Shortfalls of Treatment for Patients with Schizophrenia:
Unmet Needs, Obstacles to Recovery
Eris F. Perese, APRN-PMH
Clinical Associate Professor
Yow-Wu Bill Wu, PhD
Associate Professor
University at Buffalo, School of Nursing
3435 Main Street, Buffalo, NY 14127
Citation:
Perese EF & Wu YB (2010). Shortfalls of Treatment for Patients with Schizophrenia: Unmet
Needs, Obstacles to Recovery. International
Journal of Psychosocial Rehabilitation. Vol
14(2). 43-56
Abstract
Background:
Recovery-oriented programs such as Assertive Community Treatment (ACT)
achieve improvement in many areas; however, impaired functioning is
often unchanged and results in unmet needs, obstacles to patients’ goal
of recovery. Objectives: Determine if there is change in
participants’ unmet needs after 12 months of ACT. Study design is
descriptive and longitudinal. Results: On admission, 20 to 30% of
participants identified unmet basic survival needs--food, clothing,
housing, finances, and medical/dental care; 32-52% for friends,
transportation, and meaning to life; 77.5% for group membership; and
95% for a role. At 12 months, fewer patients had unmet survival
needs. Personal safety need was unmet for 27.5%. There was no
change in unmet group membership, meaning to life, and role
needs. Fewer participants reported unmet needs for friends
identifying ACT team as friends. Conclusion: ACT is effective for
basic survival needs and health care needs but not for social
connectedness needs. .
Key words: Assertive Community Treatment (ACT), schizophrenia, recovery, unmet needs
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Introduction
For a long time,
the future for patients with schizophrenia was a life longsentence to a chronic illness with no hope
of recovery (Spaniel, Gagne & Koehler, 2003). Treatment goals were
compliance with medications, reduction of hospital admissions, and adjustment
to a chronic illness (Marder, 2005). By the 1990’s, patients and families were
repudiating those goals (Deegan, 1996; Ramon, Healy & Renouf, 2007) and
advocating for recovery, the same treatment goal held for patients with medical
illnesses (Ahern & Fisher, 2001). Now, recovery is accepted as the desired
outcome of psychiatric treatment (Ramon et al. 2007).
The goals of
recovery are for patients to return to a meaningful social role, develop
relationships, re-claim a sense of self identity, and become participating
members of the community (Ahern & Fisher, 2001; Lysaker & Buck,
2006). The process of recovery involves
changes that patients make—keeping hope alive; accepting the need to be
actively involved in promoting healing; developing self-confidence, courage and
responsibility; finding a new meaning or purpose in life; and rebuilding social
connectedness by taking on new roles in relationships, work, and the community
(Jacobson & Greenley, 2001). The
process of recovery also involves factors external to the patient such as
mental health care providers’ attitudes of compassion, respect, and belief in
patients’ ability to achieve healing and the provision of recovery-oriented
services. Recovery-oriented services include management of patients’ symptoms
and distress, meeting patients’ needs, promoting rehabilitation, and protecting
patients’ rights and personal safety (Anthony, 1993; Jacobson & Greenley,
2001).
Comprehensive
treatment programs such as Assertive Community Treatment (ACT) that promote the goal of recovery have
been found to reduce the hallucinations, delusions, and depression experienced by
patients with schizophrenia but are less effective in reducing the problems
related to impairment of functioning—deficits in self-care, academic
difficulties, inability to work, problems with social interactions, and
inability to develop and maintain intimate relationships (McGorry, 2005; Hyman
& Insel, 2007). Patients’ residual
impaired functioning often leads to unmet needs with greater impairment of
functioning linked with higher rates of unmet needs (Becker, Leese, Krumm,
Ruggeiri, Vazquez-Barquero & the Epsilon Study Group, 2005).
The nursing
theory of adaptation, Modeling and Role-modeling (M & RM), (Erickson,
Tomlin & Swain, 1983) that guides this study proposes that patients meet
their needs through attachment to others; to community institutions such as those
that provide health care; and to valued causes and beliefs. When needs are met, patients develop internal
resources such as hope and a sense of self-competence that enable them to cope adaptively
with the challenges and stressors associated with their illnesses (Bray, 2005).
When needs are unmet, or only partially
met, patients’ potential to adapt is diminished and they may use maladaptive
coping or require more health care services and compensatory interventions
(Erickson, 2006).
The needs of all
humans include basic survival needs (food,
clothing, housing, transportation, financial resources, and personal
safety); health care needs (mental health care, physical health care including
dental care); and social-connectedness needs (friends, a group to belong to, a
role in life, and a meaning or purpose in life) (Hansell, 1976). Although needs are often considered to be
hierarchical (Maslow, 1970), Hansell (1976) believes that needs are
cantilevered rather than hierarchical with each need supporting all other
needs. One unmet need adversely affects all needs, ability to adapt to
stressors, and achievement of well-being.
Unmet needs among patients with severe mental illness
such as schizophrenia
Basic survival needs: food, clothing, housing,
transportation, finances, and personal safety.
Among patients with severe mental illnesses such as schizophrenia, needs for food and clothing
are not often reported as unmet (Becker, et al. 2005). For example, only 7% of patients with severe
mental illness reported an unmet need for food in the study of Grinshpoon and
Ponizovsky (2007). Patients may live at
home or in supervised housing where food and clothing may be provided for them
and some may obtain food and clothing from soup kitchens or drop-in
centers. Ashcraft, Anthony and Martin
(2008) believe that recovery begins with appropriate housing. The need for appropriate housing was found to
be unmet for 46% of patients with schizophrenia (Kovess et al. 2005). Similarly,
transportation is a frequently occurring unmet need (Grinshpoon &
Ponizovsky, 2007). Financial resources
are often not adequate to live on (Ware, Hopper, Tugenberg, Dickey &
fisher, 2007). Beebe (2002) reported
that 27% of patients with schizophrenia living in the community identified
financial problems, lack of sufficient funds to get by. For over 30 years, researchers have described
the unmet need of patients with schizophrenia for personal safety, safety from
abuse and victimization (Krauss & Slavinsky, 1982; Lehman & Linn, 1984;
Perese, 1997) with Teplin, McClelland, Abram, and Weiner (2005) reporting victimization
rates of 25% to 38%, 12 times the rate for the general population.
Health care needs.
In comparison
to the general population, patients with schizophrenia have more health problems and
a 20% shorter life span (Salokangas, 2007; Leucht, Henderson, Maj &
Sartorius, 2008). About 50% have at
least one medical condition such as diabetes, obesity, chronic obstructive
pulmonary disease, cardiovascular disease, or HIV infection (Connolly &
Kelly, 2005; Baki, Meszaros, Stutynski, Dimmock, Leontieva, et al. 2009). They also have more dental and eye problems
than the general population (Dixon, Postrado, Delahanty, Fischer & Lehman,
1999). However, despite this increased
vulnerability, they are less likely to receive preventive care and needed dental
care than the general population (Salokangas, 2007; McCreadie, Stevens,
Henderson, Hall, McCaul, et al. 2009).
Social- connectedness needs.
Social connectedness, the reciprocal relationships
that individuals have with others, provides
support and a sense of belonging and is associated with health and well-being (Ware
et al. 2007; Social Connectedness: Social Report 2008). Social connectedness develops from the roles
that individuals play in life as partners, friends, teammates, workers, and
participants in community and spiritual activities. Among patients with schizophrenia, social
connectedness has been found to be a strong predictor of positive response to
treatment (Harvey, Jeffreys, McNaught et al. 2007) and patients believe that
social connectedness is a key factor in promoting recovery (Happell, 2008).
Friends.
Many authors have described the lack of friends
among patients with severe mental illness (Bellack & Muesser, 1986; Torrey,
1988). For example, among patients with
severe mental illness who belonged to the National Alliance for the Mentally
Ill (NAMI), 62% identified an unmet need for a friend (Perese,
1997). In describing the effect of lack of
friendship among patients with severe mental illness, Wheaton (1997) says that it is the sense of isolation,
the loneliness, and the lack of someone to talk with that is most troublesome. More
than half of patients with severe mental illness describe problems with
loneliness (Clinton, Lunney, Edwards, Weir & Barr, 1998) in comparison to
one-third of the general population (Lauder, Sharkey & Mummery, 2004). Recently,
Beebe (2010) reported that 42% of patients with schizophrenia living in the
community identified loneliness as a problem.
Role.
Role in life is often associated with employment, filling
the role of a worker and co-worker (Buizza, Schulze, Bertocchi, Rossi,
Ghilardi, et al. 2007). Unfortunately, among patients with schizophrenia,
unemployment is high with a rate of 72.9% reported by Rosenheck, Leslie, Keefe,
MeEvoy, Swartz, et al. (2006). Patients
with severe mental illness believe that work enables them to have pride in
themselves, to develop coping strategies for managing psychotic symptoms so
that they can work, and to re-establish a sense of identity. They believe that work promotes recovery
(Dunn, Wesiorski, & Rogers, 2008).
Meaning or purpose to life.
A sense of meaning or purpose to life
encompasses both spirituality and religiousness (Mohr & Huguelet, 2004; Huguelet,
Mohr, Borras, Gillieron, C. & Brandt, P-Y., 2006) and is associated with a sense of well-being
(Stolovy, Lev-Wiesel, Doron & Gelkopf, 2009). Patients with schizophrenia
describe religion as being an important part of their daily life (Huguelet et
al. 2006); and, they often use religion to cope with the symptoms of their
illness and with daily problems (Tepper, Rogers, Coleman et al. 2001). The role that a sense of meaning or purpose
plays in recovery is related to its ability to facilitate a reconstruction of a
sense of self-identity and to build social connectedness (Roe & Chopra,
2003; Mohr & Huguelet, 2004).
Although meeting
their needs has been identified by patients with severe mental illness as the first step toward recovery
(Recovery, 2003), there is little information about need satisfaction as an
outcome of recovery-oriented programs such as ACT. Cadena (2006) suggests that meeting needs
should be a core component of treatment programs and that it should be
evaluated as an outcome of treatment.
Purpose
The
purpose of this study was to determine if participation in Assertive Community
Treatment (ACT) by patients with schizophrenia for one year was associated with
a decrease in specific unmet needs.
Method
The research was guided by two questions:
1. What percentage of patients with
schizophrenia on admission to ACT had specific unmet needs—food, clothing,
transportation, housing, financial resources, medical care, dental care, a
friend nearby, a friend talk to, a friend who could help, a group to belong to,
a role in life, and, a meaning/purpose in life?
2. Was there a difference in percentage of
patients with specific unmet needs between admission to ACT and after 12 months
of ACT?
Setting
and sample
Setting. The setting was an ACT program operated by a
not-for-profit Behavioral
Health Services
Organization in an urban area of Western New York. ACT is distinguished from other comprehensive programs for patients
with severe mental illness by several features.
ACT uses a team approach. The team
is multidisciplinary and includes psychiatrists, social workers, nurses,
rehabilitation specialists, case managers, and peer counselors. It serves as
the primary provider of all patient services and, because of this feature, has
the ability to rapidly provide services—food, clothing, housing, medical care,
financial resources, and legal aid-- often within hours of the patient being
admitted to ACT. It provides services in
community settings such as in the patients’ homes, group homes, or hotel
rooms. It is pro-active using outreach
to assist patients to participate in treatment, live independently, and move
toward recovery (Assertive Community Treatment Association, 2009).
ACT is
considered to be the gold standard of care for patients with schizophrenia
(Kovess, de Almeida Jose, Carta, Dubuis, Lacalmontie, et al. 2005; McGorry,
2005). There is strong evidence that ACT
reduces hospitalizations and length of stay in hospital (Barry, Zeber, J.,
Zeber, J.E., Blow, & Valenstein, 2002; van Os, 2009) and improves
psychiatric symptoms (Barry et al. 2002), functioning (Dixon, 2000),
housing stability (Phillips, Burns, Edgar, Mueser, Linkins, et al. 2001), and
quality of life (McGrew, Bond, Dietzen, McKasson & Miller, 1995). There is
weaker support for ACT’s ability to improve social adjustment and vocational
functioning (Burns, 2001). Some
researchers have questioned the compatibility of ACT and recovery suggesting
that fidelity to certain ACT principles—team approach, outreach, and high
intensity of services—may interfere with patients’ choices (Drake & Deegan,
2007). However, others believe that ACT can incorporate principles of
recovery—consumer choice, hope, respect, compassion, and patience—and that ACT is
well suited to the recovery model (Salyers & Tsemberis, 2007).
Sample.
After obtaining approval from the University at Buffalo’s Institutional Review Board and the agency’s
clinical director, the 71 patients in the ACT program were offered the
opportunity to join the study. Fifty-six (79%) agreed to participate and signed
consent forms. As reported previously, there was no significant
difference in age, race, marital status, living situation, employment,
dangerousness, arrests/incarcerations, hospital readmissions, and functioning
between patients who agreed to participate and those who refused (Perese, Wu
& Ram, 2004). The initial interview was done soon after admission to ACT,
within days if possible; but occasionally it would take longer to arrange a
time when the patient would be available to be interviewed; e.g., two to three
weeks after admission. In individual interviews, the senior author assessed the
participants with the Buffalo Client Assessment Inventory (BCAI) that was developed
by the authors. The BCAI includes
structured questions and 10 brief self-report instruments including ones that
measure specific unmet needs. At 12 months, participants were interviewed again
using the same instruments.
The results of the study of the 56
participants were presented in an article that described outcomes such as
psychiatric symptoms, distress, functioning, dangerousness, and stability of
housing (Perese et al. 2004). Data obtained
about specific unmet needs and the changes in specific unmet needs after treatment
were not presented. Among the 56 participants, 40 had been given a
diagnosis of schizophrenia by a psychiatrist on admission to ACT. Data related to the unmet specific needs of
these 40 participants with schizophrenia is presented in this study.
Variable:
specific needs
The specific needs measured in this study are those that Hansell’s
(1976) considered to be essential for survival.
They have been operationalized as need for: food, clothing,
transportation, housing, financial resources, medical care, dental care,
friends (a friend nearby, a friend to talk to, and a friend who could help),
group membership, a role, meaning/purpose in life, and personal safety. These needs have also been identified by
patients with severe mental illness as needs that must be met in the first step
toward recovery.
Study
design
This was a descriptive, longitudinal study of data obtained
as part of a larger, comparative study (Perese et al. 2004). Data about specific unmet needs had been
obtained but not examined nor reported .
Instrumentation
Record review was used to obtain data on
demographic characteristics,
employment
status, housing, psychiatric diagnosis, danger to self or others, hospital
admissions during year prior to ACT, and victimization
during year in ACT. The Social Support Index (SSI), (Bell, LeRoy & Stephenson, 1982), was used to measure
unmet needs for a friend who is nearby, a friend who can be relied on to
provide help, and a friend who you can talk to about problems; for a group
membership; and for a sense of meaning or purpose in life. The
response choices were yes, needs were reported as met, or no, not met. The Meeting Basic Needs Scale (Ellis,
Wilson & Foster, 1984) that has a score range of 7-28 with higher score
indicating more unmet needs was used to measure the need for: food,
clothing, transportation, housing, financial resources, medical care, and
dental care. Needs that were reported as always met or
met most of the time were considered to be met.
Needs that were reported as sometimes met or not at all were considered
to be unmet. The need for a role in
life was determined to be met if patients responded that they were employed, or
in school. The need for personal safety was determined to be met if review of
the record revealed no history of victimization during the year in ACT.
Results
Demographic
characteristics
The participants were predominantly male and
in the 30 to 49 year age group with more participants in the African American
group than other groups combined. Nearly half had not completed high
school. More than three-fourths had
never married and the others were divorced, widowed or separated. Nearly all,
95%, were unemployed or totally disabled.
The two participants (5%) who responded that they were working were not
working in competitive or sheltered situations.
They said that they earned their living by doing odd jobs. Participants were more likely to be living in
stable housing (house, apartment, room, group home, board-and-care) than in
unstable housing (homeless shelters, streets, motel, or with a friend). Nearly
all (91%) had been hospitalized during the year before admission to ACT with
one-fourth hospitalized more than three times. One-fourth of the participants
had engaged in behavior that was dangerous to others. All had a Global Assessment of Functioning
(GAF) score below 40, a score that indicates severe distress and impairment of
functioning. (See Table 1.)
Table 1. Demographic, clinical and
community adaptation characteristics on admission to ACT (n=40)
Gender
Male Female
Age
18.29
30-49
50 and >
Race
Black
White
Hispanic
Marital
status
Single
Divorced, widowed, separated
Education
Less than high school
High school
Some college
College degree
(Missing data for 2)
Employment/school
Employed
Unemployed
Disabled for work
Living
situation
Stable housing (apartment, room,
board and care)
Unstable housing ( homeless,
streets, shelters, with friends,
motel/hotel)
GAF
20
25
30
35
Admitted
to psychiatric hospital
during
year prior to ACT
0 hospitalizations
1-3 hospitalizations
More than 3 hospitalizations
|
n
(%)
32
(80)
8 (20)
3 (7.5)
29
(72.5)
8 (20)
25
(62.5
13
(32.5)
2 (5)
31
(77.5)
9 (22.5)
18
(47.4)
16
(42.1)
3 (7.9)
1 (2.6)
2 (5)
12 (30)
26 (65)
28 (70)
12 (30)
4 (10.0)
8 (20.0)
23
(57.5)
5 (12.5)
4 (10)
26 (65)
10 (25)
|
Global Assessment of
Functioning (GAF): 50-41 indicates serious distress and dysfunction;
40-31
indicates severe distress and dysfunction, 30-21 indicates inability to
function in most areas;
and 20-11 indicates dangerousness to self or others
(Rosse & Deutsch, 2000).
Unmet
needs at admission to ACT and after 12 months of ACT
The baseline assessment of specific needs
was done as soon after admission to ACT as possible, usually within days of
admission. Within basic needs, 17.5% to
40% of participants reported unmet needs with unmet needs for housing (30%) and
transportation (40%) greater than for food (22.5%), finances (20%), and
clothing (17.5%). Within health care needs, the unmet need for dental care
(27.5%) was greater than that for medical care (17.5%). Within social connectedness needs, a greater
number of participants identified unmet needs for a role in life (95%), a group
to belong to (75%), a friend who could help (62.5%), a friend to talk to
(48.7%), and a meaning or purpose in life (42.5%) than for a friend nearby
(37.5%). (See Table 2.).
Only 29 of the 40 participants were
available to be interviewed at 12 months. One subject had died, four had been
admitted to a long-term psychiatric institution, one was admitted to a nursing
home, two were incarcerated, two had been discharged for not participating, and
one was still with ACT but was not available to be interviewed.
The available data suggest that there was a
decrease in the percent of patients with unmet needs for housing (5.0%),
financial resources (7.5%), and medical care (7.5%). Although there was no decrease in the percent
of patients with an unmet need for a friend near by, there was a decrease in
unmet needs for a friend who could help and a friend to talk to. (In responding to these questions, participants
often identified ACT team members, especially peer counselors, as friends who
could help or friends they could talk to.) On review of the participants’
records at 12 months, it was found that
11 (27.5%) of the participants had reported incidences of victimization such
as: beaten in a fight, a stab wound, assaults, accosted for money, sexual molestation,
mugged and purse taken, and having winter coat stolen during the year that they
were in ACT. However, there was no
systematic method of collecting data on victimization. Counselors recorded
information about victimization when patients reported it. (See Table 2.)
Table 2. Percentage of patients with unmet needs on
admission to ACT and at 12 months after admission
|
Need
|
Unmet needs at admission to ACT (n=40)
|
Unmet needs at 12 months
(n=29)
|
|
Food
|
22.5
|
10.0
|
|
Clothing
|
17.5
|
17.5
|
|
Transportation
|
40.0
|
29.7
|
|
Housing
|
30.0
|
5.0
|
|
Financial resources
|
20.0
|
7.5
|
|
Medical care
|
17.5
|
7.5
|
|
Dental care
|
27.5
|
22.5
|
|
A friend near by
|
37.5
|
34.5
|
|
A friend who could help
|
62.5
|
30.0*
|
|
A friend to talk to
|
48.7
|
37.5*
|
|
A group to belong to
|
75.0
|
72.4
|
|
A sense of meaning to life
|
42.5
|
45.0
|
|
A role in life
(employment, married, student)
|
95.0
|
95.0
|
|
Personal safety
|
not
available
|
27.5%
|
* Patients
frequently identified members of the ACT team as a friend who could help or a friend to
talk to.
Discussion Limitations. Generalizability
of the findings of this study is limited by the small sample size and the fact
that the sample consisted of volunteers.
The researchers had no control over the selection of the sample. A further limitation is the high rate of
attrition. Only 29 of the 40 participants with schizophrenia were available to be
interviewed at 12 months. Because four participants had been readmitted
to an inpatient psychiatric unit, two were in jail, and two were discharged for
non-participation in ACT, it is likely that the eight participants no longer in
the study had greater severity of their illnesses or were less responsive to
ACT than the participants who remained in the study. Another limitation is that there
was insufficient power to detect differences from admission to 12 month
assessment. Despite these serious
limitations, the data are presented in order to add to the available
information about the unmet needs of patients with schizophrenia living in the
community and to the information about the outcomes of ACT.
In
response to research question one, the percent of patients with unmet needs at
the time of admission to ACT differed according to the category of need and
also by specific needs within a category.
For example, among basic needs--food, clothing, finances, and housing-- unmet
needs were reported by 17% to 30% of the participants. This relatively low rate of unmet needs may
be due to ACT’s ability to provide patients with food, clothing, small amounts
of money or vouchers, and housing very quickly, often within hours of being
admitted to ACT. The basic need for
transportation was reported as unmet by 40% of the participants; and, because
participants often added the comment that they walked everywhere, it is likely
that the unmet need was higher. One explanation for the high unmet need for
transportation is that more time is required for ACT to obtain bus passes than
the time required to meet other basic needs. Within
health care, medical care was reported as unmet by only 17.5% of the
participants but dental care was unmet for 27.5%%. Because of an agreement with a primary care
group, ACT was able to arrange for medical care very quickly but it took much
longer to arrange for dental care. This
finding supports previous reports of lack of dental care for patients with
schizophrenia.
Unmet needs were
highest in the category of social connectedness—meaning to life, friends, group
membership, and role in life. More than
40% reported an unmet need for a sense of meaning or purpose in their lives at
the time of the interview. Often they would add comments about what they had
once wanted to do in life or that once they had belonged to a church. Conversely, the finding that 60% had a sense
of meaning or purpose supports the reports of the importance of religion or
spirituality for patients with schizophrenia.
In relation to the unmet need for friends, more participants had a
friend who lived near by than had friends whom they could talk to or ask for
help. However, participants often added
that the friend nearby was the person who served them coffee in the coffee
shop. The unmet need for a friend who
could be depended on for help was highest, 62.5% of the participants. Although the literature has reported that
patients with schizophrenia often have small social networks and lack friends,
this study identifies the high rate of the specific unmet need for a friend who
could provide help. That three-fourths
(75%) of the participants identified an unmet need for a group to belong to, to
do things with, or just to hang out with poignantly depicts their lack of
connection to social or community activities.
Almost all of the participants
had an unmet need for a role in life as defined by this study— employed or in
school. However, it is likely that many of
the participants fulfilled roles not defined in this study—partners, helpers,
peace-makers, mentors, and others. For
example, Ware et al. (2007, p 472) suggest that role in life should include
“living a worthy life”. Thus, on
admission to ACT, many of the participants had unmet needs that were potential obstacles
to the goals of recovery--to return or develop a meaningful social role, to build
relationships, to re-claim a sense of self identity, and to become
participating members of the community
Research
question two asked if there was a difference in the percentage of participants with specific unmet needs
between admission to ACT and after 12 months of ACT. The
available data suggest that there was a marked decrease in the percent of
patients with unmet needs for housing, finances, and medical care. It seems
that, over time, ACT was able to help patients to find appropriate housing,
secure financial resources, and receive on-going medical care. Although there was only a slight decrease in
the percent of patients with an unmet need for a friend near- by, there was a greater
decrease in unmet needs for a friend who could help and a friend to talk
to. However, participants often
identified ACT team members, especially peer counselors, as the friends who
could help or friends they could talk to. Thus, it does not appear that the
participants built new friendships outside of the ACT team. There was a slight decrease in the unmet need
for group membership and a slight increase in the unmet need for a sense of
meaning or purpose in life. There was no
change in role in life. Overall, the data suggest that for social-connectedness
unmet needs—friends, group membership, meaning to life, and a role in life--there
was little or no response after 12 months of ACT. This finding supports previous reports of
ACT’s weaker ability to improve social adjustment and vocational
functioning.
The results of
this study suggest that recovery-oriented ACT programs for patients with
schizophrenia should add interventions that target unmet needs non-response to
ACT. For example, ACT could add support
groups, discussion groups, or other socializing opportunities such as coffee
clubs and could link patients with self-help groups such as psychosocial clubs or
ready made friends such as those provided by Compeer or Befriending
organizations to address the unmet needs for friends and group membership. The unmet need for personal safety could be
addressed by the ACT team assessing for bullying, harassment, victimization,
and exploitation at each patient visit and by providing interventions such as
crime prevention programs--similar to programs for acquaintance rape and family
violence-- and teaching “street smarts” to reduce victimization. The unmet need for a role in life such as
employment is challenging to address. The causes are multifaceted—lack of entry
level jobs, fear of losing financial entitlements and health coverage, deficits
of educational preparation, lack of prior work experience, and limited social
skills. In this study, because the ACT
program was already promoting vocational rehabilitation and supported
employment, it seems likely that more than 12 months are required to see a
change in employment. Finally ACT programs can seek the help of spiritual
leaders and parish nurses to create bridges to help patients meet their needs
for meaning to life.
After the study
was completed, the researchers shared the findings with the ACT team
emphasizing that unmet social connectedness needs appeared to be non-responsive
to treatment and that there was a need to address the unmet need for personal
safety. In response, the ACT team developed
discussion groups and coffee clubs for the patients that were well received by
the patients.
Conclusion
Some
of the unmet needs of patients with schizophrenia, such as the unmet need for
social connectedness, are obvious obstacles to the goals of recovery--patients
returning to or achieving meaningful social roles, relationships, and
membership in their communities. However, because needs are cantilevered, each
essential to the other and to overall functioning and well-being, every unmet
need is a deterrent to recovery. For
example, unmet needs for money, transportation, and desirable housing affect
the need for social connectedness and thus for recovery. This study found ACT to be effective in
meeting basic survival needs, with the exception of the need for personal
safety, and health care needs; but, ACT was less effective in meeting social
connectedness needs.
References
Ahern, L. &
Fisher, D. (2001). Recovery at your own pace:
Personal Assistance in Community Existence.
Journal of Psychosocial Nursing and
Mental Health Services, 39(4), 22-32. Anthony, W. A.
(1993). Recovery from mental illness: The guiding vision of the mental health
service system in the 1900’s. Psychosocial
Rehabilitation Journal, 16(4), 11-23. Ashcraft,
L., Anthony, W. A. & Martin, C. (2008). Home is where recovery begins. Behavioral
Healthcare, 25(5), 13-15. Assertive
Community Treatment Association (2009) ACT Model. http://www.actassociation.org/act/Model/ Retrieved on 5/9/2009).
Baki,
S., Meszaros, Z. Stutynski, K., Dimmock, J., Leontieva, L., Ploutz-Snyder, R.
et al. (2009). Medical comorbidity in patients with schizophrenia and alcohol
dependence. Schizophrenia Research, 107, 139-146. Barry,
K., Zeber, J., Zeber, J. E., Blow, F. C., & Valenstein, M. (2002).
Strengths versus Assertive Community Treatment: Patient outcomes and
utilization. Abstract Academy Health
Services Research and Health Policy Meeting, 19: 15. Http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f-102273963.html. Retrieved on 5/9/2009.
Becker,
T., Leese, M., Krumm, S., Ruggeri, M., Vazquez-Barquero, J. & the EPSILON
study group. (2005). Needs and quality of life among patients with
schizophrenia in five European centres. Social
Psychiatry and Psychiatric Epidemiology, 40, 628-634. Beebe,
L. H. (2002). Problems in community living identified by people with
schizophrenia. Journal of
Psychosocial Nursing and Mental Health Services, 40(2), 38-53. Beebe,
L. H, (2010). What community living
problems do persons with schizophrenia report during periods of stability. Perspectives in Psychiatric Care, 46(1).
48-55.
Bellack,
A. and Muesser, K. (1986) A comprehensive treatment program for schizophrenia
and chronic mental illness. Community
Mental Health Journal 22(3),
175-189.
Bell, R., LeRoy, J. & Stephenson, J.
(1982). Evaluating the mediating effects of
social support upon
life events and depressive symptoms. Journal of Community Psychology, 10,
325-340.
Bengtsson-Tops, A. & Hansson, L. (1999). Clinical and
social needs of schizophrenic outpatients living in the community: the
relationship between needs and subjective quality of life. Social Psychiatry & Psychiatric
Epidemiology, 34(10), 513-518.
Bray, C. O.
(2005). The relationship between psychosocial attributes, self-care resources,
basic need satisfaction and measures of cognitive and psychological health of
adolescents: A test of the Modeling and Role-modeling theory. The University of Texas Graduate School
of Biomedical Sciences at Galveston, Ph.D.
Buizza, C.,
Schyulze, B. Bertocchi, E., Rossi, G., Ghilardi, A. & Pioli, R. (2007). The
stigma of schizophrenia from patients’ and relatives’ view: A pilot study in an
Italian rehabilitation residential care unit.
Clinical Practice and Epidemiology in Mental Health, 3-23.
Burns,
B. J. (2001). Letter in reply to a
critique of the effectiveness of Assertive Community Treatment. Psychiatric Services, 52(10),
1394-1395. Cadena,
S. (2006). Living among strangers: The needs and functioning of persons with
schizophrenia residing in an assisted living facility. Issues in Mental
Health Nursing, 27, 25-41. Clinton, M.,
Lunney, P., Edward, H., Weir, D. & Barr, J. (1998). Perceived social support and community adaptation in
schizophrenia. Journal of Advanced
Nursing, 27, 955-965.
Connolly, M. &
Kelly, D. (2005). Lifestyle and physical health in schizophrenia. Advances in Psychiatric Treatment, 11, 125-132.
Deegan,
P. E. (1996). Recovery and the Conspiracy of Hope. Presented at: The Sixth
Annual Mental Health Services Conference of Australia
and New Zealand, Brisbane, Australia. Dixon, L.
(2000). Assertive Community Treatment:
Twenty-five years of gold. Psychiatric Services, 51(6), 759-765. Dixon, L.,
Postrado, L., Delahanty, J. Fischer, P. J. & Lehman, A. (1999). The
association of medical comorbidity in schizophrenia with poor physical and
mental health. Journal of Nervous and Mental Disease 187, 496-502. Drake,
R. E. & Deegan, P. E. (2007). Are Assertive Community Treatment and
Recovery Compatible? Commentary on “ACT
and Recovery: integrating evidence-based practice and recovery orientation on
Assertive Community Treatment Teams”.
Community Mental health Journal . Published online: 14 December 2007. http://www.springerlink.com.gate.lib.buffalo.edu/content/d108x40761103520/fulltext.html.
Retrieved 5/9/2009.
Dunn,
E. C., Wesiorski, N. J., & Rogers, E. S. (2008). The meaning and importance
of employment to people in recovery from serious mental illness: Results of a
qualitative study. Psychiatric
Rehabilitation Journal, 32(1), 59-62.
Ellis, R., Wilson, N. Foster, F. (1984). Statewide treatment outcome assessment
in Colorado: The Colorado Client Assessment Record (CCAR).
Community Mental Health Journal, 20(1), 72-89.
Erickson, H. (2006).
Modeling and Role-Modeling: A View from the Client’s World. Cedar Park, TX: Unicorns Unlimited.
Erickson,
H., Tomlin, E., & Swain, M. (1983). Modeling and Role-Modeling: A theory
and paradigm for nursing. Englewood Cliffs,
NJ: Prentice-Hall, Inc.
Grinshpoon, A. & Ponizovsky,
A. (2008). The relationships between need profiles, clinical symptoms,
functioning and the well-being of inpatients with severe mental disorders. Journal
of Evaluation in Clinical Practice 14(2), 218-225. Hansell, N. (1976). The Person-in-Distress: On the Biosocial
Dynamics of
Adaptation.
New York: Human Sciences Press. Happnell, B.
(2008). Determining the effectiveness of mental health services from a consumer
perspective: Part 1: Enhancing recovery.
International Journal of Mental Health Nursing, 17, 116-122. Harvey, C.,
Jeffreys, S. E., McNaught, A. S., Blizard,R.A. & King, M.B. (2007). The Camden Schizophrenia
Surveys III: Five-year outcome of a sample of individuals from a prevalence
survey and importance of social relationships. International Journal of
Social Psychiatry, 53(4), 340-356.
Huguelet, P., Mohr,
S., Borras, L. Gillieron, C. & Brandt, P-Y. (2006). Spirituality and
religious practices among outpatients and their clinicians. Psychiatric
Services, 57(3), 366-372.
Hyman, S. E.
& Insel, T. R. (2007). Commentary: Public Health Contributions. Schizophrenia Bulletin,
33(5), 1151-1152. Jacobson, N.
& Greenley, D. (2001). What is recovery? A conceptual model and
explication. Psychiatric Services,
52(4), 482-485. Kovess, V., de
Almeida Jose, M. C., Carta, M., Dubuis, J., Lacalmontie, E., Pettet, J. et al.
2005). Professional team’s choices of intervention towards problems and needs
of patients suffering from schizophrenia across six European countries. European
Psychiatry 20, 521-528. Krauss, J. &
Slavinsky, A. (1982). The Chronically Ill Patient and the Community. Boston, MA: Blackwell
Scientific Publishers. Lauder,
W., Sharkey, S. and Mummery, K. (2004) A community survey of loneliness. Journal of Advanced Nursing 46:1, 88-94.
Lehman, A. &
Linn, L. (1984). Crimes against
discharged mental patients in board-and-care homes. American Journal of
Psychiatry, 141, 271-274.
Leucht, S.,
Burkard, T., Henderson, J., Maj, M., & Sartorius, N. (2008). Physical illness and
schizophrenia: A review of the literature.
Acta Psychiatrica Scandinavica, 116(5), 317-333. Lysaker, P.
& Buck, K. (2006). Moving toward recovery within clients’ personal
narratives: directions for a recovery-focused therapy. Journal of Psychosocial Nursing and
Mental Health Services, 44(1), 28-35. Marder, S.
(2005). Schizophrenia and recovery: an expert interview with Stephen R.
Marder. Medscape Psychiatry &
Mental Health, 10(1). Retrieved 3/15/2005 from http://www.medscape.com/viewarticle/500512?src=mp.
Maslow, A.
(1970). Motivation and Personality (Rev. Edition.). New York: Harper
& Brothers.
McCreadie, R.
Stevens, H., Henderson, J., Hall, D., McCaul, R., Filik, R. et al. (2009). The
dental health of patients with schizophrenia.
Acta Psychiatrica Scandinavica, 110(4), 306-310. McGorry, P. D.
(2005). Royal Australian and New Zealand College of Psychiatrists’ clinical
practice guide-lines for the treatment of schizophrenia and related disorders. Australian
and New Zealand Journal of Psychiatry, 39, 1-10. McGrew, J. H.,
Bond, G. R., Dietzen, M., McKasson, M. & Miller, L. D. (1995). A multisite
study of client outcomes in assertive community treatment. Psychiatric Services, 46, 696-701.
Mohr, S. &
Huguelet, P. (2004). The relationship between schizophrenia and religion and
its implications for care. Swiss
Medical Weekly, 134(25-26), 369-376.
Perese, E. (January/February 1997). Unmet needs of persons with chronic mental illnesses: Relationship to their
adaptation to community living. Issues
in Mental Health Nursing, 18(1), 18-34.Perese,
E., Wu, Y-W, & Ram, R. (2004). Effectiveness of Assertive Community
Treatment for patients referred under Kendra’s Law: Proximal and distal
outcomes. The International Journal
of Psychosocial Rehabilitation, 9(1), 5-9. Phillips,
S. D., Burns, B. J. Edgar, E. R., Muesser, K. T., Linkins, K. W., Rosenheck, R.
A. et al. (2001). Moving assertive community treatment into standard practice. Psychiatric
Services, 52(6), 771-779. Ramon,
S., Healy, B. & Renouf, N. (20007). Recovery from mental illness as an
emergent concept and practice in Australian and the UK. International
Journal of Social Psychiatry, 53, 108-122.
Recovery
(2003). New York State Office of Mental Health News Letter, p.9.
Rosenheck, R., Leslie, D., Keefe, R., McEvoy, J., Swartz,
M., Perkins, D. et al. 2006). Barriers to employment for people with
schizophrenia. American Journal of
Psychiatry, 163, 411-417.
Rosse, R. & Deutch, S. (2000). Use of the Global
Assessment of Functioning
(GAF) Scale in the VHA:
Moving toward improved precision. Veterans Health System Journal, May,
50-58.
Roe, D. &
Chopra, M. (2003). Beyond coping with mental illness: Toward personal
growth. American Journal of
Orthopsychiatry, 73(3), 334-344. Salokangas,
R. (2007). Medical problems in schizophrenia patients living in the community
(alternative facilities). Current Opinion in Psychiatry, 20, 402-405. Salyers,
M. P. & Tsemberis, S. (2007) ACT and recovery: integrating evidence-based
practice and recovery orientation on Assertive Community Treatment teams. Community
Mental Health Journal, 43, 619-641.
Spaniel, L.,
Gagne, C. et al. (2003). The recovery framework in rehabilitation: Concepts and
practices from the field of serious mental illness. In: J. J. R. Finch & D.
Moxley (Eds.). Source Book of Rehabilitation and Mental Health Services, pp.
37-50. New York: Plenum.
Social
Connectedness: Social Report 2008 (2008). Ministry of Social Development. http://www.socialreport.msd.govt.nz/social-connectedness. Retrieved on 9 17 2009.
Stolovy, T.,
Lev-Wiesel, R., Adiel, D. et al. (2009). The meaning in life for hospitalized
patients with schizophrenia. The
Journal of Nervous and Mental Disease, 197(2), 133-135. Teplin, L. A.,
McClelland, G. M., Abram, K. M. & Weiner, D. A. (2005). Crime victimization
in adults with severe mental illness: Comparison with the National Crime
Victimization Survey. Archives of General Psychiatry, 62(8), 911-921. Tepper, L.,
Rogers, S. A., Coleman, E. M. et al. (2001). The prevalence of religious coping
among persons with persistent mental illness.
Psychiatric Services, 52, 660-665. Torrey, E. F.
(1988). Surviving Schizophrenia: A Family Manual. New York: Harper
and Row.
Van Os, J.
(2009). Schizophrenia treatment: Content versus delivery. Acta Pschiatrica
Scaninavica, supplementum (438), 29-32. Ware, N. C.,
Hopper, K., Tugenberg, T., Dickey, B., & Fisher, D. (2007). Connectedness
and citizenship: redefining social integration. Psychiatric Services, 58(4),
469-474. Wheaton, P. (1997) Friendship centres. The Journal of the California Alliance for
the Mentally III, 44-45.