American Journal of Onhopsvchimry, 68(1), January 1998
THE FAMILY AS CAREGIVER:
A Group Psychoeducation Model for Schizophrenia
Carol S. North, M.D., David E. Pollio, Ph.D., Byron Sachar, M.S.W., Barry Hong, Ph.D.,
Keith Isenberg, M.D., Gina Bufe, Ph.D., R.N.
A professionally led multifamily psychoeducation program for families with a
schizophrenic member was designed according to participating families' reported concerns. The families provided information on their problems, needs,
coping, and requirements from the program. They expressed more concern about
"negative " symptoms of schizophrenia (e.g., social withdrawal) than about positive ones (e.g., hallucinations). Participants' overall positive response to the program is discussed in terms of further development of a multifamily psychoeducation model with family-generated content.
R
ecent scientific advances in medical
- and drug treatment have demonstrable relevance for psychosocial management as a necessary component of care for
individuals with severe mental illness. In
the mental health sector, dwindling sources
of funding have shifted the responsibility
for patient care into the community. Families must shoulder many aspects of care for
their seriously mentally ill family members, even though they lack special training, knowledge, or access to sufficient professional support. In this environment, a
psychoeducational approach to training
families for their new role has begun to appear in the clinical literature.
This approach is a well-established concept, but relatively ill-defined (Hatfield,
1988). Drawing from Walsh's (1992) defi-
nition, psychoeducation groups may be
characterized for present purposes as having specified duration, closed membership,
and facilitation by one or more trained leaders. Their purpose is to educate members
about the illness and give emotional support, but not to provide formal psychotherapy.
In the growing literature on family psychoeducation, a number of investigations
have described multifamily psychoeducation programs for families with a mentally
ill member (Anderson, Reiss, & Hogarty,
1986; Barrowclough & Tarrier, 1987;
Doane, Goldstein, Miklowitz, & Falloon,
1986; Falloon et al, 1982; Falloon et al.,
1985; Falloon, McGill, Boyd, & Pederson,
1987; Hogarty et ai, 1986; Hogarty, Anderson, & Reiss, 1987; Leff, Kuipers, Ber-
A revised version of a paper submitted to the Journal in February 1996. Authors are al: Department of
Psychiatry, School of Medicine, (North, Hong, Isenberg) and George Warren Brown School of Social Work
(Pollio), Washington University St. Louis; and in private practice, Centerville, Mass. (Bufe). Byron Sachar,
formerly of Barnes-Jewish Hospital, St. Louis, is deceased
© 1998 American Orthopsychiatric Association, Inc.
39
40
FAMILY PSYCHOEDUCATIONAL GROUPS
kowitz, Eberlein-Vries, & Sturgeon, 1982;
Leff, Kuipers, Berkowitz, & Sturgeon, 1985;
Leffet al, 1988; Leffet al, 1990; Levene,
Newman, & Jeffries, 1989; McFarlane et
al, 1995; Tarrier et al., 1988; Tarrier et al.,
1989). McFarlane's group documented a
cost-effectiveness ratio of $34 of inpatient
costs saved for every dollar spent on multifamily psychoeducational treatment. In
published reports, the majority of such programs have focused on reducing "expressed emotion" in families, choosing it as
a major outcome variable. All reports of
professional psychoeducation programs
show a content based on predetermined
problems identified by the professionals
who designed the programs. None of the
programs seems to have been designed for
a flexibility that would allow changes in
program content to match needs identified
by the families who are members of the
group.
That the response of the mental health
professional community to families' unmet
needs is too slow and insufficient is suggested by the recent development of a family-designed, structured psychoeducation
project, the Vermont Journey of Hope program (Burland, 1992), affiliated with the
National Alliance for the Mentally 111. The
program was set up to deal with problems
and concerns of families caring for a mentally ill member from the families' perspective. The existence of such a program implies mat professionally developed family
psychoeducation programs have lost sight
of the valuable resource represented by
families (Hatfield, 1979) for developing
the content of family psychoeducation materials.
This article presents die methods and exploratory findings from a pilot study of a
program for training families as caregivers.
It was part of a multifamily group psychoeducation program for families with a member suffering from schizophrenia. The content of the program was tailored in re-
sponse to the express needs of the families
participating in each group.
METHOD
Family Workshops
Over a two-year period, four one-day
public workshops for families with a schizophrenic member were held at the Washington University Medical Center. The workshops were formed to introduce the process
of educating families about schizophrenia
and to recruit families for a multiple-family
group program.
Recruitment. Participants for the workshops were recruited from the inpatient
psychiatry services at Barnes-Jewish Hospital, from a mailing to all members of the
St. Louis Metropolitan Alliance for the
Mentally 111 (AMI), and by word-of-mouth
via contacts by project staff.
Sample. A total of 56 individuals from
34 families participated in the four workshops: eight individuals from four families
were in the first workshop, 16 from 11
families in the second, 19 from 10 families
in the third, and 13 individuals from nine
families in the fourth. Women constituted
53% of participants, and only one of the
families was from a minority group (African-American).
Program. The program presented at the
workshops consisted of didactic presentations on the history of schizophrenia, the
illness's symptoms and diagnostic criteria,
its causes (drawing from neurochemistry
and genetics), and relevant medications, as
well as an interactive discussion of problem solving techniques.
Measures. At each workshop, participants
completed the North-Sachar Family Life
Questionnaire (N-SFLQ), a self-report instrument designed for and piloted in mis
study.* It contains 11 questions (each with
a range of one to five degrees of effect) intended to elicit information about family
members' perceived ability to manage the
illness and related crises, knowledge about
•Information on the questionnaire is available onrequestfromfirstauthor.
NORTH ETAL
the illness, disruptions to family life, ability to set and achieve behavioral expectations for and to communicate with the ill
member, guilt feelings, number of hospital
admissions and hospital days in the past
year, and number of days lost from work
due to the illness.
At the end of the workshop, families
completed a satisfaction questionnaire, also
designed for this study, about the workshop. They were then invited to join a family group for ongoing meetings to extend
over at least one year.
Those families that participated in the
group meetings were again administered
the N-SFLQ at the end of the first year.
Multiple Family Groups
From these workshops, two family groups
were started, in which ill family members
were also invited to participate. The first
group began meeting in August 1993 with
eight families; one of these dropped out in
the second month, after poor attendance,
while another dropped out in the eighth
month, after sporadic attendance. This group
consisted of 16 individuals at the start and
12 at the end, and included the ill member
in three of the families. A second group of
five families with eight individuals, including the ill member from two of the families, began in January 1994 but terminated
in the fourth month, after the untimely death
of a project leader.
Inclusion criteria for the family groups
required only that the identified ill family
member have a diagnosis of schizophrenia,
with or without comorbid disorders. Treatment status of the ill family member might
be inpatient, outpatient, involuntary commitment to a forensic facility in another
state, or not in treatment.
The family groups met for 90 minutes,
on two evenings per month during the first
year and once every three months during
the second year. Groups were facilitated by
two leaders, one from a psychiatric/nursing
background and the other from a family
therapy/social work background, providing
41
an interdisciplinary team with broad coverage of professional expertise.
At the first family group session, members were asked to list their main difficulties and concerns. The reported problems
were compiled into a list that was returned
to the families for ranking in order of severity; the investigators then sorted these
rankings into a master list using a Q-sort
procedure. Thus, each family group arrived
at a problem list customized to its own
needs (see TABLE 1 for the list generated by
the first group). Subsequent sessions were
each devoted to a single topic identified by
the group, and dealt with in descending order of importance. These identified problems provided the content and order of all
the family group sessions during the first
year's program.
The structure of the ongoing family
meetings was developed through modification of McFarlane's group methods (McFarlane et al, 1991). For the first 15-20
minutes of each session, families shared
their recent experiences and brought the
group up to date on their progress and
problems. If didactic material on the meeting's topic was available, a 15-20-minute
lecture was presented on related research
knowledge, sometimes by an expert invited
for the purpose (e.g., a social services expert on ways to gain access to services).
Table 1
FAMILIES' RANKED PROBLEM LIST
1. Negative symptoms (esp. amotivation and social
withdrawal)
2. How members can be supportive of ill member
3. Communication with ill member
4. Social skills
5. Relapse
6 Medications and side effects
7. Hallucinations and delusions
8 Getting along with other family members; how to
support one another
9. Insight and denial; treatment resistance; compliance
10. Recognizing and dealing with feelings (ill member's
andfamHy's)
11. Obtaining and managing medical care
12. Community resources
13. Hope and hopelessness
14. Spirituality
15 WeUness
42
FAMILY PSYCHOEDUCATIONAL GROUPS
Companion reading material in the form of families were instructed to consult the supfive popular self-help books on schizo- plemental literature as preparation for the
phrenia and serious mental illness (Art- next session. At the beginning of each meetdreasen, 1984; North, 1987; Torrey, 1995; ing's didactic section, they were asked
Walsh, 1987; Woolis, 1992) was made avail-what they had learned from their reading,
able. A 20-minute discussion followed in and it became evident that the self-help
which families described manifestations at books (and, indeed, the self-help literature
home of the problem under discussion. Mem- in general) contained little or no informabers then participated in 20 minutes of tion on many issues—insight, amotivation,
"brainstorming" about ways of dealing spirituality—about which the group memwith the situation, and the group leaders bers were seeking practical help.
helped stimulate them to think of new ways
Lists collected from these and later famof managing problems. Shared ideas were ily groups are being accrued on an ongoing
jotted on easels for all to view, and families basis to form a database of family manifeswere encouraged to record the information tations of problems and of creative probin personal notebooks (in the team's expe- lem solving strategies from group brainrience, members often referred back to storming sessions. A list generated by one
these notes when questions arose about of the first family group sessions is shown
contents of earlier sessions).
in TABLE 2.
At the end of each session, the topic for
the next session was announced. Some topics required two or three sessions, as determined during the group meetings whenever the amount of material generated became too great to be covered in one session. When a new topic was announced,
In some group sessions, special exercises
such as relaxation and role playing helped
members learn coping skills and problem
solving techniques. For example, family
members were given a demonstration of
what it feels like to hear voices: while one
group member tried to give complicated di-
Table 2
SELECTED ITEMS GENERATED FROM DISCUSSIONS ABOUT FEELINGS
III Member's Feelings
Like a freak, the 'ill person"
Burden on family
Anger at illness/wortd/God/famity/ttoctors; Why me?
Lonely, isolated
Guilt -What did I do to get this?"
Sadness, grief, sorrow
Shame—hiding out at home
Hypersensitivity ("as if under a microscope')
Happy times, glad for doing well
Feel loved and cared for
Lack of feelings/unable to express feelings
Family's Feelings
Anger at iHness/wwM/GodrtamBy/doctors/patient;
"Dont know who to get angry with/Why me?"
Lonely, isolated, alone
Guilt f D i d I cause this/Was I insensitive/Did I abandon when in need/Am I doing enough?")
Resentment of ill member (especially siblings)
Happy times, glad for patient doing weH
Fee) burdened
Embarrassment, shame, hiding out at home
Fears: f u t u r e * r r w r t e r t flehavfcx/suWdenitolence/
harm to iH member/the unknown/getting the Mness
(siblings)
Sadness, grief, sorrow, despair
Apprehension: "What happens after I'm g o n e r
Possible Solutions for III Member's Feelings
Sometimes it may help to ignore feelings—to a point
Distract yourself with activities
Take good care of yourself
Ventilate
Get space and time away
Do things you enjoy
Forgive yourself
Solutions for Family's Feelings
Ignore feelings (mostly your own)—to a point
EmpattHze, discuss, communicate
Ventilate, verbalize
Avoid assumptions (e.g. HI members silence may not
be anger)
Avoid probing too directly (e.g., ask "What's up,' not
"What ate you thinking;
Drop what you are doing and listen when ill member
wants to talk
Acknowledge iff member's feeHngs
Give self and W member space
Give encouragement
Figure out what you need, then say it
Have hope
NORTH ET AL
rections to another, three people stood behind the member who was talking and enacted "voices."
43
nificance (one-sided paired /-test, /T=.O57).
No other significant differences were found
in analysis of the data.
Contrary to expectations, the main conRESULTS
cerns identified by the families were not
Data obtained at the workshops from the the "positive" symptoms of psychosis (e.g.,
N-SFLQ determined the level of partici- hallucinations, delusions, violent outbursts,
pants' knowledge about the illness before suicidality) but the "negative" ones (e.g.,
joining the program. Though none reported social withdrawal, lack of communication,
excellent knowledge, all indicated some: poor social skills, decreased motivation,
43% good, 52% fair, and 5% not good. Mem- excessive sleeping, poor hygiene and perbers reported illness-related disruptions to sonal habits).
the family constantly (5%), frequently
Feedback from members during the one(24%), occasionally (38%), infrequently year group program and at its end indicated
(29%), and never (5%). They reported their that they found both the content of the lecability to deal effectively with illness-re- tures and the group discussions and brainlated crises as excellent (0%), good (36%), storming sessions quite helpful. Members
fair (45%), not very good (14%), and poor frequently commented that they had tried
(5%). Mean number of hospitalizations for some of the strategies generated at previthe ill family member was 1.9 (SD=2.7), ous meetings and found them extremely
and mean number of days hospitalized in useful, or that they had discovered new
the last year was 84 (SD=157). It should be elaborations of the techniques. For examnoted that workshop participants who did ple, after a discussion of "triangulation" in
not opt to join the family groups reported family relationships, one member returned
45 (S£>=86) hospitalized days in the pre- to report that she had resolved triangulation
ceding year. Although a nonsignificant problems of communication in her family
trend, this difference suggests that the by having the two family members congroups may have attracted some families cerned talk directly to each other rather
with more severely ill members.
than snagging a third member as a commuThe satisfaction questionnaire adminis- nication conduit. At later meetings, several
tered at the end of each workshop revealed members reported that this idea had proved
that 86% of participants found the work- very helpful to diem, also.
Group members indicated appreciation
shop experience either extremely helpful
(66%) or moderately so (20%). Specifical- for the leaders' approach to them as partly, 66% found the workshop moderately or ners in the caregiving process, rather man
extremely helpful in coping better with the as part of the pathology. A member who
illness, 84% in sharing with other families, had been a leader of a family-sponsored
and 79% in hearing other families' stories. group program (Burland, 1992) remarked
A common observation was that families on the advantages of professional leadership in maintaining a productive, positive
wanted more time for sharing and talking.
The N-SFLQ wasre-administeredto par- focus at the present group's sessions.
Families reported that while it was usuticipating families at the end of the first
year of family group sessions. Only one ally helpful to have their ill member preoutcome measure had sufficient numerical sent at the meetings, there were times when
range to provide comparisons: the number they would have felt more free to discuss
of days hospitalized was reduced from 84 material in their absence. They suggested
(SD=157) in the year before the group pro- mat the ill members and other family memgram to 76 (SZ>=162) in the year spanning bers split into separate subgroups for some
the program, a trend toward statistical sig- activities. Over the course of the program,
44
FAMILY PSYCHOEDUCATIONAL GROUPS
in addition to learning and developing problem-solving strategies, families in the groups
bonded with one another; they reported this
as one of the most valuable aspects of the
group experience, hot least because they
learned from one another, as well as from
the professionals.
The benefits experienced by the families
who completed the first group program led
them to schedule regular meetings under
their own auspices between the scheduled
quarterly, professionally facilitated meetings of the second year. Their suggestions
for future groups were that they should allow even more time for sharing, and give
more help maneuvering social service systems for assistance with the illness.
Group members also reported continuing
frustration with the ebbs and tides of their
family member's illness, encountering false
hope and hopelessness, and an ongoing
struggle with the chronicity of the illness.
positive symptoms because the former are
more likely to be overlooked in treatment
and less likely to be eradicated by the medications.
The results of this pilot study, while encouraging, were limited, largely due to the
small sample size. The reduction in hospital days was modest in clinical terms, but it
can represent considerable savings in cost
of treatment. Comparison with a control
group is necessary to determine whether
this reduction was due to the intervention
or to extraneous factors. However, it was
consistent with the findings of McFarlane
and colleagues (1995), and provides additional support for the validity of the multifamily psychoeducation model.
Families completing the one-year family
group program reported an intense group
cohesion as one of the most positive aspects of their group experience. This bonding may have benefited from the families'
active role in determining program content
and developing group solutions to mutual
DISCUSSION
The utility of multifamiiy psychoeduca- problems. It is a model that provides an
tion groups in the management of schizo- ideal forum for development of new stratephrenia seems evident from the findings of gies and techniques by group members in
this pilot study, which confirms those of an emotionally supported setting, and it
other research (Anderson et al, 1986; Bar- seems likely that the major outcome in
rowclough & Tarrier, 1987; Doane et al., studies of multifamiiy psychoeducation pro1986; Falloon et al, 1987; Hogarty et al., grams will be such direct benefits to fami1986;LeffetaL, 1990; Leveneetal., 1989; lies. It is also possible, as has been postuMcFarlane et al., 1995; Tarrier et al., 1989).lated in other studies (McFarlane et al.,
The families in this study provided a great 1995; Moller & Murphy, 1997), that endeal of information on their problems and hanced family satisfaction and function reneeds, how they cope with the illness, and sulting from family programs may indihow a psychoeducation program can help rectly improve outcomes for patients.
diem. Data collected at the beginning of the
The greater number of days spent in hosproject suggests that these families per- pital by ill members of those families who
ceived themselves as having insufficient participated in the groups suggests selfknowledge and skills to manage the illness selection of families with members who
effectively.
were more ill. Alternatively, these may
Specific problem areas in which the fam- have been families who were more inclined
ilies needed help were also identified in the to get help, both from hospitalization and
present study. The primacy ofnegative symp- from family psychoeducation. It is not postoms on die families' problem lists sug- sible to clarify such relationships with the
gests a need for for greater focus on this present data, bat they could have a substanissue. It is possible that negative symptoms tial impact on issues of recruitment to famcreate more problems in families than do ily psychoeducation groups.
NORTH ET AL
45
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