Public Awareness Of Home Care
by Leslie Jean Neal
This article first appeared in the January, 2001 CARING magazine
Acknowledgments This research was made possible by support from the National Association for Home Care and the Virginia Foundation of Independent Colleges.
This article reviews the current literature regarding public awareness of home care and describes a pilot descriptive study that addresses public awareness of home care.
How much does the lay public really know about home care? Many home care professionals will offer that they frequently encounter people, both in their professional and personal lives, who are unfamiliar with the services available and the eligibility requirements. Americans are living longer (Feder & Moon, 1999) and adult children are caring for their chronically ill parents at home with increasing frequency. A combination of legislative and regulatory changes, technological advances, changes in systems of reimbursement, and consumer preference has shifted health care to the home setting (Mackin & Forester, 1999). However, even as the interest in and need for home care grows, many clients are uninformed about the availability and nature of these services until referred by a physician or hospital discharge planner.
Research is lacking in the literature regarding the knowledge of lay persons about home care. Studies have measured patient satisfaction (Dansky, Brannon, &Wangsness, 1994; Reeder & Chen, 1994) with home health during or after patients and/or caregivers have received services. However, there is a gap in the literature regarding studies measuring lay persons' knowledge of home care.
One unpublished study (Cetron, 1985) included a telephone survey to a random sample of 1,200 adults "representative of the American public." The purpose of the study was to determine "the American public's awareness levels, attitudes, opinions, preferences and reported behaviors related to home health care...." Notable findings were the following:
Awareness of home care was strongest among females; those aged 55-64 years, and college graduates.
The following research questions were used to guide the study.
Does the lay person (non-health care professional) know what home health care is?
Does the lay person know what services are offered in the home setting?
Does the lay person know the qualifications/criteria for eligibility to receive care in the home setting?
Does the lay person know that many home health services are reimbursable by Medicare, Medicaid, and insurance?
Does the lay person know which services are reimbursed by his/her health care insurance?
Does the lay person know how to access home health care?
If the lay person has had experience with home health care, was the experience satisfactory or unsatisfactory?
"Lay person" was defined for the purposes of this study as someone who has not been or is not employed in providing health care services. Data that were obtained from people in the health care professions were excluded from data analysis.
A survey was used to obtain quantitative, descriptive data. Demographic questions included the following: gender, age, ethnic/cultural identification, state of residence, occupation, and highest level of formal education attained.
A panel of five experts in home health nursing reviewed the questions and responses on the proposed survey to obtain content validity (Polit & Hungler, 1999). The panel reviewed the survey until 80% agreement (Lynn, 1985) was reached.
After the panel of experts reached 80% agreement regarding the relevancy of the questions to the purpose of the research, the survey was mailed to a pilot group of five lay persons. One participant was included from each of the following age groups:
A focus group session was held that included all of the pilot participants. During the focus group session, pilot participants were asked to comment on the following aspects of the survey:
Changes were made to the survey and demographic questions based on the consensus of the focus group. A revised version of the survey was then sent to the content expert panel for a final review.
Seventy-six members of the National Association for Home Care (NAHC), a trade organization of home care and hospice organizations, responded to a request to participate in the study. These members received an information letter describing the study, 2 packets of 25 computerized surveys each, 25 self-addressed stamped envelopes, and 2 cover letters addressed generically to "colleague." A few agencies volunteered to distribute more than two packets. The information letter requested that the agency distribute a packet to two sources in their region. Sources included public places and doctors' and dentists' offices where people might be likely to be waiting and inclined to respond to a survey. The letter addressed to "colleague" requested support of the study from the proprietor or manager of the source location at which the surveys would be available.
Information about the study, including how to contact the researcher and reassurance that participation in the study would be anonymous was included in the survey instructions. The Marymount University Institutional Review Board approved the study.
Data were analyzed using descriptive statistics of association. Crosstabs and the contingency coefficient phi were used to establish whether there were associations among the variables. Statistical significance was set at .05 (P=.05).
Figures 1 through 4 show results for gender, age, race/ethnicity, and education. Other results are listed below.
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Participants responded from 27 states in the United States. The highest number of responses was from the Midwestern states.
Most of the participants (89%) responded that they are familiar with the terms "home health" and "home care." Additionally, 75% or 239 respondents stated that they know what services are offered in the home setting. The responses to whether or not the participant knows what services are offered were moderately associated with age and were statistically significant (phi=.338 p=.000). Participants aged 35-74 years had a higher frequency of "yes" responses than the other age groups. Fifty-six percent of the participants responded that they did not know if they are eligible to receive care in the home setting. Fifty-one percent responded that they knew how to get skilled services (listed as nursing, physical therapy, occupational therapy, speech therapy, medical social work, and nutritionist services) and 49% responded that they knew how to get support services (listed as companion/aide, homemaking, and meal delivery). Thirty percent did not respond to the question regarding support services. There was a statistically significant association between knowing how to get support services and age (phi= .320, p= .001) in that participants aged 18-54 years had a higher frequency of "no" responses than other age groups.
When asked if they knew if skilled services in the home are reimbursable by Medicare, Medicaid, and private insurances, a mean of 45% of the participants responded that they didn't know. Several participants did not respond (regarding insurance: 16%, regarding Medicare: 23%, regarding Medicaid: 38%). The participants aged 65-85+ years had a higher frequency of responses indicating that Medicare does cover services (phi=.416, p=.000). "Don't know" responses were approximately equal among age groups.
Sixty-five percent of the respondents did not know whether their insurance covers support services in the home. Participants were asked to mark each support service covered if their insurance covers support services. Eighty-four percent did not answer, indicating either that their insurance does not cover these services or that they do not know whether their insurance covers these services. Of those that responded to the question (indicating that their insurance covers support services), 24% responded that they did not know which services were covered.
When asked whether they knew if insurance, Medicare, or Medicaid covers (in part or totally) health-related equipment in the home, a mean of 53% responded that they did not know. Regarding reimbursement by private insurance or by Medicaid of health-related equipment there was a statistically significant association by age (insurance: phi=.319, p= .018; Medicaid: phi=.390, p=.000) with those aged 18-44 years responding with the highest percent of "don't know" responses. (Regarding Medicaid, those aged 45-54 years and those aged 85 years and above did not know).
Participants were asked which skilled services (nursing, physical therapy, occupational therapy, medical social work, speech therapy, nutritionist services), are reimbursed by their health care insurance. A mean of 74% responded that they did not know. Sixty-one percent of the participants responded that they did not know which skilled services are covered by Medicare and 72% did not know which skilled services are covered by Medicaid.
Seventy-three percent or 235 of the respondents had never used skilled services in the home. There was a statistically significant association between use of skilled services and age (phi= .318, p= .019). Those aged 65-85+ years had a higher frequency of "yes" (they had used skilled services in the home) responses than the other age groups (see Figure 5).
| FIGURE 5: Percentage of Respondents who had Used each of the Skilled Services | ||||
| Participants were asked to mark every skilled service they have used | ||||
| Nursing | Therapy | MSW | Nutritionist | |
| No answer | 76% | 76% | 76% | 76% |
| Yes | 20% | 12% | 8% | .9% |
Seventy-five percent or 241 respondents had never used support services in the home. There was a statistically significant association between the use of support services and age (phi=.326, p=.012). Respondents aged 45-64 years had the highest frequency of "no" responses of all age groups. Those aged 65-85+ years had the highest frequency of "yes" responses (had used support services in the home) of all age groups.
Overall, participants who have had experience with skilled or support services in the home, have had positive experiences. Forty-five percent of those respondents who had experience with skilled services had had good, very good, or excellent experiences and 44% of those who had had experience with support services had had good, very good, or excellent experiences.
There was a statistically significant association with between experience with skilled services and age (phi= .516 , p= .000). Participants aged 65-84 years had the highest frequency of "excellent" and "very good" responses. Fifty percent did not answer this question so they probably did not have experience with skilled services. There was also a statistically significant association between experience with support services and age (phi=.388, p= .018). Those respondents aged 65-84 years had the highest percent of "excellent" and "very good" responses. Those aged 55-64 years had the highest percent of "good" responses. Sixty-three percent did not answer the question implying that they did not have experience with support services.
Sixty percent or 193 of the participants had never had health-related equipment delivered to the home. There was a statistically significant association between having health-related equipment delivered to the home and age (phi= .320, p=.017). Respondents aged 65-84 years had the highest percent of "yes" responses.
Although more high school and college graduates responded than did people from other educational levels, it is interesting to note that with a few exceptions, a lack of knowledge regarding home care transcended educational levels. Figures 6 through 9 illustrate some of these findings.
| FIGURE 6: Do You Know of Any Health-Related Services in the Home Setting? | ||||||
| Elementary | Jr High | Sr High | College | Graduate | Other | |
| Yes | 53% | 52% | 73% | 86% | 86% | 55% |
| No | 47% | 48% | 24% | 14% | 14% | 44% |
| FIGURE 7: Have You Used any of these Skilled Services in the Home? | ||||||
| Elementary | Jr High | Sr High | College | Graduate | Other | |
| Yes | 27% | 48% | 28% | 19% | 14% | 0% |
| No | 60% | 48% | 71% | 81% | 83% | 100% |
| FIGURE 8: Do You Know if Medicare/ Medicaid/Insurance Covers Skilled Services in the Home? | ||||||
| Medicaid | ||||||
| Elementary | Jr High | Sr High | College | Graduate | Other | |
| Does | 40% | 29% | 11% | 10% | 7% | |
| Does not | 7% | 3% | 3% | 11% | ||
| Don't Know | 40% | 62% | 46% | 48% | 55% | 22% |
| No answer | 13% | 10% | 40% | 43% | 3% | 67% |
| Insurance | ||||||
| Elementary | Jr High | Sr High | College | Graduate | Other | |
| Does | 13% | 43% | 29% | 3% | 21% | |
| Does not | 7% | 9% | 8% | 14% | 11% | |
| Don't Know | 47% | 43% | 43% | 48% | 66% | 67% |
| No answer | 33% | 14% | 19% | 15% | 22% | |
| FIGURE 9: Have You Ever Used Support Services? | ||||||
| Elementary | Jr High | Sr High | College | Graduate | Other | |
| Yes | 33% | 33% | 17% | 14% | 14% | |
| No | 53% | 48% | 74% | 85% | 83% | 89% |
This descriptive pilot study demonstrated that there are many areas related to the subject of home care of which people are unaware. While the numbers of participants by ethnic group, educational level, state, and gender were disparate enough to prohibit accurate associations among these variables and the research questions, it was possible to make associations by age. Unlike the Cetron (1985) study, participants in the older age groups appeared to have more knowledge of, experience with, and positive perceptions of home care than did participants in the younger age groups.
If one looks at variability among groups related to ethnicity and gender, then it is possible to validate Cetron's findings regarding the awareness of these groups. For example, there was a 22% difference among males in their responses to whether or not they know if they are eligible to receive home care services. Contrast this to a 9% difference in responses by females. Additionally, it appears to make a difference among males when compared to females as to what state they reside in regarding whether they know how to get skilled services (males: phi=.924, p=.001; females: phi=.614, p=.000). Cetron found a higher level of awareness among females than males.
Further, there appears to be more variability in responses among African Americans than among the other ethnic groups regarding whether they know about eligibility for home care. This validates Cetron's finding that African Americans are less aware than other ethnic groups about home care. This study and Cetron's study also agree that those who have used home care services are favorably disposed toward them.
The results of this pilot study support Cetron's study, and both studies indicate that people of all ages require education about many aspects of home care: what it is and is not, who pays for it, and how to access it. Additionally, it appears that minorities, males, and people under the age of 65 years could especially benefit from targeted educational efforts. Home care professionals might take advantage of bloodmobiles, outpatient clinics, health fairs, and other community opportunities to raise awareness.
Interestingly, an annotated bibliography of articles on home care revealed that there is a low level of awareness among physicians regarding the complexities involved in home care (Steel, Leff, & Vaitovas, 1998). Home care professionals might consider stepping up their efforts to educate physicians so that they might educate their patients about home care.
This study will serve as a pilot for a much larger nationwide study. The expanded study will include the same survey that was used in the pilot with additional, more focused questions. These focused questions will attempt to learn more about what lay persons think about home care and how they feel about home care services and reimbursement.
About the Author: Leslie Jean Neal, PhD, RN, C, CRRN, is an Assistant Professor at Marymount University in Arlington, Virginia. She can be reached at 703/284-1589.
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