Schizophrenia: Public Attitudes, Personal Needs
Research and Data Findings
REPORT
©2008, Harris Interactive Inc.
April 25, 2008
All rights reserved.
Conducted for the National Alliance on Mental Illness
www.harrisinteractive.com

Background & Objectives……………………………………………………………………………….
4

Methodology….............................................................................................................................
5

Highlights of Detailed Findings..................................................................................................
7

Detailed Findings………………………………………………………………………………………… 15

General Health & Awareness.......................................................................................................
Health status….........................................................................................................................
Familiarity with Medical Conditions...........................................................................................
Concern About Medical Conditions…………………………………………………………………..
Knowing Others with Medical Conditions…………………………………………………………....
Relationship to Person Diagnosed with Schizophrenia…………………………………………….
Caregiver Status………………………………………………………………………………………..
Schizophrenia Treatment……………………………………………………………………………...
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23

General Knowledge About Schizophrenia…………………………………………………………...
Prevalence of Schizophrenia vs. Other Conditions………………………………………………....
Perceived Symptoms of Schizophrenia………………………………………………………………
Views about Schizophrenia……………………………………………………………………………
Schizophrenia Recovery……………………………………………………………………………….
Perceptions of Schizophrenia and Disclosure……………………………………………………….
Comfort Around People Diagnosed with Schizophrenia............................................................
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Table of Contents
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Living with Schizophrenia...........................................................................................................
Age at First Symptoms, Diagnosis, and Treatment…………………………………………………
Openness About Schizophrenia Diagnosis………………………………………………………….
Different Treatment Since Diagnosis…………………………………………………………………
Positive and Negative Experiences…………………………………………………………………..
Reliability of Various People…………………………………………………………………………..
Types of Assistance Accepted………………………………………………………………………..
Engagement in Activities After Diagnosis……………………………………………………………
Helpfulness in Improving Condition…………………………………………………………………..
What People Living with Schizophrenia Want Others to Know……………………………………
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Caregivers………………………………………………………………………………………………….
Relationship to Person Cared For……………………………………………………………………
Living Situation of the Caregiver and Person Living with Schizophrenia…………………………
Time Spent Providing Care……………………………………………………………………………
Types of Assistance Provided………………………………………………………………………...
Helpfulness in Improving Condition…………………………………………………………………..
Usage & Satisfaction with Caregiving Related Services……………………………………………
Challenges Faced……………………………………………………………………………………...
Attitudes About Caregiving…………………………………………………………………………….
Availability of Support………………………………………………………………………………….
Sources of Caregiving Support……………………………………………………………………….
Perceptions of Public Knowledge About Schizophrenia……………………………………………
Emotions Experienced…………………………………………………………………………………
Openness About Caregiving…………………………………………………………………………..
What Caregivers Want Others to Know………………………………………………………………
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46
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Demographics…………………………………………………………………………………………….. 59
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Table of Contents (con’t)
3
Background & Objectives
 The National Alliance on Mental Illness (NAMI) commissioned Harris
Interactive to conduct research to measure attitudes and awareness of
schizophrenia among members of the general adult public, as well as
among caregivers and individuals who self report that they have been
diagnosed with schizophrenia.
 Specifically, this research seeks to:
– Identify gaps in knowledge and understanding among the general adult public
– Establish a baseline of attitudes toward the illness and those living with it
– Understand the experiences of caregivers and individuals living with
schizophrenia
 The results of this study will be used by NAMI to help raise awareness
about schizophrenia with the goal of reducing the stigma associated with
this condition and improve the care available to those living with it.
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– Identify areas where more or better services are needed for those living with
schizophrenia
4
Methodology
 The general adult public portion of this research was conducted from
February 13 –February 19, 2008, by Harris Interactive via its Harris Poll
Online Research Panel, a database that consists of several million people
who have agreed to participate in online research projects.
 The portions of the research among caregivers and people living with
schizophrenia were conducted online between February 11 – February 25,
2008, via NAMI email lists.
 A total of 1,012 HPOL respondents (adults), 256 caregivers and 258
people living with schizophrenia qualified and completed the survey. The
survey averaged about 17 minutes.
 Data for the caregivers and individuals living with schizophrenia were not
weighted.
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 For the general adult public, demographic weighting was used to ensure
that the data represent the national population of adult U.S. citizens.
Propensity score weighting adjusted for respondents’ propensity to be
online.
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Notes for reading this report
 Throughout this report, the terms “general public” or “adults” refer to
members of the general adult public, by which we mean U.S. residents,
aged 18 and older.
 The term “caregivers” refers to U.S. adults, aged 18 and older who either
currently provide care, or who provided care in the past, for someone who
has been diagnosed with schizophrenia, schizoaffective disorder, or
another schizophrenia spectrum disorder. This does not include anyone
providing care in a professional capacity.
 In the caregiver section, “person cared for” and refers to the person to
whom caregivers provide care.
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 The term “people living with schizophrenia” refers to U.S. adults, aged 18
and older who self-report that they have been diagnosed with
schizophrenia, schizoaffective disorder, or another schizophrenia spectrum
disorder.
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Highlights of Detailed Findings
Awareness Among the General Public
 Compared to other medical conditions, familiarity with schizophrenia is very low among the
general public. Not surprisingly, caregivers and people living with schizophrenia report
much greater familiarity with this condition.
– One-quarter of the U.S. adult population (24%) report that they are very or extremely familiar with
schizophrenia (Q515).
– Of the eleven conditions included in the survey, only Multiple Sclerosis (21%) and Lou Gehrig’s disease (13%)
received lower familiarity ratings (Q515).
– As would be expected, familiarity with schizophrenia was much higher among caregivers and people living
with schizophrenia, with 89% of caregivers and 93% of people living with schizophrenia saying they are
extremely or very familiar with the condition (Q515).
– Interestingly, not only were caregivers and people living with schizophrenia more familiar with schizophrenia
than the general adult population, but they were also much more familiar with the other mental health
conditions we tested which included, bipolar disorder and depression (Q515).
 74% of caregivers and 81% of people living with schizophrenia are very or extremely familiar with
bipolar disorder vs. 30% of the general public.
 87% of caregivers and 92% of people living with schizophrenia are very or extremely familiar with
depression vs. 52% of the general public.
– Caregivers report the most concern about being diagnosed with schizophrenia (97% rate the concern they
would feel at least 8 on a scale from 1 to 10 vs. 81% of people living with schizophrenia and just 60% of the
general adult population) (Q517).
– Although familiarity with Lou Gehrig’s disease is lower than any other medical condition, it is also among the
top 3 conditions that adults are most concerned about (Q517).
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 While familiarity with schizophrenia is low, the level of concern respondents would feel if
diagnosed with the condition is relatively high—it is the highest rated non-terminal illness.
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Highlights of Detailed Findings
Awareness Among the General Public (cont’d)
 Adults lack knowledge about schizophrenia, in terms of both general information and
symptoms.
– While most adults recognize that delusions (80%) and hallucinations (79%) are symptoms of
schizophrenia, this is much lower than the percentage of caregivers who believe these are symptoms
(97% for delusions and 100% for hallucinations) (Q710).
– Additionally, nearly two-thirds (64%) of adults incorrectly believe that split or multiple personalities is a
symptom of schizophrenia (Q710). In fact, over half (55%) believe that split personality disorder is another
name for schizophrenia. This is compared to 12% of caregivers (Q720).
– Members of the general adult public are also less likely to identify cognitive symptoms of schizophrenia
(problems organizing thoughts—62%; disorganized speech—35%; difficulty learning—30%) than
caregivers (problems organizing thoughts—97%; disorganized speech—82%; difficulty learning—60%)
(Q710).
– While more than half (57%) of adults agree that the suicide rate among people with schizophrenia is ten
times higher than the general population, they do not associate that people diagnosed with schizophrenia
die 25 years younger than others (24%) (Q720).
 Despite a low level of knowledge about schizophrenia, a large majority of adults share
positive attitudes towards individuals with this condition on some important points.
 Nearly as many (79%) agree that most people diagnosed with schizophrenia can lead independent lives
with ongoing care (Q710).
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 More than eight in ten (85%) people in the general public recognize that schizophrenia is an illness that
requires proper medical attention.
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Highlights of Detailed Findings
Awareness Among the General Public (cont’d)
 A small but significant percentage of adults (21%) say they know someone living with
schizophrenia, or have been diagnosed themselves.
– Among those who know someone who has been diagnosed with schizophrenia, 3% say they have
personally been diagnosed with this condition (Q610). This is approximately 1% of all adults surveyed and
seems to be in keeping with other reported estimates on the prevalence of this condition.
– Among those who have been diagnosed with schizophrenia, most are currently receiving treatment (93%
among those in the general adult public sample who identified that they were diagnosed with
schizophrenia and 95% among the sample targeted to people living with schizophrenia) (Q620).
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– Further, among those who know someone who has been diagnosed with schizophrenia, 19% report that
they have cared for someone with schizophrenia, either currently or in the past (Q615).
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Highlights of Detailed Findings
Attitudes toward People Living with Schizophrenia
 While adults tend to report sympathetic views toward people living with schizophrenia,
they also acknowledge being uncomfortable around people with schizophrenia.
– Although eight in ten (79%) adults say they would want a friend to tell them if they were diagnosed with
schizophrenia, less than half (46%) would tell friends if they were diagnosed (Q725).
 Additionally, one-quarter (26%) would be embarrassed to tell others if a family member was
diagnosed with the condition.
– Half of U.S. adults (49%) would feel uncomfortable dating someone who has been diagnosed with
schizophrenia who is receiving treatment and one-third (34%) would feel uncomfortable working for such a
person (Q730).
 Discomfort around individuals living with schizophrenia increases dramatically when
thinking about a person who has been diagnosed with schizophrenia and has not
received treatment (Q735).
– 80% of adults would feel uncomfortable dating someone who had not received treatment, and the same
number would feel uncomfortable working for such a person .
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– Seven in ten adults (71%) would be afraid for their safety around someone who was diagnosed with
schizophrenia and had not received treatment (Q735).
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Highlights of Detailed Findings
Experiences and Attitudes of People Living with Schizophrenia

Individuals living with schizophrenia have a mix of positive and negative experiences in their lives, and
this is reflected with how open they are about their condition.
– Half of people living with schizophrenia (49%) say that people they know encourage their recovery often or always, and more
than half (60%) say that people are rarely or never afraid to be left alone with them (Q830).
– Less positively, 44% of individuals living with schizophrenia say that people they know often or always avoid the topic of their
illness, and one-third (34%) say people they know often or always treat them as though they lack intelligence.

While the majority of people living with schizophrenia feel they have not been treated differently by
children, people at their place of worship, friends, neighbors, spouses/significant others, and
coworkers, many report being treated either better or worse by these people (Q810).
– People living with schizophrenia are most likely to say they have been treated better by parents (34%) and doctors and health
care professionals (32%). They are most likely to say they have been treated worse by police and correctional officers (39%)
and employers (38%) (Q810).
– This is reflected in that 86% say they have been at least somewhat open with their parents about their condition and 97% have
been at least somewhat open with doctors and health care professionals. Conversely, this percentage is just 36% for police
officers and 39% for employers (Q805).

Despite a hesitance to open up about their condition around people at their place of worship, religion
seems to be an important part of life for many people living with schizophrenia.
– While people living with schizophrenia are more likely to report being treated better by people at their place of worship than
worse, nearly one-third (30%) say they are not at all open with this group of people about their condition (Q805, Q810).
– Volunteering is the only other activity that people living with schizophrenia are more likely to have increased than decreased
engagement with since being diagnosed with schizophrenia, with one-third (34%) saying they increased engagement and 32%
reporting decreased engagement (Q840).
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– Despite this lack of openness, religion appears to play an increased role in the lives of people living with schizophrenia after
they are diagnosed. Nearly four in ten (38%) say they have increased their level of engagement with religious or spiritual
practices since being diagnosed (Q840).
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Highlights of Detailed Findings
Experiences and Attitudes of Caregivers
 Access to support for caregiving is very important to those who provide care for people
living with schizophrenia, and the vast majority of caregivers have accessed some form
of support.
– 90% of caregivers say they benefit from sharing their experiences with others who have similar caregiving
responsibilities (Q940).
– However, just one in five (19%) feel they always have someone or some place to contact when they need
help (Q985).
 The vast majority of caregivers have opened up to someone in their lives about their
caregiving responsibilities, most often friends or extended family.
– 98% of caregivers have opened up to at least one other person, with 89% saying they have talked to
friends and 79% saying they have talked to family (Q945).
– Those who don’t talk about their caregiving with others cite the wishes of the person they care for (34%),
that people would look down on that person (33%) or people’s lack of understanding (32%) as their main
reasons (Q950).
– Nearly all caregivers (95%) say that the general public knows nothing at all or not very much about
schizophrenia, and 96% believe it is important that they educate others about the illness (Q955, Q940).
– Most caregivers (91%) also don’t believe that the media portrays the illness accurately, which is likely a
reason for the public’s lack of knowledge (Q940).
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 Caregivers report a lack of knowledge and understanding about schizophrenia among
the general public, a belief which has received significant support in this survey.
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Highlights of Detailed Findings
Experiences and Attitudes of Caregivers (cont’d)
 Caregivers face many challenges in caring for their loved ones, in terms of both making
sure the person they care for has what they need, as well as in taking care of themselves.
– Almost all caregivers have faced challenges caring for loved ones. Only 2% of caregivers say they have
not faced challenges (Q980).
– The top challenges cited involve accessing services for the person they care(d) for, in terms of
determining how to access those services (82%) and finding specialized services (79%) (Q980).
– Additionally, many caregivers have been dissatisfied with the services their loved one has received. Eight
in ten (80%) caregivers say they are dissatisfied with available work programs, 74% are dissatisfied with
social and community services, and 69% are dissatisfied with their loved one’s private health insurance
(Q995).
– Finding personal time is also a big challenge among caregivers, with 63% reporting this and 57% reporting
time management as a challenge (Q980).
 Not surprisingly, most caregivers have turned to NAMI for support for their caregiving.
– It should be noted that all caregivers surveyed were asked to participate in this study by the National
Alliance on Mental Illness, with which they had a preexisting relationship.
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– Eight in ten caregivers (79%) have turned to NAMI for support, while slightly smaller, but still significant,
percentages have turned to family (71%), friends (56%), or support groups (52%) (Q935).
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Highlights of Detailed Findings
Mental Health Care for People Living with Schizophrenia
 Both people living with schizophrenia and caregivers show a strong reliance on mental health
care for both treatment and support for schizophrenia.
– Eight in ten people living with schizophrenia (82%) say they know they can rely on their mental health provider
when needed. This is more than say they know they can rely on their parents and family (72%) or friends (67%)
(Q845).
– The types of assistance that receives the highest ratings in terms of helpfulness in recovery among people living
with schizophrenia are all related to mental health care (Q843).
 Access to medications/treatment received a 9.1 on a scale from 1 to 10, followed by access to a psychiatrist
(8.9) and more effective medications and treatment (8.6).
 The same trend is seen among caregivers, who rate more effective medications and treatment at 9.3,
access to medication and treatment at 8.9, and access to a psychiatrist at 8.9.
– Interestingly, while drugs and alcohol are often thought to be common problems among people living with
schizophrenia, integrated mental health and drug/alcohol treatment receives the lowest rating among both people
living with schizophrenia (4.4) and caregivers (6.2) (Q843).
 As hypothesized, there seems to be a delay between experiencing symptoms of schizophrenia,
being diagnosed with schizophrenia, and receiving treatment for schizophrenia.
– Among caregivers reporting for the person they care(d) for, the mean age for diagnosis is 22.8, several years
before what people living with schizophrenia in the sample report (Q1015).
 This could be explained when considering that 68% of caregivers report that the person they care for is their
child. It is likely that the caregivers were present when symptoms first surfaced and were proactive in
seeking diagnosis and treatment.
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– Among people living with schizophrenia, the mean age for experiencing the first symptoms is 20.5, for receiving
any mental health diagnosis is 24.5, receiving a schizophrenia diagnosis is 28.9, and for receiving treatment for
schizophrenia is 29.0 (Q860, Q861, Q862, Q863).
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Detailed Findings
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General Health Status & Awareness
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Health Status. Caregivers rate their physical health higher than other adults,
while people living with schizophrenia rate their physical and mental health lower than
the general adult population.
Physical Health
45%
Excellent/Very Good (Net)
General Pop:
37%
Caregivers:
56%
People living
with Schizophrenia:
20%
42%
36%
34%
35%
28%
16%
9%
13%
9%
14%
9%
7%
2% 1%
Poor
Fair
Good
Very Good
Fair/Poor (Net)
General Pop:
Caregivers:
People living
with Schizophrenia :
19%
10%
44%
Excellent
Mental Health
33%34%
24%
24%
15%
14%
12%
Excellent/Very Good (Net)
General Pop:
Caregivers:
People living
with Schizophrenia:
39%
34%
14%
8%
4%
1% 1%
Poor
General Pop
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Fair
Caregivers
Good
Very Good
Fair/Poor (Net)
General Pop:
Caregivers:
People living
with Schizophrenia :
58%
53%
17%
19%
13%
58%
Excellent
People Living with Schizophrenia
BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256;
People Living with Schizophrenia N=258)
Q505. How would you describe your physical health overall?
Q510. How would you describe your mental health overall?
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43%
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Familiarity with Medical Conditions. Caregivers and people living with
schizophrenia report much higher familiarity with mental health conditions than the
general population. With the exception of heart disease, familiarity is similar across
groups with regard to physical health conditions.
% Extremely/Very Familiar
24%
Schizophrenia
89%
52%
Depression
30%
Bipolar Disorder
74%
92%
81%
52%
54%
54%
Diabetes
High Blood Pressure
54%
Cancer
50%
61%
59%
56%
58%
46%
43%
45%
Asthma
46%
Heart Disease
45%
32%
21%
21%
19%
Multiple Sclerosis
13%
12%
12%
59%
38%
43%
General Pop
Caregivers
People Living with Schizophrenia
BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256;
People Living with Schizophrenia N=258)
Q515. Based on what you have seen, read, or heard, how familiar are you with the
following health conditions?
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HIV/AIDS
Lou Gehrig's Disease
87%
93%
18
Concern About Medical Conditions. Caregivers report higher levels of concern
about schizophrenia than any other condition. Additionally, both people living with
schizophrenia and caregivers rate their level of concern about other mental health conditions
higher than the general public.
HIV/AIDS
Lou Gehrig's
Disease
Multiple
Sclerosis
11% 9%
95%
77%
16% 7%
92%
8%
13% 5%
92%
7%
21%
46%
40%
65%
Heart Disease
33%
39%
45%
37%
26%
10%
47%
46%
17%
28%
28%
39%
51%
35%
30%
Very Concerned
43%
54%
54%
Concerned
10% 9%
85%
19%
57%
6%
81%
14%
71%
11%
14%
89%
80%
6%
21%
81%
85%
14%
29%
50%
Diabetes
Asthma
81%
70%
Bipolar
Disorder
High Blood
Pressure
97%
28%
82%
Cancer
Depression
12%
60%
Schizophrenia
People Living with
Schizophrenia
Caregivers
11%
69%
22%
8%
68%
26%
7%
73%
5%
63%
6%
61%
11%
16%
42%
33%
20% 7%
30%
28%
45%
48%
7%
11%
13%
19%
Not Concerned
BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256;
People Living with Schizophrenia N=258) Q517. Please rate the level of concern
you would feel if you were living with each of the following conditions, where 1
indicates you would be not at all concerned about that diagnosis and 10 indicates
you would be extremely concerned about that diagnosis.
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General Public
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Knowing Others with Medical Conditions. Caregivers and people living with
schizophrenia are much more likely than the general public to have known someone who has
depression or bipolar disorder. For each condition, caregivers are most likely to know
someone who has that condition.
83%
High Blood Pressure
82%
Diabetes
80%
96%
87%
72%
Asthma
77%
67%
Heart Disease
88%
85%
69%
64%
Depression
43%
Bipolar Disorder
39%
Multiple Sclerosis
94%
98%
89%
98%
64%
38%
25%
HIV/AIDS
43%
34%
13%
13%
23%
100%
100%
General Public
Caregivers
People Living with Schizophrenia
BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256;
People Living with Schizophrenia N=258)
Q605. Have you ever been diagnosed or have you ever known anyone who was
diagnosed with any of the following health conditions?
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21%
Schizophrenia
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93%
88%
Cancer
Lou Gehrig's Disease
97%
90%
20
Relationship to Person Diagnosed with Schizophrenia. Among
those who know someone living with schizophrenia, members of the general public
are most likely to know a family member, friend, or classmate.
Extended family member
14%
Friend or classmate
14%
22%
21%
21%
32%
19%
Immediate family member
94%
12%
Coworker
Acquaintance
Neighbor
Friend's relative
I have schizophrenia
Decline to answer
Other mentions
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10%
5%
3%
5%
7%
5%
5%
1%
2%
3%
3%
2%
3%
100%
5%
3%
4%
6%
General Pop
Caregivers
People Living with Schizophrenia
BASE: KNOW SOMEONE DIAGNOSED WITH SCHIZOPHRENIA (General Population N=218;
Caregivers N=256; People Living with Schizophrenia N=258)
Q610. Whom do you know that has been diagnosed with schizophrenia, schizoaffective disorder,
or other schizophrenia spectrum disorders? Please select all that apply.
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Clients/consumers
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Caregiver Status.
About one in five members of the general public that report
knowing someone diagnosed with schizophrenia have also provided care for someone
living with schizophrenia, either currently or in the past. In the caregiver sample,
about two-thirds are currently providing this care.
Caregivers
General Public
4% of all adults
report having
provided care for
someone
diagnosed with 16%
schizophrenia.
31%
4%
81%
Yes, I currently provide care
Yes, in the past, but I do not currently provide care
No, I have never provided this care
BASE: KNOW SOMEONE DIAGNOSED WITH SCHIZOPHRENIA OTHER THAN SELF
(General Population N=218; Caregivers N=256)
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Q615. Have you ever cared for a person diagnosed with schizophrenia, schizoaffective
disorder or other schizophrenia spectrum disorders? This does not include any care
provided as part of a professional or formal volunteer experience.
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69%
22
Schizophrenia Treatment. Nearly all people living with schizophrenia who
responded to the survey are currently receiving treatment.
95%
Yes
No
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (General
Population N=6; People Living with Schizophrenia N=258)
Q620. Are you currently being treated for schizophrenia, schizoaffective disorder
or other schizophrenia spectrum disorders?
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5%
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General Knowledge About
Schizophrenia
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Prevalence of Schizophrenia vs. Other Conditions. All three groups
generally agree on how common various conditions are compared to schizophrenia.
People Living with
Schizophrenia
High Blood
Pressure
74%
19% 7%
Diabetes
74%
20% 6%
74%
20% 6%
69%
Heart Disease
73%
21% 6%
73%
20% 7%
68%
21%
12%
10%
67%
22%
10%
14% 9%
69%
21% 10%
Cancer
70%
22%
7%
Asthma
70%
24%
6%
62%
Depression
HIV/AIDS
55%
Multiple
Sclerosis
44%
Bipolar
Disorder
44%
Lou Gehrig's
Disease
33%
29%
37%
16%
18%
8%
47%
34%
33%
27%
63%
76%
8%
29%
24%
70%
21%
46%
32%
Less common
11%
57%
About the same
17% 8%
23%
63%
26%
57%
42%
49%
43%
5%
34%
20%
38%
75%
13% 7%
80%
21%
41%
27%
45%
7%
29%
11%
23%
31%
44%
21%
9%
11%
50%
More common
BASE: ALL QUALIFIED RESPONDENTS (Gen Pop N=1012; Caregivers N=256;
People Living with Schizophrenia N=258)
Q705. Do you think that schizophrenia is more or less common in the U.S. than
each of the following medical conditions?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Caregivers
General Public
25
Perceived Symptoms of Schizophrenia.
Both the general public and
caregivers have several misperceptions about symptoms related to schizophrenia.
Among these misperceptions, nearly two-thirds of adults believe that split or multiple
personalities is a symptom of schizophrenia; one in five caregivers also believe this.
80%
Delusions
79%
Hallucinations
Split or multiple personalities
100%
64%
20%
Problems organizing thoughts
62%
Withdrawing from others
61%
Violent behavior
60%
50%
55%
Not knowing that you're ill
97%
95%
90%
50%
Panic attacks
58%
41%
Insomnia
75%
35%
Disorganized speech
82%
30%
Difficulty learning
60%
50%
23%
Alcohol abuse
46%
General Pop
Caregivers
12%
0%
BASE: ALL WHO HAVE NOT BEEN DIAGNOSED WITH SCHIZOPHREINA
(Gen Pop N=1012; Caregivers N=256)
Q710. Which of the following do you think are symptoms or schizophrenia? Please
select all that apply.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
24%
Illegal or illicit drug abuse
None/Not sure
97%
26
Views about Schizophrenia.
Caregivers are less likely to have misperceptions
about schizophrenia than the general public, half of whom believe that schizophrenia is
the same as split personality disorder.
% Strongly/Somewhat Agree
85%
Schizophrenia is an illness
96%
57%
The suicide rate is over 10x higher
among people with schizophrenia
78%
55%
Schizophrenia runs in families
86%
53%
Split personality disorder =
schizophrenia
12%
48%
There is no single proven cause
80%
30%
Use of illegal drugs increases your
risk
43%
24%
People with schizophrenia die 25
years sooner than others
Poor people are at higher risk
Poor parenting is a cause
8%
1%
8%
5%
7%
5%
General Pop
Caregivers
BASE: ALL WHO HAVE NOT BEEN DIAGNOSED WITH SCHIZOPHREINA
RESPONDENTS (Gen Pop N=1012; Caregivers N=256)
Q720. People have many different views toward schizophrenia. For the following
statements, please indicate whether you agree or disagree.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Schizophrenia = mental retardation.
55%
27
Schizophrenia Recovery. Nearly eight in ten members of the general public
believe that while those living with schizophrenia need ongoing care, they can lead
independent lives. Two thirds believe that schizophrenia cannot be cured.
Can people diagnosed with schizophrenia
lead independent lives?
Can people diagnosed with
schizophrenia be cured?
15%
1%
33%
5%
67%
79%
Not sure
Most people need ongoing care and need to live in hospitals
Most people need ongoing care, but can live independently
BASE: ALL GEN POP RESPONDENTS (N=1012)
Q723. Which of the following comes closest to
your own opinion?
HARRIS INTERACTIVE
BASE: ALL GEN POP RESPONDENTS (N=1012)
Q740. Do you believe someone living with schizophrenia
can be cured?
©2008, Harris Interactive Inc.
Yes
No
Most people recover
28
Perceptions of Schizophrenia and Disclosure. While eight in ten Americans
would want a friend to tell them if they were diagnosed with schizophrenia, less than half say
they would tell their friends if they themselves were diagnosed, and over one quarter of
Americans would be embarrassed to tell others if someone in their family was diagnosed
with this condition.
% Strongly/Somewhat Agree
If a friend was diagnosed with schizophrenia, I would want
them to tell me.
79%
Schizophrenia can be managed but not cured.
73%
I would tell my friends if I had been treated for
schizophrenia.
46%
I would be embarassed to tell others if someone in my
family was diagnosed with schizophrenia.
People diagnosed with schizophrenia did something to
cause their condition.
9%
6%
BASE: ALL GEN POP RESPONDENTS (N=1012)
Q725. Please indicate how strongly you agree or disagree with the following
statements.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Schizophrenia is not a medical condition.
27%
29
Comfort Around People Diagnosed with Schizophrenia. In general,
respondents would be much more comfortable interacting with people who have
received treatment than those who have not.
% Strongly/Somewhat Agree
People diagnosed with schizophrenia can do most
anything others can do if …
19%
79%
80%
I would feel uncomfortable dating…
49%
80%
I would feel uncomfortable working for…
34%
I would feel uncomfortable working with…
77%
24%
76%
I would be afraid for my safety around…
23%
71%
21%
Someone who has not received treatment for schizophrenia
Someone who has received treatment for schizophrenia
BASE: ALL GEN POP RESPONDENTS (N=1012)
Q730. Please indicate how strongly you agree or disagree with the following
statements about people who are treated for schizophrenia.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
I would feel uncomfortable around...
Q735. Please indicate how strongly you agree or disagree with the following
statements about people with schizophrenia who have not received
treatment.
30
©2008, Harris Interactive Inc.
Living with Schizophrenia
HARRIS INTERACTIVE
31
Age at First Symptoms, Diagnosis, and Treatment. There is an average
delay of 8.5 years between the onset of symptoms and the beginning of treatment for
schizophrenia.
Mental health
diagnosis of any kind
24.5 years old
First symptoms
20.5 years old
Diagnosed with Started
schizophrenia treatment
28.9 years old 29.0 years old
18
19
20
21
22
23
24
25
26
27
28
29
30
31
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q860 At what age did you start to experience symptoms of schizophrenia?
Q861 At what age did you receive a mental health diagnosis of any kind?
Q862 At what age were you diagnosed with schizophrenia?
Q863 At what age did you receive treatment for schizophrenia?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Average Delay
Between
Symptoms and
Treatment
8.5 years
32
Age at First Symptoms, Diagnosis, and Treatment. Males report
experiencing symptoms, diagnoses, and treatment about two and a half years earlier than
females.
First
symptoms
19.0 years old
Mental health
diagnosis of any kind
23.6 years old
Diagnosed with Started
schizophrenia treatment
27.9 years old 27.9 years old
Average Delay
Between Symptoms
and Treatment
8.9 years
Males
First
symptoms
21.8 years old
Mental health
diagnosis of any kind
25.1 years old
Diagnosed with Started
schizophrenia treatment
29.9 years old 30.1 years old
Females
18
19
20
21
22
23
24
25
26
27
28
29
30
31
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q860 At what age did you start to experience symptoms of schizophrenia?
Q861 At what age did you receive a mental health diagnosis of any kind?
Q862 At what age were you diagnosed with schizophrenia?
Q863 At what age did you receive treatment for schizophrenia?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Average Delay
Between Symptoms
and Treatment
8.3 years
33
Openness About Schizophrenia Diagnosis. People living with schizophrenia
are most open about their illness with doctors, parents, friends and extended family. Males
and females tend to be more open with slightly different groups of people.
% At Least Somewhat Open
97%
98%
96%
Doctors / health care
86%
Parents
82%
86%
85%
86%
Friends
78%
Extended Family
73%
Spouse / Significant other
48%
36%
60%
45%
39%
Employer
48%
32%
39%
People at your place of worship
HARRIS INTERACTIVE
55%
35%
36%
25%
28%
33%
37%
44%
50%
All People Living with Schizophrenia
Males Living with Schizophrenia
Females Living with Schizophrenia
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q805. How open have you been with the following people about being living
with schizophrenia?
©2008, Harris Interactive Inc.
40%
Coworkers
Children
84%
40%
41%
39%
Neighbors
Police officers / corrections
91%
34
Different Treatment Since Diagnosis.
People living with schizophrenia are most
likely to be treated worse by police officers and people at their place of work. They are most
likely to be treated better by parents and doctors.
38%
Employer
Coworkers
30%
Neighbors
28%
Doctors / Healthcare
45%
35%
Extended family
21%
Parents
20%
20%
15%
57%
44%
32%
60%
19%
45%
34%
62%
Spouse / Significant other
18%
57%
People at your place of worship
18%
60%
0%
13%
49%
19%
Children
18%
52%
24%
Friends
29%
32%
39%
20%
Treated Worse
40%
19%
25%
22%
60%
Not Treated Differently
80%
100%
Treated Better
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA AND ARE OPEN
WITH PEOPLE (N=Dependent on Q805)
Q810. Do you feel you are treated better or worse by the following people after you
tell them you have been diagnosed with schizophrenia?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Police officers / Corrections
35
Positive and Negative Experiences. People living with schizophrenia have
experienced a mix of positive and negative reactions by others since being diagnosed. Most
commonly, people have encouraged their recovery or avoided the topic of their illness.
% Ever
Experienced
Avoided the topic of my illness
13%
36%
33%
10%
Treated me as though I lack intelligence 7%
34%
Showed admiration for me 5%
21%
Took an interest in my illness or condition 6%
18%
Males living with
schizophrenia are
much more likely to
report being
dropped by a
friend (57% vs.
48% of females).
30%
Was afraid to be left alone around me 5% 9%
Always
22%
25%
Often
9%
20%
28%
20%
43%
6% 15%
20%
26%
36%
Dropped me as a friend 4% 18%
Appeared very confused or embarassed
24%
41%
Made negative comments about schizophrenia 4% 19%
14%
18%
30%
5%
17%
34%
30%
13%
24%
31%
Sometimes
5%
11% 9%
36%
27%
Confided in me about their own challenges or those of
4%
a friend or relative
16%
30%
29%
Rarely
95%
91%
85%
86%
80%
91%
80%
72%
87%
71%
Never
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q830. How often have you experienced the following since being diagnosed with
schizophrenia?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Encouraged my recovery
36
Reliability of Various People. People living with schizophrenia are more
likely to say they can rely on their mental health care provider than on their parents or
friends.
% At Least Somewhat Open
82%
I know I can rely on my mental health care provider to help
me when I need it
90%
76%
72%
75%
70%
I know I can rely on my parents, siblings, or extended family
to help me when I need it
67%
68%
65%
I know I can rely on my friends to help me when I need it
54%
53%
56%
People I relied on became distant after they learned I'd been
diagnosed with schizophrenia
I know I can rely on my spouse or significant other to help
me when I need it
It is more difficult for me to get access to physical health
care once someone finds out I was diagnosed with
schizophrenia
49%
42%
55%
45%
43%
46%
39%
34%
44%
All People Living with Schizophrenia
Males Living with Schizophrenia
Females Living with Schizophrenia
HARRIS INTERACTIVE
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q845. Please indicate the extent to which you agree or disagree with the following
statements.
©2008, Harris Interactive Inc.
Doctors take my medical problems less seriously once they
know I have been diagnosed with schizophrenia
37
Types of Assistance Accepted.
Most people living with schizophrenia have
accepted some kind of assistance since being diagnosed with schizophrenia, most
commonly in the form of financial support.
15%
85%
Accepted Assistance
None of these
Money or financial support
63%
Transportation
56%
Housing
50%
Help with household chores
(including laundry or
cleaning)
43%
Medication monitoring
42%
Assistance managing
money
36%
Meal preparation
35%
Child care
9%
Males living with
schizophrenia are
more likely to accept
money (69% vs. 58%
of females),
transportation (66%
vs. 47% of females) and
housing (55% vs. 42%
of females).
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q837. As an adult, which one of the following types of assistance have you
accepted from family members or friends since being diagnosed with
schizophrenia? Please select all that apply.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Type of Assistance
People Living
with
Schizophrenia
38
Engagement in Activities After Diagnosis. Unlike most other activities,
people living with schizophrenia are more likely to say they have increased
engagement in religious/spiritual practices and volunteering than that they have
decreased.
62%
51% of males
living with
schizophrenia are
much more likely
to report a
decrease of
engagement in job
searching (vs.
41% of females).
59% of people
living with
schizophrenia
under 35 years
old report a
decrease of
engagement in job
searching.
Exercising
53%
Participating in community
life
52%
Housework and daily
household activities
47%
Job searching
45%
Performing my job duties
12%
21%
32%
17%
Alcohol/illegal drug abuse
32%
15%
30%
25%
Decreased
No difference
28%
34%
17%
12%
40%
38%
Increased
2%
16%
16%
19%
3%
23%
21%
17%
34%
6%
16%
32%
41%
3%
22%
34%
18%
4%
20%
20%
Volunteering
Religious or spiritual practices
15%
24%
43%
Family participation
School/education
18%
11%
Does not apply
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q840. Since being diagnosed with schizophrenia, has your level of engagement
increased or decreased in the following areas?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Dating/socializing with others
39
Helpfulness in Improving Condition. Access to medications and treatment is rated
highest by people living with schizophrenia in helping to improve their condition, followed by
access to a psychiatrist.
Means
Access to medication / treatment
96%
4%
9.1
Access to a psychiatrist
95%
5%
8.9
Access to crisis care
93%
7%
8.6
92%
8%
8.4
85%
Better private health insurance
15%
7.9
Access to housing
88%
12%
7.8
Integrated medical care for other conditions
88%
12%
7.8
83%
Access to a hospital bed
17%
85%
Access to peer support groups
15%
7.3
7.2
Holding / having a job
76%
24%
6.9
Assertive community treatment
77%
23%
6.8
Access to a care manager
76%
24%
6.5
72%
Transportation
Integrated treatment for alcohol or drug abuse
28%
48%
52%
Total Helpful
HARRIS INTERACTIVE
6.3
4.4
Least Helpful
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q843. Please review the following and rate each item on a scale of 1 to 10, where
1 indicates it would be the least helpful in managing or improving your condition
and 10 indicates it would be the most helpful in managing or improving your
condition.
©2008, Harris Interactive Inc.
More effective medications / treatment
40
Helpfulness in Improving Condition. Males and females have slightly
different views of what is helpful in improving their condition, with females more likely
to give higher ratings of helpfulness overall.
% Giving a Rating of 8-10
89%
90%
Access to medication / treatment
87%
84%
Access to a psychiatrist
More effective medications / treatment
77%
Access to crisis care
77%
59%
68%
69%
Access to housing
Integrated medical care for other conditions
72%
61%
Access to a hospital bed
67%
56%
Access to peer support groups
63%
49%
53%
58%
Assertive community treatment
49%
Access to a case manager
47%
58%
55%
48%
46%
Transportation
26%
30%
Females Living with Schizophrenia
Males Living with Schizophrenia
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q843. Please review the following and rate each item on a scale of 1 to 10, where 1 indicates
it would be the least helpful in managing or improving your condition and 10 indicates it would
be the most helpful in managing or improving your condition.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Holding / having a job
Integrated treatment for alcohol or drug abuse
82%
66%
Better private health insurance
84%
41
What People Living with Schizophrenia Want Others to Know
About their Experiences.
Selected Verbatims
24%
Importance of
support
General
mentions
HARRIS INTERACTIVE
“Having a strong support group of friends and family is
extremely important.”
21%
Understanding
the illness
Lack of social
acceptance
“I think the most important thing is to accept the
disorder like any other medical disorder, that treatment
works and that recovery is not only possible, but
probable as well.”
“People need to stop watching TV and thinking they
know what people who have schizophrenia are like. TV
is not real and we do not all act the way the media
portrays us.”
11%
“After I was diagnosed people started treating me with
fear and distain, if I told them my diagnosis. I miss
normal human contact with people that I can confide in
about my medical problems.”
3%
67%
“People can be successful in life with being diagnosed
with a schizoaffective disorder. I've gradually from
college and have become a CPA since being
diagnosed.”
BASE: ALL RESPONDENTS LIVING WITH SCHIZOPHRENIA (N=258)
Q890. What do you think is the most important thing to share about your
experience with schizophrenia?
©2008, Harris Interactive Inc.
Treatment
issues
42
©2008, Harris Interactive Inc.
Caregivers
HARRIS INTERACTIVE
43
Relationship to Person Cared For. People living with schizophrenia for
whom caregivers provide care are nearly all currently diagnosed with schizophrenia.
Over two-thirds are the children or step-children of caregivers.
Relationship to Person Diagnosed with
Schizophrenia
Child / step-child
68%
Sibling / stepsibling
93%
7%
Yes
No
12%
Spouse /
signficant other
7%
Parent /
grandparent
7%
Extended family
2%
Patient
2%
Client
1%
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q905. Please indicate your relationship to the person diagnosed with schizophrenia
whom you cared for most recently.
Q910. Is your (person cared for) currently diagnosed with schizophrenia?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Is the person you care for currently
diagnosed with schizophrenia?
44
Living Situation of the Caregiver and Person Living with
Schizophrenia. About one-third of caregivers currently live with the person they provide
care for, and the majority of those who live in the same household do so because of their loved
one’s illness.
Do you live together due to
schizophrenia?
Where does the person
you care for live?
3%
9%
2%
1%
5%
2%
Yes
59%
14%
32%
31%
With me
Independently, by him/herself or with a roommate
In supported housing facilities/group home
With family members, but not with me
In a hospital or other mental health institution
In jail or prison
He/she is deceased
Other
My (person cared for) is homeless
HARRIS INTERACTIVE
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q925. Where does your (person cared for) currently live?
BASE: LIVES WITH PERSON CARED FOR (N=81)
Q930. Did you decide to live in the same household as your (person cared for)
because he/she was diagnosed with schizophrenia?
©2008, Harris Interactive Inc.
No
41%
45
Time Spent Providing Care. About four in ten caregivers say they have provided
care for someone living with schizophrenia for more than ten years. About one in five
spending more than forty hours each week providing care.
Number of Years
Providing Care
Number of Hours Per Week
Providing Care
(Mean=13.1)
(Mean=17.2)
11%
16%
15%
16%
15%
11%
41%
7%
12%
5%
10%
3 years or less
8-10 years
Not sure/ Decline to answer
4-7 years
More than 10 years
Less than 1 hour
3-5 hours
11-20 hours
31-40 hours
19%
1-2 hours
6-10 hours
21-30 hours
More than 40 hours
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q915. For how long have you cared/did you car for your (person cared for)?
Q920. On average, about how many hours per week do/did you spend caring for
your( person cared for)?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
22%
46
Types of Assistance Provided. The vast majority of caregivers have provided
assistance to the person they care for, most commonly in the form of financial support or
transportation.
Type of Assistance
4%
96%
80%
Transportation
78%
Assistance managing
money
75%
Housing
75%
Medication monitoring
68%
Meal preparation
66%
Help with household
chores (including
laundry or cleaning)
65%
Child care
8%
None of these
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q932. As an adult, which one of the following types of assistance have you
offered your (person cared for) while being treated for schizophrenia? Please
select all that apply.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Provided Assistance
Money or financial
support
47
Helpfulness in Improving Condition. Similar to people living with schizophrenia,
caregivers report that more effective mediations and treatment would be most helpful in
improving the condition of the person they care for. Integrated drug and alcohol abuse
treatment receives the lowest average rating by caregivers as well.
Means
96%
7%
9.3
95%
5%
9.0
Access to medication / treatment
95%
5%
8.9
Access to a psychiatrist
95%
5%
8.9
Assertive community treatment
94%
6%
8.7
8%
8.3
Access to crisis care
92%
Integrated medical care for other conditions
Access to a hospital bed
90%
10%
8.2
Access to a care manager
91%
9%
8.2
Better private health insurance
87%
13%
8.1
Access to housing
88%
12%
8.0
Access to peer support groups
93%
8.0
Holding / having a job
80%
20%
7.0
Transportation
80%
20%
6.8
Respite care for care givers
71%
19%
6.8
Integrated treatment for alcohol or drug abuse
68%
Total Helpful
HARRIS INTERACTIVE
7%
32%
6.2
Least Helpful
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q986. Please review the following list and rate each item on a scale of 1 to 10, where 1
indicates it would be/ would have been the least helpful in managing or improving your
(person cared for)’s condition and 10 indicates it would be/would have been the most helpful
in managing or improving your (person cared for)’s condition. Please answer these as they
relate to the services and supports for your (person cared for).
©2008, Harris Interactive Inc.
More effective medications / treatment
48
Usage & Satisfaction with Caregiving Related Services.
Caregivers report
higher levels of satisfaction with services for themselves than with services for the person they
care for. Medications are the most commonly used service.
% Very/Somewhat Satisfied
with Each Service
% Using Each Service
62%
94%
Medications
89%
Mental health care
66%
Em ergency care
59%
Education about schizophrenia
55%
Physical health care
50%
30%
42%
38%
46%
Social and com m unity services
42%
26%
Support groups
41%
34%
39%
Private insurance coverage
27%
Assertive com m unity treatm ent
31%
32%
Exercise and nutritional support
21%
45%
Work program s
21%
20%
None of these
1%
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q990. Which of the following services and treatments have you or your (person
cared for) had access to or used to help manage your (person cared for)’s
schizophrenia? Please select all that apply.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
65%
Support groups
Services for
People Living
with
Schizophrenia
72%
77%
Education about schizophrenia
Services for
Caregivers
49
Challenges Faced. The overwhelming majority of caregivers have faced some
challenges in providing care, most commonly in determining how to access health
care services and in finding specialized services for the person they care for.
Determ ining how to access services for m y
(person cared for) w ithin the health care system
82%
Finding specialized services for m y (person
cared for)
79%
63%
Finding tim e for m yself
57%
Managing m y tim e effectively
55%
Finding tim e to take care of m y ow n health
Feeling taken advantage of by m y (person cared
for)
84% of caregivers who have
provided care for more than 5
years report finding
specialized services as a
challenge.
51%
46%
Making ends m eet financially
39%
Maintaining contact w ith friends
88% of those who have
provided care for more than 5
years report determining how
to access services is a
challenge.
None of these
2%
I do not face any challenges
2%
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q980. Which of the following challenges have you faced when trying to provide
care for your (person cared for)? Please select all that apply.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
35%
Maintaining a job
50
Attitudes About Caregiving.
Caregivers have both positive and negative
attitudes about caregiving.
68%
72%
I worry about what will happen to my (person cared for)
I benefit from sharing my experiences with others
59%
I appreciate my experiences
28%
Most people are open to learning more 3%
I feel guilty because my (person cared for) was diagnosed
I feel embarrassed or ashamed of my (person cared for) 2%
26%
17%
I resent my (person cared for) 4% 14%
The media portrays sufferers accurately 3%6%
Agree Strongly
19%
13%
21%
Agree Somewhat
8%
2%
11%
11%
43%
37%
30%
12%
5%4%
18%
14%
36%
9%
18%
16%
39%
15%
I feel fearful of my (person cared for)
I feel as though my (person cared for) doesn't try hard enough
32%
32%
3%
1%
31%
41%
Advances in care give me hope for my (person cared for)
28%
24%
23%
38%
15%
47%
62%
69%
70%
Disagree Somewhat
Disagree Strongly
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q940 Please indicate how much you agree or disagree with the following
statements about caring for someone with schizophrenia.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
It is important for me to educate others
51
Availability of Support. About three in four caregivers feel they have someone
or some place to turn to when they need support, however, just one in five feel they
have this support all of the time.
19%
Yes (Net): 74%.
Those who have provided
care for more than five years
are more likely to have
someone to turn to (76%) than
those who have provided care
for five years or less (69%).
Those who provide(d) care for
10 hours a week or less are
more likely to have someone to
contact (79%) than those who
spend more time on caregiving
responsibilities (69%)
26%
Yes, all of the time
Yes, some of the time
No
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q985 Do/Did you feel that you have/had someone or some place to contact when
you need/needed help related to caregiving?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
55%
52
Sources of Caregiving Support.
Caregivers turn to NAMI for support, as
well as to family and friends.
NAMI
79%
Family
71%
Friends
56%
Support groups
52%
Government programs
35%
Other mental health
organization
32%
Place of worship/
religious org.
30%
16%
Coworkers
Neighbors
13%
Employee assistance
programs
10%
Other
1%
Caution: Source of sample is NAMI email
lists, so NAMI figure may be inflated
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q935 Besides mental health professionals such as social workers or psychologists,
to which of the following have you turned for support for your caregiving? Please
select all that apply.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
None of these
8%
53
Perceptions of Public Knowledge About Schizophrenia. The
overwhelming majority of caregivers believe the general public knows very little, if
anything, about the illness.
66%
Not Very Much /
Nothing at All:
94%
28%
4%
A great deal
Quite a bit (0% )
Some
Not very much
Nothing at all
HARRIS INTERACTIVE
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q955. How much do you think people who have no personal experience with
schizophrenia know about the illness?
©2008, Harris Interactive Inc.
1%
54
Emotions Experienced. The most common emotion felt by caregivers when
hearing someone talk about the person they care for or others living with
schizophrenia is sadness, followed by protective, and frustrated.
Sad
75%
Protective
72%
Frustrated
71%
Angry
55%
Challenged
53%
Disappointed
52%
Uncomfortable
45%
Guilty
22%
Empowered
17%
Proud
17%
Ashamed
than 5 years and 67% of
those who have provided
care for more than 5
years and feel sad when
hearing someone talk about
the person they care for or
people living with
schizophrenia.
58% of caregivers who
have provided care for
more than 5 years report
feeling challenged.
16%
3%
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q970. Which of the following have you experienced when hearing someone talk
about your (person cared for) or people living with schizophrenia? Please select all
that apply.
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
None of these
68% of caregivers who
provide care for a person
in treatment for more
55
Openness About Caregiving. The overwhelming majority of caregivers have been
open with at least some groups of people about providing care, particularly with friends.
Whom do you tell?
Friend
89%
Extended family
79%
Physician
75%
Spouse / Significant other
74%
Parents / Grandparents
68%
Mental health professional
68%
59%
Coworker
Child
53%
Neighbor
52%
Supervisor
39%
Pastor
38%
18%
Other
I did not inform anyone
10%
2%
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q945. Excluding the person you care/cared for, did you inform any of the following
that you are/were caring for someone diagnosed with schizophrenia? Please select
all that apply.
Q950. Which of the following reasons, if any, have kept you from telling people
about your (person cared for)’s condition and your care for him or her?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Your employer's HR dept.
56
Openness About Caregiving. Among those who haven’t told someone, the most
common reasons given relate to protecting the person they care for. Just four in ten
caregivers say they are completely open about their caregiving.
Why don’t you tell people?
My (person cared for) doesn't
want people to know
34%
People would look down on my
(person cared for)
33%
32%
People wouldn't understand
I don't think it's fair to my
(person cared for)
28%
16%
It isn't other people's business
14%
I'm a private person
People would ask too many
questions
11%
9%
I don't know how to tell people
8%
People would look down on me
7%
People would feel sorry for me
I am open about care giving
5%
43%
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q945. Excluding the person you care/cared for, did you inform any of the following
that you are/were caring for someone diagnosed with schizophrenia? Please select
all that apply.
Q950. Which of the following reasons, if any, have kept you from telling people
about your (person cared for)’s condition and your care for him or her?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Other
57% of all caregivers
report having a reason for
not telling others about the
illness the person they care
for lives with.
57
What Caregivers Want Others to Know.
Selected Verbatims
Advice to other
caregivers
42%
27%
Importance of
educating the
public
Understanding
sufferers
Treatment
issues
Lack of social
acceptance
General
mentions
“It really helps to get counseling for yourself,
because there are times when the stress
transferred to the caregiver is overwhelming.”
“The public needs to fully understand Schizophrenia first,
before people can begin to grasp the toll this illness takes
on the individual affected by this disease and the physical
and mental strain experienced by the family members
caring for the person afflicted by Schizophrenia.”
21%
18%
“The most important thing for me to realize was
that my sister truly was not responsible for her
actions.”
“The need for antipsychotic meds that have
less physical side effects so that the patient
is more willing to stay on the meds.”
15%
“Stigma is a big issue. Most
people don't understand.”
13%
36%
BASE: ALL QUALIFIED CAREGIVERS (N=256)
Q997. What do you think is the most important thing to share about your experience
caring for someone with schizophrenia?
HARRIS INTERACTIVE
©2008, Harris Interactive Inc.
Importance of
support
“Prepare to be challenged by the disease,
the person, and the system.”
58
©2008, Harris Interactive Inc.
Demographics
HARRIS INTERACTIVE
59
Demographics
Gender
Age
Caregivers
People Living
with
Schizophrenia
General
Public
Caregivers
People Living
with
Schizophrenia
Male
49%
17%
45%
HS or less
36%
7%
17%
Female
51%
83%
55%
Some College
33%
36%
46%
18-24
8%
1%
8%
College or more
32%
58%
37%
25-34
20%
4%
20%
Employed
56%
67%
38%
35-44
18%
10%
28%
Not employed
9%
5%
41%
45-54
20%
29%
28%
Retired
22%
28%
11%
55-64
16%
38%
14%
Student
10%
3%
17%
65+
17%
17%
1%
Homemaker
13%
12%
11%
Mean
46.3
54.8
41.8
Less than $35K
25%
16%
65%
White
73%
84%
78%
$35K- $74,999
30%
30%
18%
Black
11%
2%
4%
$75K-$99,999
11%
17%
5%
Hispanic
12%
5%
7%
$100K or more
18%
19%
5%
Other
2%
4%
9%
Decline to answer
16%
19%
8%
Education
Employment
Income
©2008, Harris Interactive Inc.
Race
General
Public
HARRIS INTERACTIVE
60
Custom Demographics
People Living
with
Schizophrenia
SSDI
46%
56%
Medicare
45%
Medicaid
Person
Cared For
Health
Insurance
Medicaid
55%
51%
Medicare
46%
55%
45%
Provided by family member’s employer
24%
Food Stamps
33%
40%
Provided by caregiver’s employer
14%
SSI
46%
34%
Private, family member paid
12%
Vocational
rehabilitation services
18%
29%
Private, caregiver paid
12%
Job placement assistance
18%
20%
Provided by the employer of the person living
10%
Public housing
18%
17%
Private, paid for by the person living
6%
Welfare
9%
12%
Veterans Affairs
5%
Veterans Affairs benefits
5%
10%
None of these
2%
None of these
19%
19%
People living with schizophrenia and never had
insurance
4%
Not sure
1%
©2008, Harris Interactive Inc.
Gov’t
Benefits
Person
Cared For
HARRIS INTERACTIVE
61
Custom Demographics
Gender
Age
People Living
with
Schizophrenia
Person
Cared For
People Living
with
Schizophrenia
Male
76%
45%
n/a
31%
Female
24%
55%
Yes, now
n/a
1%
Under 17
4%
--
In the past, after diagnosis
n/a
18%
18-24
18%
8%
In the past, before diagnosis
n/a
15%
25-34
35%
20%
No
n/a
69%
35-44
22%
28%
Hospital/Mental Health Institution
63%
n/a
45-54
12%
28%
Supported Housing/Group Home
44%
n/a
55+
9%
15%
Homelessness
35%
n/a
Mean
35.5
41.8
Jail/Prison
33%
n/a
Yes
16%
7%
Drug/Alcohol Rehab
27%
n/a
No
84%
93%
None of these
20%
n/a
Homelessness
Ever
Experienced…
Yes, ever
©2008, Harris Interactive Inc.
Veteran Status
Person
Cared For
HARRIS INTERACTIVE
62
Age at First Symptoms
Age at First Mental
Health Diagnosis
Age at Schizophrenia
Diagnosis
HARRIS INTERACTIVE
Person
Cared For
People Living
with
Schizophrenia
35-44
4%
20%
28%
45-54
4%
7%
n/a
16%
55+
1%
--
35-44
n/a
6%
Not Sure
9%
7%
45-54
n/a
2%
Mean
17.2
28.9
55+
n/a
--
Under 17
n/a
7%
Not Sure
n/a
14%
18-24
n/a
29%
Mean
n/a
20.5
25-34
n/a
29%
Under 17
n/a
21%
35-44
n/a
20%
18-24
n/a
37%
45-54
n/a
5%
25-34
n/a
24%
55+
n/a
--
35-44
n/a
12%
Not Sure
n/a
9%
45-54
n/a
2%
0-3
29%
21%
55+
n/a
--
4-7
19%
20%
Not Sure
n/a
4%
8-10
10%
19%
Mean
n/a
24.5
10+
29%
41%
Under 17
18%
7%
Not sure
11%
7%
18-24
46%
29%
Mean
10.6
12.8
25-34
18%
30%
Person
Cared For
People Living
with
Schizophrenia
Under 17
n/a
34%
18-24
n/a
25-34
Age at First Treatment
Years in Treatment
©2008, Harris Interactive Inc.
Custom Demographics
63