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ABSTRACT
Clients' and Health Care
Professionals' Perspectives on Post Stroke Rehabilitation
Services in Tehran, Iran
Purpose: Stroke is one of the leading causes
of disability globally with a higher impact in
underdeveloped countries. This study examined
the perspectives of clients and health care professionals
on the availability and effectiveness of outpatient
stroke rehabilitation services in Tehran, Iran.
Methods: Mixed methods including a survey,
key informant interviews and a focus group were
used to investigate the experiences of post stroke
clients (n=30), rehabilitation professionals (n=9)
and physicians (n=2). Data from the survey provided
information regarding the demographic and clinical
characteristics of clients as well as the availability
and perceived effectiveness of stroke rehabilitation
services. Focus group and key informant interviews
with health care professionals were transcribed
and themes were extracted.
Results: Five themes were developed: family
income, availability of rehabilitation centres,
insufficient health coverage, family situation,
and lack of an interdisciplinary approach. Of
the clients surveyed, 67% perceived their rehabilitation
as effective; however, more than half of the clients
identified the availability of services as below
average.
Conclusion: This study highlights a misalignment
regarding supply and demand for stroke rehabilitation.
Given an impending rise in the incidence of stroke,
this signals the need to reconsider policy regarding
access to rehabilitation services as part of a
national health system.
Key words: stroke, rehabilitation services,
Iran
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INTRODUCTION AND BACKGROUND
The Global Burden of Disease
Study indicated that among 135 diseases, cerebrovascular
disease is the second leading cause of death and disability
after ischemic heart disease(1). High levels of disability
are common in post stroke clients with only 10% independent
with their activities of daily living (ADLs), 40% with
mild disability, and 40% with moderate to severe disability,
while 10% become totally dependent (2). Stroke rehabilitation
is an active process beginning in acute hospitalization
care with the eventual goal of returning to the community.
It focuses on assisting clients to gain their functional
independence(3) and to return to an active and productive
lifestyle(4). Although stroke is a global burden, its
impact may be experienced differently in developed and
underdeveloped countries. The shift from rural to urban
lifestyles in developing countries often results in
varying levels of social support, increasingly sedentary
lifestyles, sporadic employment and poverty (5). The
resulting socioeconomic impact increases the risk of
diseases(1).
In Iran, a Middle Eastern, underdeveloped country, there
is no detailed information available on the status,
statistics, or services available for individuals following
a stroke. The most recent statistics available from
a World Health Organization (WHO) report indicated 31,768
deaths from stroke in 2002 (6). A retrospective, descriptive
study showed an incidence rate of 50 cases per 100,000
population with a higher incidence among women, and
a mortality rate of 32 percent. The most common risk
factors were hypertension (54%), heart diseases (43%)
and (24%)(7).
The aims of our study were:
1) To understand the experiences of a group of clients
in Tehran, Iran who were currently receiving or had
received outpatient rehabilitation services, and their
perceptions of the availability and effectiveness of
these services (i.e. physiotherapy (PT), speech language
pathology (SLP), and occupational therapy (OT)).
2) To explore the perspectives of health professionals
regarding the availability and effectiveness of rehabilitation
services for clients after stroke.
METHODOLOGY
This descriptive study was approved by the Research
Ethics Board of the University of Toronto and the Iran
Medical Sciences University (IMSU) in Tehran. This study
applied mixed methods to investigate the experiences
of post stroke clients, rehabilitation professionals
and physicians regarding the availability and perceived
effectiveness of rehabilitation services.
In this method, both qualitative and quantitative data
are collected, analyzed, and "examined" from
different approaches (8). Quantitative data were gathered
from the survey, and qualitative data were gathered
from the focus group, open ended questions in the survey
of the clients, and in-depth interviews with health
care professionals.
Quantitative Data: Survey
Thirty clients were recruited using convenience sampling.
The Iranian collaborator accessed and reviewed the charts
of post stroke clients and generated a list of current
and former clients who fitted the inclusion criteria.
After contacting and informing potential subjects about
the study, she obtained consent to release contact information
from the interested clients and passed it on to the
primary investigator (PI). The eligibility criteria
for post stroke clients are included in Table 1.
| Inclusion
criteria for post stroke clients |
Inclusion
criteria for rehabilitation
professional participants |
- Post stroke
between 6 weeks to 36 months
- First or recurrent stroke
- Had attended or were attending one of the
five outpatient rehabilitation centres affiliated
with the IMSU
- Able to communicate verbally in Farsi
- Ability to comprehend and cognitively understand
the questions
- Able to provide written or verbal consent
|
- Working full
time in one of the five rehabilitation sites
- At least one year's experience working with stroke
patients
- At least 40% of their caseload had to be stroke
population
|
Table 1: Inclusion Criteria
A study survey with 22 pre-coded rating questions and
three open ended questions was administered to the clients
to explore their experiences (Table 2).
| Survey questions |
Areas of
address |
| Questions 1-8
|
Demographic
data |
| Questions 9-13 |
Information
about the clients' strokes and other co-morbid illnesses |
| Questions 14-16 |
Information
about the needs and involvement of family members
as caregivers |
| Questions 17-20 |
Data about
the duration of the clients' stays in inpatient
settings and the types of rehabilitation received
in that period |
| Questions 21-22 |
Data on the
amount and type of rehabilitation services clients
received in an outpatient setting and their satisfaction
with them. A visual analog scale (1-5) was used
to rate questions |
| Questions 23-25 |
Ratings of
the availability and effectiveness of rehabilitation
services in meeting their needs and goals on a scale
of 1-10 |
Table 2: Table of Survey
Questions
Survey data were analyzed using the Statistical Package
for the Social Sciences (SPSS -11) 9. Frequency and
descriptive analysis, including mean, median, range
and standard deviations, were applied to describe all
quantitative data. A t-test was used to examine the
differences between rehabilitation services in outpatient
and inpatient settings.
Qualitative Data: Focus Group/Interviews
Based on the inclusion criteria (Table 1), eight professionals
(two SLPs, three OTs and three PTs) participated in
a focus group, and three others (two neurologists and
one SLP) participated in in-depth interviews. The focus
group assisted with the qualitative exploration and
discovery of insights, provided the context in which
participants operated, generated in-depth data about
matters of importance, and explored reports on how and
why participants provided rehabilitation services 10.
The same interview guide consisting of seven questions
was used for both the focus group and the interviews
(Table 3).
| Survey questions |
Areas of
address |
| Questions 1-2 |
Requested information
about the extent, frequency and determinant factors
for the health care professionals' levels of involvement
with the clients |
| Question 3-6 |
Gathered data
about the perceived availability of rehabilitation
services, the adequacy and effectiveness of those
services and the barriers in offering adequate and
effective services |
| Question 7 |
Sought additional
points that were not discussed in the focus group/interview |
Table 3: Focus Group/Interview
Questions
The qualitative data in this study were analyzed using
the descriptive method [19] with low-interference interpretation.
Questions such as who, what, when, and where were answered
using the qualitative descriptive approach which is
more relevant to practitioners and policy makers 11.
Using content analysis, themes were developed related
to the study objectives and to the key questions asked
in the focus group/interviews. The investigator labeled
ideas or issues within the focus group data as codes
and from these codes larger themes were developed. A
number of strategies such as prolonged engagement, triangulation,
peer debriefing, and member checks were used to enhance
the credibility of the qualitative analysis. The analysis
was based on both the in depth interviews with focus
group participants as well as the open ended questions
from the survey with post stroke clients.
Procedure
Signed consent forms were obtained from all participants,
and all study materials were translated into Farsi by
a certified translator in Tehran. For the health care
professionals, the focus group discussion and key informant
interviews were conducted in Farsi at the rehabilitation
centres. The interviews and focus groups were tape recorded
and transcribed by the research assistant and another
bilingual Iranian individual.
For post stroke clients, the PI administered the survey
at each participant's home or another location decided
upon by the clients. The primary investigator completed
surveys, based on their oral responses, for clients
who were unable to read.
| |
Subjects
(n=30) Mean & SD
(min-max) |
Frequencies
(%) |
| Age (y)
at onset of stroke |
57.5±13(31-81) |
10 (30%) 30-50
20 (70%) >50 |
| Number of
children |
3±2
(0-10) |
|
| Income (CAN$)
per month |
$434 ±
4 ($0-$2000)
Median $300
|
3 (10%) 0 (no
income)
3 (10%) $100 or less
16 (53%) $100-$500
2 (7%) $500-$700
5 (16%) $700-$1000
1 (3%) more than $1000 |
| Time since
stroke (months) |
19 ±10
(3-36)
median: 21
|
|
| Driving
time from home to the rehab setting (minutes) |
65±
87 (5-480)
Median: 38
|
|
| Birth place |
|
Tehran 11 (37%)
Other 19 (63%) |
| Resident |
|
96% reside
in Tehran |
| Work status
(post stroke) |
|
11 (37%) retired
6 (20%) housewives
6 (20%) jobless
3 (10%) disability pension
3 (10%) self employed
1 (3%) working |
| Marital
status |
|
25 (83%) married
5 (17%) unmarried |
| Education:
highest level attained |
|
7 (23%) illiterate
4 (13%) primary
7 (23%) high school
1 (3%) college
5 (17%) undergrad
6 (20%) postgraduate |
| Gender (%
of males) |
|
20 (67%) male |
| Co-morbid
diseases |
|
10 (33%) combination
(high blood pressure, heart disease, diabetes, high
cholesterol)
7 (23%) high blood pressure
6 (20%) none
|
| First stroke |
|
24 (80%) |
Table 4: Demographic and
Clinical Characteristics of Post Stroke Clients at Outpatient
Rehabilitation Centre
RESULTS
In our study, quantitative data were gathered through
pre-coded questions in the survey and the qualitative
data were collected through the clients answering three
open-ended questions, the discussion in the focus group,
and in-depth interviews to obtain the health care professionals'
perspectives. The following data and themes emerged
through the use of triangulation between all qualitative
and quantitative sources. In the following section,
the quantitative data will be presented first, followed
by the qualitative themes.
1) Quantitative results
a) Demographic and Clinical Characteristics (Table 2),
Assistance with ADLs at Home (Table 3)
b) Rehabilitation Services in Outpatient Settings
Table 4 illustrates that private outpatient settings
provided more PT services (18±19 weeks) than
public outpatient settings (12±13 weeks). In
contrast, more OT and SLP services were offered in public
outpatient settings. Only four of 30 clients received
private outpatient OT services; the rest attended public
outpatient centres. Clients reported that they visited
their neurologists on average four times a year (4±2.6),
visits which required payment by the clients.
c) Perception about the Effectiveness
of Rehabilitation Services at Outpatient Centres.
As seen in Table 5, more than
50% of clients indicated that PT and OT services were
effective; only 3% stated that they were not effective
at all. Sixty-six per cent were not referred to SLP
after their stroke; however, from the number of patients
who were referred (n=10), 60% indicated that SLP was
effective. Only 27% of the clients indicated that physicians
were effective in their rehabilitation. The majority
(67%) stated that the rehabilitation services they received
were not adequate to meet their needs, and just over
half (53%) of the clients identified the availability
of rehabilitation services as below average. Most of
them rated the effectiveness of their rehabilitation
services as average or above average. The majority of
clients (73%) reported that they did not achieve their
goals or expectations.
| |
Mean ±
SD
(min-max)
|
Frequency
(%) |
| Assistance
with ADLs at home |
|
22 (73%) require
and receive assistance
7 (23%) do not require assistance |
Assistance
provided by
non-family members
|
|
3 (10% ) attendant
care or friends |
| Assistance
provided: family member |
|
21 (70%) female
caregiver
5 (16%) male caregiver
1 (3%) none |
| Dressing |
|
17 (57%) require
assistance |
| Bathing |
|
20 (67%) require
assistance |
| Personal
hygiene |
|
13 (43%) require
assistance |
| Indoor mobility |
|
10 (33%) require
assistance |
| Cooking |
|
17 (57%) require
assistance |
| Feeding |
|
11 (37%) require
assistance |
| Toileting |
|
8 (27%) require
assistance |
| Assistance
with daily ADLs at home (hours) |
6.5±8.5
(0-24) |
|
Table 5: Assistance with
ADLs at Home
| |
Public Mean±SD
(min-max) |
Private
Mean ± SD (min-max) |
| PT (weeks) |
12 ±
13 (0-48) |
18±19
(0-96) |
| OT (weeks) |
31.5 ±
32.5 (1- 80) |
21±21.5
(2-72) |
| SLP (weeks) |
5.3 ±
12.7 ( 0-50) |
1 ±
3 ( 0-12) |
Table 6: Availability of
Outpatient Rehabilitation Centres
|
Scale |
Median |
Mean ±
SD |
Frequency
(%) |
| Perceived Effectiveness
of PT (n=29) |
1-5 |
3.5 |
4±1 |
15 (51%) scales
4 & 5
1 (3 %) scale 1 |
| Perceived Effectiveness
of OT (n=26) |
1-5 |
4 |
3±2 |
17 (57%) scales
4 & 5
1 (3%) scale 1 |
| Perceived Effectiveness
of SLP (n=10) |
1-5 |
0 |
1±2 |
20 (66%) not
referred
6 (60%) scales 4 & 5 |
| Perceived Effectiveness
of Physicians (n=30) |
1-5 |
2 |
2±1 |
8 (27%) scales
4 & 5
13 (43%) scale 1 |
| Overall effectiveness
of rehabilitation services (n=30) |
1-10 |
8.5 |
8±2 |
26 (97%) >
scale 5 |
| Availability
of rehabilitation services (n=30) |
1-10 |
5 |
5±3 |
16 (47%)
> scale 5 |
| Adequacy of
received rehabilitation services (n=30) |
Yes or No |
|
2±0.5 |
67% (no) |
| Accomplishment
of their expectation(s) (n=30) |
Yes or No |
|
2±0.5 |
22 (73%) did
not accomplish their goals |
Table7: Post stroke Clients'
Perspectives on the Effectiveness of Rehabilitation
Services at Outpatient Rehabilitation Centres
| Quotation
Number |
Quote |
| 1 |
Here [public
rehabilitation centre] we treat a client intensively
and after discharge, we refer a client to a governmental
clinic in Tehran for different disciplines such
as SLP, but due to the distance, transportation,
home situation [stairs] and time, the client and
family decided to attend private therapy. |
| 2 |
There are many
obstacles for stroke clients in using their health
coverage plans for rehabilitation. Physiotherapy
services are the most well-known rehab discipline
in Iran. Most health insurance companies accept
PT expenses, but they make it difficult for clients
to access the coverage easily. For example, each
session in the prescription needs to be written
separately for each part of the body. If the prescription
was written for two parts of the body, the rehabilitation
expenses are not covered. So doctors must write
individually for each type of treatment and modality
in order for it to be covered. These are just some
of the many problems with the health coverage. |
| 3 |
Poverty is
a problem. I do not have health insurance coverage
and the public centres are short term. The private
centres are expensive and I cannot afford them.
For public centres, my family has a transportation
problem. It is difficult and expensive to take me
to rehabilitation centres. |
| 4 |
When a client
has a stroke, he/she is usually hospitalized for
two weeks. When the client returns home, the family
routine falls apart and they get angry at each other
and they lose their normal style of life. |
| 5 |
In Iran, physicians
who are the first staff to deal with stroke clients,
do not tell them if they need PT or OT because if
clients went to rehab, they would recover sooner.
The person who should refer the client first is
looking for money and has his own agenda. So, physicians
keep clients in the hospital longer to charge them
more. After staying in the hospital for a long time,
when the client does not improve, that is the time
when physicians refer the clients to us. |
Table 8: Quotation Numbers
The qualitative analysis which follows supports the
quantitative findings; health care professionals also
indicated that the post stroke clients did not have
adequate access to effective and available rehabilitation
services.
2) Qualitative Results: Barriers
to the Availability of Rehabilitation Services in Tehran
Five major factors influenced the accessibility of rehabilitation
services in Tehran. These factors were:
1) family income;
2) availability of rehabilitation centres, including:
a) geographical inaccessibility of public rehabilitation
centres and
b) lack of continuity in rehabilitation services;
3) insufficient health coverage;
4) family situation, including: a lack of client and
family knowledge about the existence of rehabilitation
services and each rehabilitation discipline's role,
and
5) lack of an interdisciplinary approach, including:
lack of knowledge among rehabilitation and medical members
about having an interdisciplinary approach and an atmosphere
of competition among medical and rehabilitation professionals.
Quotations by focus group participants and clients are
presented to illustrate the key themes. The participants'
names were replaced with pseudonyms and clients were
referred to by numbers.
Theme 1: Family Income
A family's financial status is perceived as a leading
factor in accessing rehabilitation services. As attested
to by both professionals and clients, an affluent family
has greater access to these services.
Theme 2: Availability of
Rehabilitation Centres
a) Geographical Distance
In Tehran, the public rehabilitation centres are often
geographically distant from clients' residences, especially
from poor families. According to Ahmed (PT), this is
a situation that often influenced poor clients to choose
private rehabilitation centres because they were cheaper
when factors such as time off work and cab fare were
considered. See quote #1(Table 8).
b) Breaks in the Continuity of Rehabilitation Services.
The public rehabilitation centres that are affiliated
with one of the medical universities are dependent on
a student work force and can only provide services according
to the school calendar rather than the ongoing needs
of their clients.
Theme 3: The need for more comprehensive health coverage
Even those who could afford insurance could not always
access rehabilitation services as public hospitals accepted
only one of the two major plans and were selective in
the services covered. See quote #2 (Table 8).
Lower socioeconomic status and not having the requisite
insurance are the major issues in accessing rehabilitation
services. These problems further impeded a client's
access to effective rehabilitation so the client and
the health care professionals felt that all of the insurance
plans needed to cover a complete range of services for
the required time. See quote #3 (Table 8).
Theme 4: Client and Family Knowledge about Rehabilitation
Services
The rehabilitation professionals stated that the most
important factor was the family and client's knowledge
about the existence of rehabilitation and the value
they placed on it as the means of regaining function.
See quote #4 (Table 8).
Theme 5: Need for an Interdisciplinary
Approach
An interdisciplinary approach has been identified as
the most effective practice to manage rehabilitation
after stroke (12). Our analysis indicated that Iranian
health care professionals and physicians were aware
of the need for a team approach, but it was not currently
available; this was an issue that clients felt affected
their recovery. Physicians were the first to work with
clients and families after stroke. They could play a
major role in creating an interdisciplinary practice,
but they tended to keep their clients and did not refer
them in a timely manner to rehabilitation services.
See quote #5 (Table 8).
DISCUSSION
To our knowledge, this is the first study to investigate
the accessibility and perceived effectiveness of rehabilitation
services in Iran. Even though all post stroke clients
included in this study felt that the rehabilitation
services that were available were effective, many identified
major barriers such as poverty to accessing such services.
The clients felt that they had not achieved their goals
due to poor access and still needed more rehabilitation
interventions to decrease the burden on their families
(e.g. for ADLs). The direct connection between poverty
and access to effective rehabilitation services was
reinforced by both clients and the rehabilitation team.
Poor families were assisted mainly by their children
who were taught some therapeutic techniques that could
be carried out at home. It is important to note that
the sample for this study was drawn from the more affluent
areas of Tehran where the median income for post stroke
clients was $ 434 per month, but the majority of the
population lives in poor areas.
Other factors may also have impacted on economic status.
Urbanization may have added to the impoverishment of
a majority of Iranians 13. In this study, 63% of post
stroke clients were not born in Tehran, an industrialized
city; rather they had migrated from small towns or villages.
Literacy is another important factor with a negative
impact on the economic situation and potentially on
stroke outcome (14); it can affect the awareness and
knowledge of post stroke clients concerning the prevention
of secondary stroke and the modification of risk factors
such as diet, physical activities, and lifestyle. In
this study, the literacy rate among post stroke clients
was 23%, higher than in the general Iranian population
(13%) (15).
After being discharged from acute inpatient hospitals,
there were no community based
services to support the clients and/or their families.
It was the family's responsibility to take the client
home and provide the necessary care. A majority of post
stroke clients in this study reported that a family
member was their sole caregiver, providing an average
of 6.5 hours of assistance with ADLs per day; in many
cases, 24 hour care by the family member was required.
The rehabilitation professionals also reinforced the
importance of the family in dealing with various challenges
resulting from a stroke. The families had to allocate
money for rehabilitation sessions and specialists' fees,
give time and energy to assist the post stroke client
at home, learn skills and knowledge about different
rehabilitation techniques to be applied at home, and
take the client to his or her rehabilitation treatment
sessions.
Iran's health care is a public system and free at the
entry point, but people who can afford it attend private
hospitals which offer rehabilitation services. A poorer
client could also access these services if the private
hospital was closer to their home, or public rehabilitation
services were not available. Iran does not utilize any
guidelines for stroke management resulting in rehabilitation
professionals and physicians treating each client in
isolation without the benefit of a team approach. As
a result, health care professionals felt a lack of efficacy
in their rehabilitation intervention.
Limitations and Future Direction
Data were collected from one group of health care professionals
and from one group of clients. This study was conducted
in only one of three medical universities in Tehran.
Due to the small sampling method and sample size of
this study, the generalization of the findings may be
limited. In addition, this research was a hospital based
study; as such, it does not account for community based
services.
Further studies to examine the cost effectiveness and
clinical efficacy of different service delivery models
for post stroke clients could be an effective step in
improving access to necessary rehabilitation services.
Iran is not alone in attempting to increase access,
but given poverty rates, it is indeed a daunting task.
As a general understanding of rehabilitation accessibility
needs evolves in Iran, it may act as a catalyst towards
an agreed upon national guideline to drive better access.
Conclusion
Based on the hospitals where this study was conducted,
there appears to be a lack of consistency in the stroke
rehabilitation services offered in Iran with poverty
an underlying factor in accessing effective rehabilitation.
Although the effectiveness of the team approach in stroke
management has been demonstrated and encouraged, it
has not yet been adopted among Iranian rehabilitation
professionals and physicians. As the Iranian population
is aging, the incidence rate of stroke is likely to
increase so the lack of a team approach will negatively
impact recovery. Underdeveloped countries such as Iran
could be brought to global health standards by considering
the areas of improvement that resulted from this study.
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