Living With Schizophrenia: A Family Perspective

Posted 04/18/2005

Noreen Brady PhD, RN, CNS, LPCC; Gail C. McCain PhD, RN, FAAN; The Sarah Cole Hirsh Institute for Best Nursing Practices

of the Case Western Reserve University Frances Payne Bolton School of Nursing

Abstract and Purpose

Abstract

The lifetime emotional, social, and financial consequences experienced by individuals with schizophrenia have significant

effects on their families. Family responses to having a family member with schizophrenia include: care burden, fear and

embarrassment about illness signs and symptoms, uncertainty about course of the disease, lack of social support, and

stigma. Study findings about families in which parents are hostile, critical, or overly involved are equivocal about whether

this negative environment contributes to patient relapse. This review summarizes the studies related to the family

responses and emotional environment of families who have a member with schizophrenia.

Purpose

Symptoms of the condition diagnosed as schizophrenia usually first appear when an individual is an adolescent or young

adult. The course of the young person's life is forever changed at this time. Frightening experiences, such as hearing voices

or seeing people and scenes that seem real but are not; feeling threatened by dangerously powerful but unknown forces;

losing the ability to concentrate, remember, and follow the topic in normal conversations or a TV show; as well as losing

the "will" or energy to accomplish activities of daily living, are often expressions of this condition. Trying to cope with these
experiences often results in behaviors leading to social isolation and withdrawal, and interferes with individual

development and family life. While 20 to 25% of those diagnosed with schizophrenia will experience remission, about 50% of

affected adolescents or young adults will continue to have persistent or intermittent symptoms.

Although newer medications contribute to some optimism related to prognosis, few of these individuals will overcome

significant cognitive, interpersonal, and occupational deficits. Over time, most will assume the social role of chronic

mental patient. About 10 to 15 % of individuals diagnosed with schizophrenia will eventually commit suicide, often within

the first ten years of illness (Melzter, 2001; Pillmann, Balzuweit, Haring, Bloink, & Marneros, 2003). The lifetime emotional,

social, and financial consequences experienced by individuals with schizophrenia have significant effects on their families.

The purpose of this review is to describe the state of the research evidence about families who have an adult member with

schizophrenia, and to make recommendations for nursing practice to improve care for these families.

Search Strategy

Research evidence from 1990 through February, 2004 was located through searches of MEDLINE (666 manuscripts), CINAHL

(106), PsycINFO (20 manuscripts), and Social Work Abstracts (33 manuscripts). Key search terms were schizophrenia, family,

and behavior. This review focuses on families' experiences of living with a member diagnosed with schizophrenia. The

research related to family interventions in the case of schizophrenia is beyond the scope of this review and is not included.

There are a total of 63 research reports from 1990 to 2004 and additional references to seminal works included in this

review.

Symptoms of Schizophrenia

Positive and negative symptoms may be conceptualized as one continuum of symptoms (Andreasen & Olsen, 1982), or as a

dichotomy of subtypes of symptoms (Crow, 1989). As one continuum, positive symptoms anchor one end of the continuum

and negative symptoms anchor the opposite end (Andreasen & Olsen). As a dichotomy, positive and negative symptoms are
unique constructs with differing pathology and prognoses (Crow). Positive symptoms are thought to be related to

dopaminergic neural transmission abnormalities, while negative symptoms are seen as consequences of gross structural

brain abnormalities, such as ventricular enlargement and larger ventricle to brain ratio, and associated with a greater

genetic disposition). The positive symptoms such as severe thought disorders, allucinations, and delusions are initially more

overtly noticeable and bizarre than negative symptoms. These positive symptoms are responsive to neuroleptic medications

to the extent that some normal activities of life may be resumed. Negative symptoms such as lack of energy, speed,

volition, and poverty of speech are initially less noticeable and are less responsive to neuroleptic medication. These

negative symptoms are more intractable to treatment and may contribute to lifelong disability. Related cognitive deficits

also have been identified and associated with schizophrenic symptomatology.

Research findings indicate a more optimistic prognosis for medication and/or treatment adherent individuals diagnosed

with schizophrenia who exhibit positive symptoms, and a more pessimistic outlook for persons with schizophrenia who

exhibit negative symptoms, even if the individuals adhere to medication and/or treatment plans. Unfortunately, an

enduring state of deficit, or negative symptoms, is associated with poorer outcomes, more severe positive symptoms, lower

levels of social adjustment, and poorer quality of life.

Self-reports about having schizophrenia are almost uniformly negative. Persons diagnosed with schizophrenia often exist in

a world of uncertainty and threat due to symptoms such as altered sensory perceptions and false beliefs. Altered

perceptions were difficult for those afflicted to describe, but most reports include heightened perceptual acuity and

distortion of some aspects of the environment. The impact of cognitive deficits also is generally reported. Abilities to

remember and concentrate decrease, and organization of thought and speech become more difficult. Multiple stimuli
become overwhelming and stress increases. Time becomes distorted, events become jumbled, and planning a sequence of

activities becomes impossible.

Persons diagnosed with schizophrenia have reported that their first psychiatric hospitalizations were extremely traumatic.

Most reports include a continuing, powerful, negative influence of this initial hospitalization, regardless of how far in the

past. The initial hospitalization's impact is especially negative if seclusion or physical restraint was required. In a composite

case study, Cohen (1994) likens the experience to captivity-induced trauma, in which terror, loss of self-autonomy, and total

helplessness are involved. Describing frequent hospitalizations, Leete (1987) notes, "During my late teens and early 20's,

when my age demanded that I date and develop social skills, my illness required that I spend my adolescence on psychiatric

wards. To this day, I mourn the loss of those years" (p.487).

One of the greatest sources of pain reported by persons with schizophrenia is the loss of personal identity as a normal

person. This is a gradual process and is usually accompanied by the painful acquisition of the role of "schizophrenic" or

"mental patient". Acquiring the role of mental patient is especially difficult during adolescence, a stage when peer

acceptance is crucial. Lopez (1991) found three-quarters of normal adolescents considered the mentally ill to be

unpredictable and erratic. She also discovered adolescents would reject any hypothetical social or personal involvement

with a psychiatrically-labeled adolescent patient, even if the normal adolescent's attitude was benign toward schizophrenic

persons in general. Thus, social isolation from peers and withdrawal from the environment, as well as internal responses to

symptoms, may intensify the pain of an altered identity during the transition to the role of schizophrenic or "mental

patient."

Family Responses from Westernized Countries

The family has been portrayed as a negative, toxic influence on the family member diagnosed with schizophrenia in much

of the psychiatric and family literature. In fact, parents and parental relationships have been frequently identified as the

cause of the initial psychotic episode, as well as later relapse. Much of this literature focused on the emotional climate of
the family and the family home environment.

Many family reports of the caregiving burdens of living with someone with schizophrenia are negative. The uncertain course

of the disease, disturbing behavior, loneliness, lack of external support from other than family members, lack of reciprocity

in relations with the patient, continual grieving for the member's lost potential, and fear of unpredictable mood changes

including violent outbursts, are identified as problems by family members of chronic patients.

The basis of family reaction to their relative's schizophrenia-associated symptoms often was rooted in how the family

interpreted these symptoms. Families reported the most distressing symptoms exhibited by the relative with schizophrenia

to be related to negative symptomatology, such as lack of energy, lack of purposeful activity, and a generalized

unresponsiveness. Families often attributed these negative symptoms to their ill relative's personality and perceived

character flaws, unaware that these negative symptoms are characteristic symptoms of schizophrenia. Often families

thought that the member with schizophrenia's symptomatic behaviors were purposely designed to aggravate, annoy, or

provoke other family members.

Additionally, parents, spouses, and siblings are often unable to deal with their own individual or family developmental

needs because the focus is so often on the relative with schizophrenia and sequelae of the illness. Siblings and parents are

often embarrassed by the symptoms and behaviors of the ill member and avoid bringing others to the home. Most studies

have found a relationship between negative family environments and relapse (Hooley & Campbell, 2002; Weisman,

Nuechterlein, Goldstein, & Snyder, 2000; King & Dixon, 1995; Stirling et al., 1993), while only one study did not (King,

2000). In Brady's (2004) recent study, mothers expressed painful memories of having been accused of causing schizophrenia
in their children. The mothers worried about their sons' fates after their own deaths. Marital discord, divorce, and feeling

trapped in an unhappy marriage were related to having adult offspring with schizophrenia (Brady). Thus, normal social

interactions that are instrumental in building and keeping a social network for all members are often precluded in families

with a member labeled schizophrenic.

Much of the difficulty that families face with an adult child labeled mentally ill centers around conflicting functions of both

caring for the child and acting as an agent of social control. In western culture, parental care is expected for the child, but

not after a certain age. For families with children who are diagnosed with schizophrenia, successful "launching" of a young

adult never happens. In a society that values hard work, individual initiative, and independence, the person with

schizophrenia is often seen in an unsympathetic light. Negative symptoms such as lack of initiative, motivation, and

inability to study or work effectively, are often seen as laziness or a desire to remain dependent on family or society.

Deficits in social role performance on the part of the ill family member were the greatest factor contributing to family care

burden. However, family burden has been associated with both positive and negative symptoms. The family must attempt

to enforce social norms of hygiene and behavior on the frequently uncooperative ill member. Often the ill family member

denies the diagnosis of schizophrenia, and the need for continued treatment, as well as the need to comply with socially

accepted norms of hygiene.

Expressed Emotion

Concern with the emotional climate of the home and its influence on the family member with schizophrenia began in the

1950s. Therapists working with families who had an identified member with schizophrenia noted unclear, confusing, and

conflicting communication patterns in family sessions (Bateson, Jackson, Haley, & Weakland, 1981; Haley, 1981; Schaffer,

Wynne, Day, Ryckoff, & Halperin, 1962). These patterns were viewed as reflecting dysfunctional family structures and

relationships, and were thought to contribute to the development and persistence of schizophrenia-associated symptoms in

the ill family member. In addition to unclear and ambiguous communication, these families were perceived to have a

culture of shared denial of feelings and to be overly involved or "enmeshed" with each other. Early researchers also noted
that families who had a member with schizophrenia had exceptionally weak generational boundaries.

Concepts such as Expressed Emotion (EE), and Communication Deviance also were proposed to represent characteristics of

deviant family emotional climate. Seminal studies by Brown and colleagues, and Vaughn and Leff indicated relapse rates

four times higher for patients with schizophrenia who were discharged to parents who were hostile, critical, or overly

involved, compared to patients whose parents who did not behave this way. The differences were found regardless of social

factors and patients' symptoms. Family tolerance of expressions of feelings and problems, as well as less conflict in the

home, also were found to be associated with better patient adjustment and decreased relapse (Spiegel & Wissle, 1986).

Emotional Climate: Measurement

The majority of studies on family emotional climate have focused on expressed emotion, a measure of hostile, critical, or

overly involved parental attitudes toward the patient, measured by the Camberwell Family Interview (CFI) (Vaugh & Leff,

1976) The CFI requires extensive training to learn and takes approximately 90-minutes to administer. The Five Minute

Speech Sample (FMSS) is a shorter tool and measures the same concepts (Shimodera, et al., 1999). Both the CFI and the

FMSS result in a categorical dichotomous variable thought to represent the family environment (i.e. high or low expressed

emotion). Some have used the Family Environment Scale (FES) instead of the CFI, citing ease of administration, scoring, and

increased validity to determine the emotional quality of the home environment (Moos & Moos, 1994). Schnur and colleagues

( 1986) suggest the FES's conflict score may be analogous to the CFI's critical comments, and that an inverse relationship

may exist between the CFI's emotional over-involvement and the FES's expressiveness scores.

Emotional Climate: Studies from 1990-2004

Few studies have focused on the effect of EE in families with a member who has a diagnosis of recent-onset schizophrenia

(Bachmann et al., 2002; Stirling et al., 1991, Stirling et al., 1993). Studies that have focused on EE are presented in Table

2 . Stirling and colleagues' (1991) initial study did not find an association between high Family EE and relapse rates. A

follow-up study eighteen months later did find a significant association between high family EE and relapse rates. In the

follow-up study, 10 of 11 patients from high EE families relapsed, compared to 7 of 19 patients from low EE households. The

studies are considered significant because they suggest a possible developmental course for EE within families related to

the stresses of living with a family member with schizophrenia. However, Bachmann and colleagues (2002) failed to find

differences in EE between relatives of first episode patients and those with a chronic diagnosis of schizophrenia. The

assumption that negative parental attitudes create a toxic environment for the family member with schizophrenia ignores

the reciprocal transaction between the family member and the parents. Family friction, disruption, social embarrassment

from psychotic behavior, stigma, worry, guilt, and depression were frequently cited as examples of negative effects on

parents and other family members (Angermeyer, Schultze, & Dietrich, 2003; Schene, van Wijngaarden, & Koeter, 1998;

Oldridge & Hughes, 1992).

It is not clear what accounts for high EE among families. High EE in families has been associated with: (a) parental

disengagement and less connectedness (McCreadie, Williamson, Athawes, Connolly, & Tilak-Singh, 1994; Wuerker, Fu, Haas,

& Bellack, 2002; Wuerker, Haas, & Bellack, 2001), (b) attribution of control over illness to patients (Harrison, Dadds, &

Smith, 1998; Weisman et al., 1998, 2000), (c) patient symptoms of aggression and hostility (Hall & Docherty, 2000; King,

2000; Rosenfarb, Goldstein, Mintz, & Nuechterlein, 1995), and (d) greater care burden (Barrowclough & Parle, 1997;

Scazufca & Kuipers, 1996, 1998; Smith, Birchwood, Cochrane, & George, 1993). Only one study did not find a relationship

between negativity on the part of relatives and severity of patient symptoms (Sayers et al., 1995). Despite this one study,

there is evidence that both family and patient characteristics play a part in EE.

Thus, rather than a cause of relapse, parental attitudes toward the patient may be part of a more complex and dynamic

phenomenon reflected in the family emotional environment. Expressed Emotion has been identified and quantified in

residential care operators, and has been reflected in the evaluations residents with schizophrenia make about their

environments using the Family Environment Scale (FES) (Moos & Moos, 1994). Results indicated that home operators were
generally less critical, less hostile, and less overly involved compared to family members. However, in cases where high EE

was found in the residential care homes, patient symptomatology was higher and quality of life was poorer than low EE

homes (Snyder, Wallace, Moe, & Liberman, 1994). These findings suggest that persons with schizophrenia may be sensitive

to emotional climate characteristics, and that this sensitivity is not limited only to family emotional environments. In

addition, relapse rates for individuals labeled "chronic schizophrenic" are, with few exceptions, consistently higher in high

EE families than low EE families, independent of symptom severity, duration of illness, or medication compliance

(Miklowitz, 1994; Stricker, Schulze, Monking, & Buchkremer, 1997). Despite recent attempts toward a more interactive,

reciprocal view of family relationships and family emotional climate, negative family emotional climates continue to be

regarded as a potential contributing factor to the symptoms of schizophrenia.

There is little evidence about whether EE is experienced in the same manner among American minority groups as it is for

Caucasians. In general, lower rates of EE have been reported among Mexican-American families compared to Caucasian

families (Kopelowicz et al., 2002; Weisman, Gomes, & Lopez, 2003). Furthermore, high EE family environments did not

predict relapse for Mexican-Americans as it did for Caucasians (Kopelowicz et al.).

For the most part, studies reviewed on emotional climates lacked a clearly articulated, comprehensive, theoretical

framework. Overall, family dynamics have been studied from a perspective of dysfunction and pathology. The most

commonly studied concept was EE in which the number of critical, hostile, or over-intrusive comments by the primary

caregiver was counted. The time frames for collecting data on emotional climate were varied in these studies. Additionally,

family climates were evaluated in some studies prior to hospitalization and in other studies post discharge. Communication

deviance also has been used as a measure to identify negative family environments. This concept is defined as unclear or
incomplete messages and excessive speech rates that result in poor understanding on the part of the receiver. There is

some evidence that communication deviance is greater for parents of offspring with schizophrenia (Docherty, 1993).

Communication deviance is associated with patients' symptom severity and relapse (Velligan et al., 1996; Velligan,

Funderburg, Giesecke, & Miller, 1995), and with high EE (Docherty, 1995).

That relapse and re-hospitalization are negative results of a toxic family emotional climate also may be a flawed

assumption. In cases where the family climate is negatively charged, relapse and re-hospitalization may not be perceived as

negative by the individuals diagnosed with schizophrenia and their families. Patients with schizophrenia may benefit from

the less emotionally-charged environment of a psychiatric hospital, while family members may view re-hospitalization as a

respite from the stresses of living with a symptomatic family member.

Family Responses and Expressed Emotion Studies: Non-Westernized Countries

Unlike family studies from western countries, findings from Asian, African, and Middle Eastern countries suggest that some

positive aspects are associated with living with a family member who has schizophrenia. Schwartz and Gidron (2002) found

that Israeli parents reported satisfaction from their care giving roles for their ill relatives. Additionally, Yamashita (1996)

found that Japanese couples reported feeling increased closeness and support resulting from care giving activities.

However, families in other studies reported similar stresses and care burden as found in the family reports from

westernized countries (Wong & Lok, 2002; Rungreangkulkij & Chesla, 2001; Srinivasan & Thara, 2001; Karanci, 1995; Salleh,

1994; Shibre et al., 2001).

Similar to western countries, higher levels of EE among Israeli and Japanese families were associated with higher relapse

rates for the family members with schizophrenia compared to those from low EE families (Marom, Munitz, Jones, Weizman,

& Hermesh, 2002; Mino et al., 1998; Tanaka, Mino, & Inoue, 1995). The popular belief is that families in under-developed

rural areas have less negative attitudes toward the mentally ill, and that the less negative attitudes are protective against

relapse. In contrast to this, others reported that urban Chinese family members expressed more warmth and positive
remarks to their ill relatives than rural families (Ran, Leff, Hou, Xiang, & Chan, 2003).

Summary

The condition labeled schizophrenia is a severe mental illness incorporating the worst of both acute and chronic illnesses.

Individuals with this condition experience frightening and inexplicable symptoms that may or may not respond to anti-

psychotic medication, even when the individual takes prescribed medication on a regular basis. Family members are

frightened and confused by their family members' strange new beliefs or behaviors, decreased energy levels, loss of

motivation, or cessation of usual activities. Marital and sibling relationships are severely tested in response to the

symptoms of schizophrenia. Most often families do not know how best to respond to these changes in their family member

with schizophrenia, and need guidance and direction.