Naerly Every Grant Proposal End With a Discussion of How Ne Program or Innovation Will Be ed

7/31/2019 Naerly Every Grant Proposal End With a Discussion of How Ne Program or Innovation Will Be ed

1/10

DEVELOPMENT AND DISSEMINATION OF ARE ARTHRITIS PATIENT

EDUCATION COURSES

Nearly every grant proposal end with a discussion of how needs program or

innovation will be disseminated. Most program, however, are created fordissemination not the widely used. This paper documents the development,

implementation, and national dissemination of the Arthritis self-management (ASM)

course.

BACKGROUND

The National Arthritis Act (PL 93-64) was passed by congress in 1973 with major

objective being to demonstrated and stimulate the promt pt and effectiveapplication of available knowledge for the treatment of patient with arthritis are

related musculosketel disease. Multipurpose Arhritis Center (MAC)s one

mecahanism for accomplishing this objective; the stanford Arhritis Center at the

Stanford School of Medicine was funded as one of the early MAC.

In keeping with the congresinal mandate, Stanford proposed to develop an effective

low-cost arthritis Patien education program that would be easily replicable. A patients

needs assess ment was conducted using salient belief methodology. This

methodology asks patient waht thing come to mind when they think about arthritis.

Miller and Fishbein and Ajzen have suggested that the first item beliefs. The primary

concern identified were pain, disability, fear, and depresion. Deformity was distant

fifth.

Based on this assessment, a literature review, and advice of professionals working in

the field, the 12 hour community based ASM course was develop. It has several

attributes that differentiate it from patien education and at the same faciliate its

dissemination.

ASM is Comunnity based

Since most people with arthritis live inthe community and are seldom hospitalized, it

seemed appropriate to center bthe program in community. The six 2 hour classesare held in senior centers. Churches, mobile home parks, libararies, shooping


2/10


3/10

Such programs as Alcoholics Anymous, Reach To Recovery (a program for

mastectomy patients), and Mended Hearst all rely on lay instructors to model

successful living with various chronic disease.

ASM materials simple and inexpensive

There are no audiovisual materials used in the ASM course except a 20-page flip

chart that is made by each leader. In addition, every course participant receives a

copy of THE Arthritis Helpbook, which was specifically developed for the course and

contains all the course content. By giving the book to participant, there is assurance

that they take away standardized content and have a readily available source forinforcement.

Many leaders have wanted to use fils, slides, or demonstrate self-help aids and

devices. This is highly discouraged, as deviation from the course curriculum means

other material is not covered, there is no quality control, on giving is being

substituted for skill building.

In addition, the use of films or similar media limit large scale dissemination. In manyplaces, 20 or more course being given simultaneously. If each needed a film

projector, screen, and darkened room, the logistics would soon become

unmanageable and very expensive. Today, when the ASM course has become

widely disseminated, adding even one page of material means making and

distributing more than 10,000 copies a year. Something that easy in a hospital or

single-site setting becomes almost impossible in a widely disseminated program.

ASM is carefully evaluated

Probably the most important attribute of the ASM course that contributed to its

dissemination was, its initial evaluation. Study participants were recruited by public

service announcements in newspapers and on radio and TV. After applying for the

course, all subject were randomized to either the immediate ASM course or to the

course scheduled to be held 4 months later. Everyone filled out a lengthy selfadministered questionnaire at baseline, and again 4, 8, and 20 months later. In


4/10

california, approximately 75 % of the participants have osteoarthritis, 15 % have

rheumatoid arthritis, and 10 % have other forms of arthritis. The average age is 64

years. The initial evalution involved 300 subjects. When compared to controls, ASM

course participants demonstrated increased knowledge and frequency pratice of

exercise and relaxation. Their pain-decreased by 15 % to 20 %. Using analysis of

covariance and controlling for baseline status, all findings were ( P < . 05). These

cahanges deteriorated over time but reamined statistically significant for the full 20

months of the study. The same findings have been replicated in additional 400

participants.

THE DISSEMINATION PROCESS

The arthritis Foundation (AF) is a voluntary charitable oraganization founded in 1948

to assist patients with arthritis and to support arthritis research. In early 1981, a new

group vice-president for education joined the AF and toured the country, becoming

acquinted with arthritis education programs. At that time, there was no standardrized

national arthritis education program ; each chapter conducted education at it wished.

One of this officers stops was Stanford University where he was taken to senior center to watch the new phenomenon of lay-led community-based arthritis classes.

Shortly thereafter, the Standford Arthritis Center was asked to train some AF

volunteers and staff to teach the ASM course and, more important, to train other to

teach it. This was both an exciting and lrigthtening opportunity. It was one thing to

run a carefully controlled experiment in Northern California and quite another to have

the course taught by strangers in cities thousands of miles away. Before training AF

volunteers and staff, agreements were/reached on two points. First, the coursewould not be altered without permission of its origininators and, second, an

evaluation would be done in the pilot dissemination sites.

In the summer of 1981, 25 AF staff and volunteers came stanford for a week of

intensive training. The trainees represented 22 AF chapters and included two

regional vice-presidents and three national staff members.

Beacuse there was some resistence among arthritis health care prefessionals tohaving lay patients educators care was taken to diffuse this issue. One of the


5/10

trainees was immediate past president of the Arthritis Health Professionals

Assosiation (AHPA). She was well respected and was a strong supporter of the ASM

concept. The current president of APHA was also a trainee. In addition, a health

educator who had done her field work at stanford and had later started a successful

ASM program in phoenix was part of stanford summer training staff. An AF staff

person from phoenix was one of the tarinees. Thus, key gatekeepers involved as

both staff and trainees were ready to lend support to the program during the initial

training. The importance of such opinion leaders for the successful difflusion of

innovation has been recongnized by both Merton and Rogers.

Any new innovation meets resisttance ; this occured during the 1981 training in two

forms. First, there were several trainees who were resistant because they had notparticipated in the creation of the ASM course. In medical circles, this resistance is

a ptly named the NIH sydrome : Not i nvented Here.

The second major problem was the anticipated resistance to use of lay leaders.

While this was couchead in terms of participant safety, it was clear that the real issue

was professional territoriality. Thus, nurse thought lay people could teach everything

but medications, physical therapists felt lay people could teacheverything but

exercise, and occupational therapists (Ots) felt that only Ots should teach joint

protection.

However, the resistance was generally mild, and time was allotted in the tarining for

a full discussion. Also, the training process allowed for a turning over of power from

the Standford group to the AF. A simply but highly symbolic action representing this

change of power was a name change from the ASM course to the Arthritis Self-Help

(ASH) course. By the end of training, all trainees agreed to go back their respective

chapters and give an ASH course. Following this, they were to train 10 to 20 people

in their area to also give the course. Finally, all course participants were to receive

pretest and posttest evaluations that were to be sent to satndford for analyses.

These evaluations were a shorttened version of those used in the initial study. The

measured knowledge, behavior, disability, pain, health care utilization, and patient

satisfaction with medical care.


6/10

RESULTS

By December 1981, 18 of the 25 trainees had give at least one ASH course with little

professional resistance and strong public acceptance. It was a this point that the

ASH course took one life of its own. Almost everywhere the course was given, initialpublic demand outstripped local chapters ability to give course.

From the beginning, Standford had urged a slow,planned dissemination with careful

evaluation. While the AF agree with this plan, 15 to 20 local chapter were eager to

have new visible program and demanded to be added to those offering the ASH

course.

When data arrived from the initila trainees, it became obvious that data collectionwas a low priority. Although each chapter was supllied with question naires and a

written protocol, data collection at the best was spotty. In some cases only pretest

and posttests were collected but only full sets of data (from persons) given both

pretests and posttest were sent to stanford. Thus, it was imposible to calcute a drop

out rate. Despithese problems, data were received from 276 ASH participants in 18

chapters Analysis showed results similar to but weaker than those of original

stanford study.

In spring of 1982, the AF patier. Services Committe, which was charge with

overseeing the ASH course, decided to undertake a second evaluation. Again

pretest/ posttestdesign was used. This time, the study subject were ASH participans

in course taught by leaders trained by the 1981 summer trainees. The last step in

the separation from the original site had been completed. This time, more care was

taken with data collection, although problems still existed. With 239 subjects in 12

cities. The results werte again encourning. Participants had significans increases inknowledge, the pratice of exercise and relaxation, and a decrease in pain.

During the latter part of 1982 and early in 1983, the demand for the ASH course

continued to grow. The problem was that only those people trained in the 1981 was

qualified to train eaders and their resources were stretched to the limit. At this time,

the AF wrote a series of course content and process but also the way in which it was

administered. In addition, the trained several group of leaders to become trainers for

leaders.


7/10

One of the voriginal ASH site was phildelphia. Beacuse of local enthuasiasm for the

course, the pennysylvania state Health Departement decided to offer the course.

Thus, in the spring 1983, health departement staff from throughout the state were

tarained as leaders. The course was also being offered in other sites from Walter

reed Army Hospital in washington, DC, to kaiser foundation Hospital in southern

California. ,ost, but not all, of these course were offered in conjuction with local AF

chapters.

As demand for the course grew so did media attention. Which in turn created more

demand. Stanford assisted National Public Television in producing five-minute self-

help segments for over Easy, a daily program for senior. After each segment,

viewers were urged to contactan AF, post office box for information. The initialsegement drew thousands of requests. Other media from To Day Show, to parade

magazine, to the national Engquirer featured program. By the end of 1985,

approximately 15.000 people from more than 70 cities had attended course. In

addition, the course had been started in both New Zealand and Australia.

However, a major concern continued to be evaluation. In many ways, the proverbial

cat was already out bag. It was to late to study the dissemination process. In 1983,

after a long search, fund were secured for the long-awaited randomized study in five

sites. Again, there were problems. Most AF chapters refused to participate because

they felt that the randomization process would anger controls and hurt the bpositive

image created for the chapter by the coarse. Chapters and other organizations

persisted in this argument even after experience had shown that (1) controls were

seldom angry and (2) participants were than willing to fill out the lenghty

questionnaires. In all, it look nearly 18 months to enroll all five sites ; even then only

three of the five sites were truly randomized: (1) chicago, (2),cincinati, (3)portland,oregon. In cleveland, a study involving inner city participants used a wait-list control

design. In Salt Lake City, a pretest/ posttest design was used.

Surprisingly, data collection has been easy, with fewer dropouts and better

completion rates than in the northern california studies. The problems feared by

chapters have not arisen. Data collection for this study will be completed in early

1986.


8/10

In 1984, the AF received a grant from the office on aging to disseminate the ASH

course as well as other AF programs through local agencies on aging. This grant

also has a component to evaluated the effect of not only the ASH course but also an

arthritis water exercise program. Thus, two evaluation efforts are currently underway.

LESSON LEARNED

Keep it inexpensive

Probably nothing made the ASH course more acceptable to both AF chapters and

the public than its low cost. Actual course expenses vary from $15 to $30 per person

depending on administrative cost and whether or not leaders are paid.

This means that most course cost can be recovered by student fees or grants from

local organizations. In various parts of the country such organizations as local fhealth

departemens, community colleges, or businesses have helped pay for the course.

The general policy is charge $10 to $20 per student, with easily acailable

scholarships for those who need them.

No dissemination without evaluation.

Possibly the biggest mistake made in the beginning was not inssisting on a

randomized evaluation as part of the first phase of dissemination. Unfortunately,

many health innovations are disseminated without any real evidence of eifica.

In this case, it seems a bit risky to base natiotional program on evidence from 300

example. Unforunately, once a program is deminated takes on its own political

..bla3...Efficacy may longer be the most important consideration. For example,

..bla3..studies have shown that new carefully patients do as well at home as in

..bla3..intensive care units. However, because of legal other considerration as these

studies have never been located in the United States, nor have..bla3..patients in the

United States ..bla3..cared for the at home.

Bla3...the case of the ASH courses, evaluation has become difficult because AF

..bla3.. use the courses to create a public ..bla3..that they fear may be damaged by


9/10

..bla3..In their view, a happy public ..bla3.. important than proving the effectivenees

of the innovation.

Management is imporatant

Post patient education corses are defined as to content. However, ...bla3...the

process carefully written. Taught is never given to administrated. For example, it is

relatively easy..bla3..20 courses in a 100 mile area but much more to give 1.000

courses throuhtout the country. The AF has written a complete administrative

manual the ASH course, with details from running a publicity campaign to selecting

leaders. In fact, the documentation for the ASH course grown from one leaderssmanual and The Arthritis help-Book to a complete library including (1) a leader

training manual, (2) an administrative manual, and (3) a set preprinted courses flip

charts. In addition, AF has started a periodic newsletter to keep contact with all ASH

leaders. This careful documentation and communication system has helped maintain

standardization and quality.

Consider organizational and client needs

The ASH course filled a large gap in AF programming . Although AF was the national

organization for people with Arthritis, it had little offer beyond brochures. Thus, it

welcomed a program which (1) gave visibilty, (2) provided service, (3) created a

volunteer pool, and(4) increased the number of potential donors. At the same time,

the program provided little of no deviation from the original organizational mission

and used a minimum of organizational resources.

The American cancer Society (ACS) provides another example of how a voluntaryhealth agency reated to a successful health education innovation. In the late 1970,

the California Division of the ACS funded a pilot program to increase the pratice of

breast self-examination (BSE) among spanish-speaking women. The

program,culdaremos (which translates we take care ourselves) used opinion leader

and trigger film to disseminate BSE to spanish-speaking women. It was highly

succesful in recuiting spanish speaking volunteers, increasing the pratice BSE, and

activating spanish-speaking women. However, after the garant period, the programdied because it did not meets oraganizational needs. For exemple, it required


10/10

specialized bilingual staff. While it increased demands on the ACS, there was an

equal potential for lund raising. In addition, the program rased many ethical and

racial questions. The different fates of the ASH and culdaremos program illustrate

the importance of organizational goals and political climate in the dissemination of

patien education programs.

.......................................................................................................................................

..........................

This paper has presented a history of one patient education program. One thing

learned is that dissemination must be planned from the inception of a program. First,

a good program may never be disseminated if is does not have an easily replicable

design. Second, dissemination is as dependent on political climate as it is on

program design. Finally, the reason for the acceptance or rejection of an innovation

may have little to do with the original reasons for creating the innovation.

Childbirth education: a review of effects on the woman and her family

THE DECADE of the 1960 brought about many changes directly affected the waymen and women participated in the birth and their babies. Women began to deamnd

information about pregenancy and labor and delivery. They were no longer content

to reamain ignorant and helpless in the face of an extremely demanding physical and

psychologic event in their lives. I hese women wanted to be awake and aware during

childbirth process and wanted their husband present to provide them with emotional

and psycologic support. Prior to the late 1950 and in the early 1960, analgesic anad

anesthetic drugs were given in large amounts to women and often prevented

couples from being aware and participating in childbirth. These vdrugs were provided

primarily to modify the pain associated with childbirth: however, they also infered

with.

Documents

Naerly Every Grant Proposal End With a Discussion of How Ne Program or Innovation Will Be ed