Jyotsna
M. Kalavar, Ph. D. & John Rapano
Penn
State University
ABSTRACT
Homebound
seniors are an “invisible” segment of the gerontological population in rural
communities. This study was based on interviews conducted with 196 homebound
seniors in Fayette, Greene, and Schuylkill counties of Pennsylvania. First, this
paper focuses on varying approaches employed to recruit this “hard to reach”
population. Next, challenges faced by the research team with actual conduct of
the interviews are mentioned. Last, this paper examines the qualitative data
from the structured interview conducted in-home. These open-ended questions
sought to understand the experience of being homebound, as well as issues of
formal service provision.Findings suggest that homebound seniors perceive their
situation negatively. Nearly half of all seniors suggested an improvement in
advertising of services that are offered. Nearly one-third of all respondents
did not indicate a need or desire for services.Yet, when probed about a desired
program, nearly half of the participants suggested a visitation or
socio-recreational program.
One
of the more important social trends over the last several decades has been the
demographic change that reflects the "graying of America." It has been
estimated that one-quarter of those aged 65 and older live in areas defined as
rural, and that 20% of Americans over age 65 are homebound (Smicklas-Wright,
Lago, Bernardo, and Beard, 1990).While homebound rural seniors represent a
significant subgroup of rural older adults, they are repeatedly ignored in the
gerontological literature.
Homebound
rural elderly are difficult to identify, live in geographically dispersed
communities (often with a limited tax base) with limited access to services, and
face many formidable challenges compared to their urban counterparts. Homebound
rural elderly have been described with terms such as "unknown",
"unsought", "unreached" (Brickner, 1993). It is not
surprising then that rural homebound elderly have been rarely included in
gerontological research.
Adapted
from the Pennsylvania Department of Aging definition, recruitment of homebound
seniors (age 60 and over) for this project was based on meeting one of
the following two criteria:
a)
Self-definition of being homebound based on inability to leave the house without
the assistance of another individual.
b)
A recipient of services delivered at home that may include home delivered meals
or home health services based on assessment of 'need.'
This
project aimed to increase our understanding of the "culture of homebound
rural elderly" by examining the experiences of homebound rural seniors in
three selected counties of Pennsylvania. The first part of this paper will
describe the recruitment challenges as well as approaches employed to access
this "invisible" gerontological population. The second part of this
paper will focus on the seniors’ narrative regarding their homebound
experience.
Recruitment
Challenges
Area
Agencies on Aging
We
began with initial contact established with the respective Area Agencies on
Aging (AAA) that administer home care services to the three counties. These AAA
may be limited to a single county or may extend their boundaries to a
multi-county service area. They may offer a complete range of services to
homebound seniors directly, or may subcontract part or all of the services
offered to this population.
Initial
meetings were held with agency personnel to describe the purpose, and
significance of the project. Their input regarding optimal recruitment strategy
with this population was considered. A subsequent meeting was held with the home
care service staff that had direct contact with the homebound senior. It was
decided that the staff that came in direct contact with homebound seniors would
informally introduce the project, and describe the salience of participation. By
staff introducing the proposed study, the project gained legitimacy in the eyes
of the seniors. These homebound seniors interacted regularly with the home care
staff enough to know them beyond acquaintanceship.
Following
the informal introduction to this proposed project, home care staff distributed
papers describing the project, and inviting the senior to participate in this.
Two handouts were developed in conjunction with project personnel and AAA staff.
One, a fact sheet (large font size) that provided answers to questions that we
anticipated these homebound seniors may have. For instance, " How do I know
that you are not trying to sell me something or that you are real?",
"What are the questions about?" "What is the catch? Where is the
$20 payment coming from?."This fact sheet addressed the above questions by
providing legitimate contact names and telephone numbers of project personnel
and relevant AAA personnel. Assurances regarding confidentiality of responses,
voluntary nature of participation, and presentation of group results was
provided. Two, a second sheet offered seniors an opportunity to participate in
this described project. Seniors were requested to choose one of two options:
decline to participate or agree to be contacted by project personnel. Those who
chose the latter option were further requested to provide their name and contact
telephone number. Home care service staff then arranged for the entire package
of sheets to be forwarded periodically to the research project coordinator. This
was an ongoing process that spanned over a five-month period.
Only
those seniors who confirmed interest in being contacted were considered for
possible inclusion in this study. The
Research Coordinator then followed-up with a telephone call to the senior who
expressed interest in project participation. This provided an opportunity to
further explain the proposed project, answer questions, as well as make
arrangements to schedule an in-home interview. Of nearly 450 sheets that
were circulated, a positive response rate of 33% was initially received for this
rural homebound population. It was clear that alternate strategies had to be
employed to get close to a sample of 200 homebound seniors.
Media
Through press releases from the university campus, publicity for this
project was sought in the local community. Three different newspapers featured
an article regarding the funded project, the salience of participation in this
endeavor, and to ensure that "voices were heard." The published articles
also included contact names and telephone numbers of project personnel. Around
this period, the Principal Investigator also participated in a television
interview as part of a campus promotion program on the local television channel.
This interview was replayed on several occasions. Many homebound seniors spend
several hours watching television. It was learnt later that many of their
television viewing choices are limited to a few channels, and many participants
had made a name-face connection with the Principal Investigator.
Community
Local
churches in these communities were contacted to provide referral names of
homebound seniors known to their congregation. This was also done to ensure that
we could get a sample of homebound seniors who may or may not be serviced by
formal services within the county. On occasion, homebound seniors would provide
names and telephone numbers of other ‘homebound seniors’ that they knew. The
next step was to contact managers of senior housing within the community. They
were briefed about the research project, and permission was sought to post
flyers in high-traffic areas as well as clear visibility within the housing
complex. Further, a letter describing the project was sent to the local sheriff
or chief of police in each county explaining the general purpose of the study,
its' importance, the organization sponsoring the study, the time frame, and
names of project personnel. Such an update was necessary so they could
legitimize the project as well as allay any fears that potential participants
may express to them.
With
these multi-approaches employed, the project team was able to enlist 196
homebound seniors to participate in this study. However, there were further
challenges with conducting the in-home interviews. Since they were homebound
seniors, we expected that they would have great flexibility and large blocks of
time available in their daily schedule. Instead, it turned out that many of them
took long afternoon naps or were very late risers. Also, a significant portion
of their daily schedule featured formal or informal home health care services
that they received. Many of these seniors live in remote, isolated rural
neighborhoods. Several streets had no names posted, and directions provided were
based on unique neighborhood features such as “a particular tree at the
junction”, etc. Consequently, more time was spent in figuring out the location
than had been originally anticipated.
Participants
in this study received either a $20 gift certificate redeemable at a local store
or a check for $20 that was subsequently mailed to them. While this incentive
sparked the interest of some participants, many of them were appreciative of the
plain opportunity to have human contact as well as express their concerns. Many
seniors were so grateful to have a “new visitor” that project personnel
often spent additional time socializing after the research interview.
Emerging
Themes of the Homebound Experience
Sample
The
sample comprised a total of 196 homebound rural seniors from Fayette, Greene and
Schuylkill counties of Pennsylvania. Of the 196 participants in this study, 76%
were female respondents. A majority of the homebound seniors were widowed (54.6%),
while those who reported being married were 24.5% of the population. Nearly 83%
of this population reported an education level of 12 years or below.
Participants were most likely to be living alone (63.1%), followed by living
with spouse (24.1%). Majority of respondents (85.6%) reported an annual income
below $15,000.
The
project interview included four open-ended questions designed to learn more
about how senior respondents felt about being homebound and their views on
formal services. The discussion below focuses on the main themes that emerged
when these responses were analyzed. This was defined as themes when mentioned by
at least five respondents. Minor themes, which were mentioned by fewer than five
respondents, are not discussed.
|
Open-Ended
Questions |
|
1.What
is your experience of being homebound? |
|
2.There
are many services out there for homebound seniors like you. How could
such services be made available so more people can use them? |
|
3.Are
there services out there that you do NOT use? And, why not? What would
it take for you to use these services? |
|
4.If
you could create one program for homebound seniors, what would that be? |
The
first open-ended question was, “What is your experience of being homebound?”
A total of 190 respondents had some type of response to this question. The
fourteen main themes emerging from their responses are shown below. Some
respondents mentioned multiple themes in their responses, while others mentioned
just a single theme.
Many
respondents had very negative views about being homebound. Over one-fourth of
the respondents (28%) said in ways varying from one person to another that they
missed getting out and doing things. Respondents mentioned missing the outdoors,
traveling, driving, and going to church. One-eighth of the respondents (12%)
indicated they were depressed. Some respondents mentioned feeling
“miserable,” “terrible,” or wanting to die. More than one-tenth of the
respondents (11%) said they were lonely. Respondents mentioned feeling cut off
and missing their spouse and friends. One-tenth of respondents (11%) indicated
feeling frustrated or angry about their situation. Seven percent of respondents
said that they missed being independent, while four percent said that being
homebound was a boring existence. One-tenth of respondents (11%) said simply
that they did not like being homebound.
Table
1
Themes
in response to the question, “What is your experience of being homebound?”
|
Main
Themes |
Number
of Respondents Mentioning Theme |
Percent
of Respondents Mentioning Theme |
|
I
miss getting out and doing things |
53 |
28% |
|
I
accept it and I’ve adjusted to it |
35 |
18% |
|
I’m
depressed |
23 |
12% |
|
I’m
lonely |
21 |
11% |
|
It’s
part of life¾what can you do? |
21 |
11% |
|
I
don’t like it |
20 |
11% |
|
I’m
frustrated and angry |
20 |
11% |
|
I
miss being independent |
13 |
7% |
|
Family
members help out |
12 |
6% |
|
I
still get out and do things |
10 |
5% |
|
It’s
boring |
7 |
4% |
|
I’m
happy |
5 |
3% |
|
I’m
thankful it’s not worse |
5 |
3% |
|
I
don’t feel homebound |
5 |
3% |
On
the other hand, more than one-sixth of the respondents (18%) said that they
accepted being homebound and that they have adjusted to it. About one-tenth of
respondents (11%) said that being homebound is part of life, and that nothing
can be done about it. Six percent of respondents indicated that children and
other family members help out by running errands, doing household chores, or
providing emotional support. Five percent of respondents mentioned that they
still get out and do things. Three percent of respondents reported that they
were happy. Another three percent said they were thankful that their situation
was not worse. Three percent also said that they did not really feel homebound.
The
second open-ended question was, “There are many services out there for
homebound seniors like you. How could such services be made available so more
people can use them?” A total of 175 respondents had some type of response to
this question. The seven main themes emerging from their responses are shown
below. Again, some respondents mentioned multiple themes in their responses,
while others mentioned just a single theme.
Nearly
one-half of the respondents (46%) said that the services should be advertised
and that service providers should get the word out. These respondents appeared
to interpret the question as one pertaining to awareness of services rather than
to availability or access. Respondents mentioned advertising through TV, radio,
newspapers, the mail, bulletin boards, and flyers. They also mentioned getting
the word out through senior centers, community centers, the meals-on-wheels
program, doctor’s offices, churches, and word of mouth. In a related theme,
ten percent of respondents said that they or other seniors are not aware of all
the services that exist.
Table
2
Themes
in response to the question, “There are many services out there for homebound
seniors like you.How could such services be made available so more people can
use them?”
|
Main
Themes |
Number
of Respondents Mentioning Theme |
Percent
of Respondents Mentioning Theme |
|
Advertise,
get the word out |
81 |
46% |
|
Not
sure |
34 |
19% |
|
People
aren’t aware of the services that exist |
17 |
10% |
|
Better
transportation |
13 |
7% |
|
People
should call or write to find out more
about available
services |
8 |
5% |
|
I’m
dissatisfied with the services I’ve used |
7 |
4% |
|
I’m
satisfied with the services I’ve used |
6 |
3% |
Seven
percent of respondents said that transportation should be improved. Some
indicated that transportation is not available to them, while others said that
public transportation schedules are limited.
Some
respondents used this question as an opportunity to provide their views on the
quality of services they had used. Four percent said they were dissatisfied with
the services they had used, while three percent said they were satisfied. About
one-fifth of the respondents (19%) were not sure about an answer to this
question.
The
third open-ended question was, “Are there services out there that you do NOT
use? And, why not? What would it take for you to use these services?” A total
of 180 respondents had some type of response to this question. The nine main
themes emerging from their responses are shown below. As before, some
respondents mentioned multiple themes in their responses, while others mentioned
just a single theme.
Table
3
Themes in response to the question, “Are there services out there that you do NOT use?
And,
why not? What would it take for you to use these services?”
|
Main
Themes |
Number
of Respondents Mentioning Theme |
Percent
of Respondents Mentioning Theme |
|
I
have no need or desire for services |
59 |
33% |
|
People
aren’t aware of the services that exist |
31 |
17% |
|
Services
are inconvenient and waiting lists are too
long |
18 |
10% |
|
I
don’t know of any services I don’t already
use |
16 |
9% |
|
Need
transportation |
15 |
8% |
|
I’m
not physically able to use services |
15 |
8% |
|
I
can’t afford services |
6 |
3% |
|
I
use services already |
6 |
3% |
|
Not
sure |
6 |
3% |
One-third
of the respondents (33%) said that they do not have a need or desire for
services. Some respondents indicated that family members take care of their
needs. Others said that they dislike large crowds, do not like to socialize, or
feel that senior centers are dominated by “cliques” and gossiping.
About
one-sixth of the respondents (17%) said that they or other seniors are not aware
of all the services that exist. One-tenth of the respondents (10%) indicated
that services are inconvenient or that waiting lists are too long. With respect
to convenience, respondents complained about inconvenient and inconsistent
pick-up times, having to call a day in advance for transportation, and that
using services is too much trouble.
About
one-tenth of respondents indicated that they did not know of any services out
there that they did not use already. Eight percent of respondents said they
needed transportation in order to make greater use of services.
The
fourth open-ended question was, “If you could create one program for homebound
seniors, what would that be?”A total of 176 respondents had some type of
response to this question. The seven main themes emerging from their responses
are shown below. Although the question asked respondents to name just one
program, some respondents mentioned more than one type of program in their
responses, while others mentioned just a single program.
Table
4
Themes in response to the question, “If you could create
one
program for homebound seniors, what would that be?”
|
Main
Themes |
Number
of Respondents Mentioning Theme |
Percent
of Respondents Mentioning Theme |
|
Visitation
program |
38 |
22% |
|
Social
and recreational activities |
37 |
21% |
|
Don’t
know |
32 |
18% |
|
Help
with housekeeping and errands |
28 |
16% |
|
Better
transportation |
23 |
13% |
|
Religious
activities |
11 |
6% |
|
There’s
no need for any new program |
5 |
3% |
More
than one-fifth of the respondents (22%) said they would create some type of
visitation program. Respondents said that such a program would alleviate
loneliness and boredom, as well as help seniors to keep their minds active. It
would also permit someone to check up on the homebound periodically to see how
they were doing. More than one-fifth of respondents (21%) also said they would
create social or recreational activities programs. Activities mentioned by
respondents included get-togethers, knitting, music, arts and crafts, games, and
trips to the mall. About one-sixth of respondents (18%) did not know what type
of program they would create.
About
one-sixth of respondents (16%) said they would create a program to provide help
with housekeeping and errands. Respondents mentioned that they could use help
with cooking, cleaning, repairs, and snow removal. About one-eighth of
respondents (13%) indicated that they would improve transportation services.
Respondents felt that public transportation should be more convenient and more
frequent.
Six
percent of respondents said they would create some type of religious activities
program. Three percent said that existing programs were sufficient and that
there was no need for any new program.
DISCUSSION
Homebound
seniors in rural communities are a difficult group to identify. It is not
surprising then that very sparse information is available on this group. The
issue of services for the homebound rural elderly is greatly hampered by the
lack of data regarding their needs. In order to be successful in reaching their
goals, programs and services in rural communities should target the needs of
this gerontological population.
Numerous
homebound elderly perceive their situation negatively. This is not surprising
since many studies have shown that rural elders experienced more symptoms of
depression and loneliness (Nyman, Sen, Chan & Commins,1991),higher suicide
rates (U. S.Congress, 1990) and cognitive impairment (Blazer, George, Landerman,
Pennybacker, Melville, Woodbury, Manton, Jordan & Locke,1985)than their
urban counterparts. This may not only reflect isolation experienced in rural
communities but also the continuing emphasis on service recipients as “needy
people. ” Many respondents stressed loneliness, depression, and lack of
mobility as result of being homebound.
Many
of the homebound seniors believe that they are not aware of services that are
available to them. According to Neese & Abraham (1997), even though the need
for services is high among rural seniors, their service utilization rates tend
to be low. The multitude of service providers, with separate organizations
providing care management, home-health services, in-home services, home
delivered meals, and volunteer services appear to foster this perception. It
remained unclear whether respondents were unwilling to comment freely on current
services for fear of losing them or whether they did perceive many of their
needs being met.
If we
are to maintain elderly adults in the community, the challenge from a service
delivery perspective is to provide appropriate services that directly address
their needs. That is, differentially sensitive models of rural service programs
must be developed.As this project suggests, the development of social visitation
programs could improve the quality of life for homebound elderly in rural
isolated communities.As suggested by Eller (1992), it may behoove us to consider
with each rural community the development of a “civic” infrastructure - a
sense of communal social responsibility with intergenerational overtones.Such a
partnership should not only serve the care recipient but also utilize the assets
of the rural homebound individual as a contributing member of the community.
REFERENCES
Blazer,
D., George, L. K., Landerman, R., Pennybacker, M., Melville, M. L., Woodbury, M.,
Manton, K. G., Jordan, K., & Locke, B. Z.(1985).Psychiatric disorders: A
rural/urban comparison. Archives of General Psychiatry, 42, 653-656.
Brickner,
P. W.(1993). Finding the unreached patient. JAMA, 225:1645.
Eller,
R. D.(1986, October). Appalachia: Still waiting for spring. Seeds,
pp12-15.
Neese,
J. B., & Abraham, I. L.(1997). Cluster analysis of psychogeriatric
characteristics and service use among rural elders.Issues in Mental Health
Nursing, 18, 1-18.
Nyman,
J. A, Sen, A., Chan, B. Y., & Commins, P. P.(1991). Urban/rural differences
in home health patients and services.The Gerontologist, 31, 457-466.
Smiciklas-Wright,
H., Lago, D. J., Bernardo, V., & Beard, J.(1989).Nutritional assessment
of Homebound Rural Elderly. Paper presented at the American Institute of
Nutrition Conference in Charleston, SC.
Author
Note: This project was made possible by a grant from the Center for Rural
Pennsylvania, a legislative agency of the Pennsylvania General Assembly.An
earlier version of this paper was presented at the annual meeting of the
Gerontological Society of America in San Francisco, November 1999.We would like
to express our sincere appreciation to Kerry Grimm, Noreen Hobbs, Tesha Honse,
Cynthia Olavsky, and Valarie Washington for their assistance with the research
project.
Address
correspondence to Dr. J. Kalavar,