clinical care management, assisted living and other community-based supports.
As part of RWJF's initiative to improve the care of Americans with chronic conditions, it issued a $225,034 contract to Louis Harris and Associates (since renamed Harris Interactive) to prepare and conduct a survey on issues and experiences related to chronic illness and caregiving. The objectives of the survey were: to assess public awareness of chronic care issues and the level of support for policy initiatives; to examine experiences and needs of chronically ill Americans concerning health care, personal assistance, social supports and other issues; and to evaluate experiences and needs of informal caregivers.
Early in the project, Faith In Action, RWJF's national program that makes grants to multi-faith local volunteer groups who care for those who are chronically ill, frail or elderly, and the School of Public Health at Johns Hopkins University, joined in designing the research survey. In 1999, working with Johns Hopkins, RWJF formed a new national program, Partnership for Solutions, to raise awareness of the problems of chronic illness and to develop public and private solutions to them.
Harris Interactive fielded the survey through phone interviews in English and Spanish from March 17, 2000, through November 22, 2000, with a total of 1,663 adults 18 years of age and older. The study included a national cross-section of 1,490 adults, and an additional oversample of persons with a chronic illness and adults who provide informal caregiving services; altogether, there were 663 chronically ill adults interviewed and 320 caregivers.
Using the March 1999 Current Population Survey from the U.S. Census Bureau, Harris weighted the survey data to reflect the demographic composition of the U.S. population as to: age; education; race/ethnicity; insurance status; household size; number of telephone lines in a household; and to represent the appropriate distribution of chronically ill adults and caregivers in the country. All respondents answered the same battery of questions; however, the chronically ill and caregivers addressed additional questions related to their particular experiences.
In a report to RWJF, the grantee organization reported the survey findings including the following:
- A majority of those surveyed (72 percent) say it is difficult for chronically ill people to get necessary care from their providers. They also felt that they have difficulty getting necessary care from specialists (79 percent), obtaining prescription drug medications (74 percent), finding adequate health insurance (89 percent) and getting help from their own families (78 percent).
- Nearly all of those surveyed want Congress to find solutions to the issues involved with chronic care. Some 92 percent are in favor of government-funded long-term care insurance; 85 percent support a tax break for people who purchase private long-term care insurance; 92 percent support a tax break for caregivers; and 94 percent favor adding a prescription drug benefit to the Medicare program.
- Two-thirds of the adults surveyed who do not have a chronic condition believe that they are likely to develop one at some point in their lives. Many worry that if this happens, they will be unable to afford needed medical care, will lose their independence and will become a burden to their families.
- Those surveyed who have chronic conditions or are caregivers say there are ongoing challenges in receiving care. Some of the complaints were: that the chronically ill were not able to see a primary care physician in the past year when they felt it was necessary (10 percent); that their insurance does not cover all types of needed care (22 percent); and that the costs of care are a financial burden (45 percent). Fourteen percent reported that in the past year, different doctors diagnosed them with varied medical problems for the same set of symptoms, and 16 percent had been warned by a pharmacist about a possibly harmful interaction between medications prescribed for them by one or more physicians.
- Family caregivers surveyed provided care for a loved one for 4.5 years, on average, with the unpaid help of four friends or family members. When the caregivers needed help, the largest percentage of them (41 percent) cited local religious and community organizations as sources of assistance, while 25 percent indicated relatives, and 7 percent mentioned friends.
- More than three out of four adults (77 percent) surveyed report that they would volunteer to help to a person who needs it because of a chronic condition even though the person is not a friend or relative. An even higher number (93 percent) would be more or equally likely if a faith-based organization coordinated the volunteer program.
- Those with a chronic condition say they are reluctant to ask for help; only about one-third would ask for it from outside the family. Of those who would ask for help, 79 percent said they would be likely to contact a community or religious group if they knew that one were available, and 90 percent said they would be equally or more likely to accept help if it were from a group sponsored by a local religious congregation.
Many survey findings were posted on the Partnership for Solutions Web site (no longer available). Faith in Action prepared a report of survey findings specific to faith-based volunteerism. Harris Interactive submitted a report of findings to RWJF, called Chronic Illness and Caregiving: Survey of the General Public, Adults with Chronic Conditions and Caregivers, and placed the data file and documentation in the database of the Inter-university Consortium for Political and Social Research ICPSR), available online.
The grantee organization prepared a report, Chronic Illness and Caregiving: Survey of the General Public, Adults with Chronic Conditions and Caregivers, and submitted it to RWJF. The majority of survey results appeared on the Partnership for Solutions Web site (not available as of May 2007).
Faith in Action prepared a report with survey findings specific to caregiving and faith-based volunteerism, releasing it at the announcement of RWJF's expansion of the program on March 28, 2001.
Per RWJF's request, Harris Interactive placed the data file and documentation from the survey in the database of the Inter-university Consortium for Political and Social Research (ICPSR), available online.
AFTER THE GRANT
Although this completes the project, both Partnership for Solutions and Faith In Action continue to use the study findings to inform their work.
GRANT DETAILS & CONTACT INFORMATION
Public Opinion Survey of Chronic Care Issues
Louis Harris and Associates (New York, NY)
Dates: September 1999 to September 2000
Kinga Zapert , Ph.D.
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Chronic Illness and Caregiving: Survey of the General Public, Adults with Chronic Conditions and Caregivers. New York: Harris Interactive, 2001.
Findings of National Research on Caregiving and Faith-Based Volunteerism. Princeton, N.J.: Robert Wood Johnson Foundation-Faith In Action, 2001.
Harris Interactive, Chronic Illness and Caregiving. Fielded nationally with oversampling in Youngstown, Ohio, and Binghamton, N.Y. MarchNovember 2000.
Report prepared by: Mary B. Geisz
Reviewed by: Janet Spencer King
Reviewed by: Marian Bass
Program Officer: Stuart M. Schear