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Living with Schizophrenia: A Family Perspective

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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

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.

Citation: Brady, N., McCain, G. (November 29, 2004) "Living with Schizophrenia: A Family Perspective" OJIN: The Online Journal of Issues in Nursing. Vol. 10 No. 1.

DOI: 10.3912/OJIN.Vol10No01HirshPsy01

Key words: schizophrenia, family, behavior, expressed emotion, mental illness

Purpose


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

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.


While 20 to 25%...will experience remission, about 50%...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. The 63 family studies from 1990 to 2004 are detailed in Tables 1, 2, and 3.

Symptoms of Schizophrenia


Persons diagnosed with schizophrenia often exist in a world of uncertainty and threat due to symptoms such as altered sensory perceptions and false beliefs.

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 (Andreasen & Olsen; Pogue-Geile & Harrow, 1984; Sommers, 1985), and associated with a greater genetic disposition (Dworkin & Lezenweger, 1984; Seidman & Wencel, 2003). The positive symptoms such as severe thought disorders, hallucinations, 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 (Cornblatt, Lenzenweger, Dworkin, & Erienmeyer-Kimling, 1985; Saykin, Shtasel, & Gur, 1994; McGurk & Meltzer, 2000).

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 (Mueser, Douglas, Bellack, & Morrison, 1991).

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 (Cutting & Dunne, 1989; Hatfield, 1989; Leete, 1987). 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 (Cutting & Donne; Hatfield).


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

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" (Bouricus, 1989; Brekke, Levin, Wolkon, Sobel, & Slade, 1993; Estroff, 1989; Lally, 1989). 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 (see Table 1) focused on the emotional climate of the family and the family home environment.

Table 1. >>> Family Responses to Schizophrenia

Author(s), Publication date

Study type*

Sample size, important character-istics

Intervention
/Procedure

Results

Country

Brady, 2004

Qualitative

n = 14 family members from 6 families (4 mothers, 4 sisters, 6 members with schizophrenia )

Individual interviews
Construction of family portrait based on identified themes

- Common family experiences: living with uncertainty, loss, sacrifice (especially mothers), & mis-understanding
- Enduring & transcending difficulties by recreating social roles

USA

Angermeyer, Schultze, & Dietrich, 2003

Qualitative

n = 122 relatives of individuals with schizophrenia

Focus group interviews

- Relatives reported social discrimination and disadvantages in social interactions and social roles
- Psychiatrists identified as a source of stigma

Germany

Espina, Ortego, Ochoa de Alda, & Gonzalez, 2003

Descriptive (comparative)

n = 140 married couples: 67 of children with schizophrenia 41 couples without pathology

Dyadic Adjustment Scale Beck Depression Inventory
Self-Rating Anxiety Scale

- Couples with a schizophrenic child had significantly worse dyadic adjustment than controls
- Mothers of children with schizophrenia had higher anxiety and depression than controls

Spain

Holzinger, Kilian, Lindenbach, Petscheleit, & Angermeyer, 2003

Qualitative

n = 100 individuals with schizophrenia and 36 relatives

Interviews

- Patients and relatives reported psychosocial stress as a cause of schizophrenia

Germany

Saunders & Byrne, 2002

Qualitative

n = 26 family members caring for individuals with schizophrenia

Written comments from family members

- Experience of caring for a family member with schizophrenia includes: psychological distress, wish to control behavior problems, legal system difficulties, need for social support, and wish for collaborative role with mental health professionals

USA

Boye et al., 2001

Descriptive

n = 50 relatives of patients with schizophrenia

General Health Questionnaire (GHQ)
Perceived Family Burden Scale (PFBS)
Administered at the patient's hospital admission, 4.5 and 9 months post-discharge

- Relatives distress related to their report of problematic patient behaviors, especially anxious and depressed behaviors

Norway

Czuchta & McCay, 2001

Descriptive

n = 20 parents of individuals with schizophrenia

Social Response Questionnaire
Thresholds Parental Burden Scale
Mishel Uncertainty in Illness Scale-Parent/Child form

- Stigma and stress reported to increase the burden of care giving
- Increased parental education decreased uncertainty about schizophrenia

Canada

Martens & Addington, 2001

Descriptive

n = 41 family members of individuals with schizophrenia

Experience of Caregiving Inventory (ECI)

- Family members reported significant distress

Canada

Milliken, 2001

Qualitative – Grounded Theory

n = 29 parent caregivers of adults with schizophrenia

Interviews

- Feelings of disenfran-chisement as child's schizophrenia develops into adulthood, i.e. parental rights not recognized to assume responsibility for their child
- Disenfran-chisement results in stress, guilt, grief, physical illness

Canada

Friedrich, Lively, & Buckwalter, 1999

Descriptive

n = 30 adult siblings of individuals with schizophrenia

Impact of Illness Behaviors Scale and an open-ended question to explore impact of illness behaviors

- Most disturbing behaviors: disruption of household routine (96%), hallucina-tions, delusions, unpredictable embarrassing behavior in public (90%), side effects of medications (86%), negative symptoms, (86%)

USA

Hinrichsen & Lieberman, 1999

Descriptive

n = 63 family members caring for individuals with a first episode of schizophrenia

Interview

- Poor emotional adjustment of family members was associated with: patient's psychiatric problems being attributed to moral failings or psycholo-gical problems from an earlier life, avoidant coping, conflict avoidance, and author-itarianism

USA

Brown & Birtwistle, 1998

Longitudinal

n = 179 individuals with schizophrenia living with their families in 1981-82

Interview

- 22% of patients were dead, 3% lost to follow-up, 55% living with families, 23% institutional-ized, 19% living alone, 2% homeless
- No change over 15 years in caregiver distress

Australia

Howard, 1998

Qualitative

n = 12 fathers of grown children with schizophrenia

Interviews

- Fathers unresolved issues included: slighting other children, future care, disrupted family life, & financial concerns

USA

Magliano et al., 1998

Descriptive

n = 236 relatives of individuals with schizophrenia

Family Problem Questionnaire
Family Coping Questionnaire
Social Network Questionnaire

- Family burden related to constraints on social activities, negative effects on family life, and feelings of loss
- Most common coping strategies were positive communica-tion with patient and involving patient in family/ social activities

Italy

Rose, 1998

Qualitative

n = 9 relatives of individuals with schizophrenia or bipolar disorders

Focus group interviews

- Family members described feeling stuck and stressed by dealing with signs & symptoms of illness
- Criticism from therapists was regarded as non supportive

USA

Schene, van Wijngaarden, & Koeter, 1998

Descriptive

n = 480 members of a Dutch family organization for individuals with schizophrenia
/chronic psychosis

Involvement Evaluation Questionnaire (IEQ)

- Caregiving included: tension, supervision, worrying, urging strongly related to the patient's symptoms

Netherlands

Bibou-Nakou, Dikaiou, & Bairactaris, 1997

Descriptive, Correlational

n = 52 family caregivers of 31 individuals with  chronic schizophrenia (diagnosed over 2-years) & 21 diagnosed < 2-years

Fadden's Interview of Burden
General Health Questionnaire

- Both groups of caregivers reported distress
- Deficits in social role performance on the part of the relative was the greatest factor related to family burden

UK

Greenberg, Kim, & Greenley, 1997

Descriptive

n = 164 adult siblings of  individuals with severe mental illness (68% with schizophrenia)

Wisconsin Family Burden and Services Questionnaire via a 90-minute telephone interview

- Burden was greater when: 1) ill siblings were more symptomatic, 2) well siblings attributed greater control of symptoms to ill siblings
- Stigma & fear were greatest for well siblings of individuals with schizophrenia compared to other illnesses

USA

Stricker, Schulze Monking, & Buchkremer, 1997

Descriptive

n = 99 families of outpatients diagnosed with schizophrenia according to DSM-III criteria

Munster Family Interview

- Family resignation predicted rehospital-ization, symptom expression, and poor social skills
- Family criticism predicted symptom expression
- Family over-involvement predicted poor social functioning

Germany

Mueser, Webb, Pfeiffer, Gladis, & Levinson, 1996

Descriptive

n = 48 relatives of individuals with schizophrenia or bipolar disorder

Non-standardized questionnaires to assess relatives' burden related to problem behaviors

- Manic symptoms more burdensome for relatives of patients with bipolar disorder
- Burden associated with positive and negative symptoms reported by both groups

USA

Anonymous, 1994

Case study

A husband with schizophrenia

First person account of living with a husband diagnosed with schizophrenia

- Family life negatively affected by husband's paranoia, delusional ideas, hostility, & verbal abuse
- Friendships were lost due to husband's behavior
- Life was a "constant state of anxiety" due to husband's unpredictable behavior

USA

Winefield & Harvey, 1994

Descriptive

n = 121 family caregivers of individuals with schizophrenia who had been diagnosed an average of 14 years

Interviews

- Burden defined as interference in family & social relationships
- 51% of caregivers' total stress was attributed to having a family member with schizophrenia
- Majority critical of mental health professionals.
- Expressed need for professional help and information.

South Australia

Gerace, Camilleri, & Ayres, 1993

Qualitative

n = 14 adult siblings of individuals with schizophrenia

Interviews

- Healthy siblings felt stigma and burden from responsibility for their ill siblings and parents
- Some reported family dysfunction including parental alcoholism and abuse

USA

Oldridge & Hughes, 1992

Descriptive

n = 24 family caregivers of individuals with long-term schizophrenia

Interviews
General Health Questionnaire

- Caregivers had twice the prevalence of health problems and depression than the general population

UK

Birchwood & Cochrane, 1990

Descriptive

n = 53 individuals with schizophrenia and their relatives

Interviews

- Acceptance, collusion, & constructive coping styles associated with perceived control, less burden, & the individual with schizophrenia having better social functioning
- Disorganized coping styles associated with less perceived control, more felt stress, & the individual with schizophrenia having high levels of behavior disturbance

UK

 

Many family reports of the caregiving burdens of living with someone with schizophrenia are negative (Czuchta & McCay, 2001; Martens & Addington, 2001). 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 (Boye et al., 2001; Brown & Birtwistle, 1998; Gerace, Camilleri, & Ayres, 1993; Holzinger, Kilian, Lindenbach, Petscheleit, & Angermeyer, 2003; Howard, 1998; Magliano et al., 1998; Rose, 1998; Saunders & Byrne, 2002; Winefield & Harvey, 1994).

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 (Bibou-Nakou, Dikaiou, & Bairactaris, 1997; Hinrichsen & Lieberman, 1999; Weisman, Nuechterlein, Goldstein, & Snyder, 1998). 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 (Hooley & Campbell, 2002).

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 (Anonymous, 1994; Brady, 2004; Espina, Ortego, Ochoa do Alda, & Gonzalez, 2003; Friedrich, Lively, & Buckwalter, 1999; Greenberg, Kim, & Greenley, 1997). 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.


For families with children who are diagnosed with schizophrenia, successful "launching" of a young adult never happens.

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 (Reinhard, 1994; Milliken, 2001). 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 (Bibou-Nakou et al., 1997; Birchwood & Cochrane, 1990). However, family burden has been associated with both positive and negative symptoms (Mueser, Webb, Pfeiffer, Gladis, & Levinson, 1996). 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) (Brown, Birley, & Wing, 1972; Vaughn & Leff, 1976); Affective Style (Doane, West, Goldstein, Rodnick, & Jones, 1981), and Communication Deviance (Schaffer et al., 1962) 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).

Table 2. >>> Expressed Emotion

Author(s), Publication date

Study type*

Sample size, important character-istics

Intervention
/Procedure

Results

Country

Weisman, Gomes, & Lopez, 2003

Qualitative

n = 24 un-acculturated Latino-American (Mexican, Guatemalan, Salvadoran) caregivers of family members with schizophrenia

Interviews

- 91% of caregivers designated as low EE
- Caregivers have a system of attributions that shift blame for illness & symptoms away from patients

USA

Bachmann et al., 2002

Descriptive

n = 80 relatives of family members with first-episode schizophrenia, chronic schizophrenia, or depression

Five-Minute Speech Sample (critical comments and emotional over involvement)

- No significant difference in EE status between relatives of first-episode patients (52.5% high EE) and chronic patients (45% high EE)
- EE indices equivalent for relatives of family members with first-episode & chronic schizophrenia and depression

Germany

Hooley & Campbell, 2002

Descriptive

35 relatives of family members with schizophrenia & 42 relatives of family members unipolar depression

Campbell Family Interview

- High EE relatives behaved in more controlling manner & these high levels of control predicted relapse at 9-months in family members with schizophrenia, but not for those with depression

UK

Kopelowicz et al., 2002

Descriptive

Key relatives (Caucasian = 17, Mexican-American = 44) of persons with schizophrenia

Level of Expressed Emotion Scale
Five Minute Speech Sample

- Lower rates of high EE among Mexican-American than Caucasians
- High EE predicted relapse for Caucasians but not for Mexican-Americans

USA

Wuerker, Fu, Haas, & Bellack, 2002

Descriptive

n = 71 relatives of persons with schizophrenia

Five Minute Speech Sample
Family Problem-Solving Task/Coded with Relational Control Coding System

- Parents, especially those with high EE, of older patients less likely to respond assertively, and this reflects disengage-ment

USA

Wuerker, Haas, & Bellack, 2001

Descriptive

n = 62 families of persons with schizophrenia

Interviews
Five Minute Speech Sample/ Relational Control Coding System

- High EE relatives become distant & less connected with each other

USA

Hall & Docherty, 2000

Descriptive

n = 44 parents of patients with schizophrenia

Camberwell Family Interview Strategic Approach to Coping Scale

- No differences in coping between high & low EE parents
- Parents with assertive coping styles who have aggressive offspring are more critical of their sons & daughters

USA

King, 2000

Descriptive

28 patients with schizophrenia & their mothers

Brief psychiatric Rating Scale (patients)
Camberwell Family Interview (mothers)

- EE in mothers not associated with patient symptom exacerbation
- Mothers' greater emotional over involvement associated with less hostility in patients
- Patients' hostile uncoopera-tiveness associated with increased critical comments by mothers

Canada

Weisman, Nuechterlein, Goldstein, & Snyder, 2000

Descriptive

n = 35 family members of patients with recent-onset schizophrenia

Camberwell Family Interview
(Pairs of high and low EE relatives from the same family were compared)

- High EE relatives attributed more control over illness behavior to patients than low EE relatives of the same patients
- Low EE relatives from high-EE families attributed more illness behavior control to patients than low EE relatives from low EE families

USA

Harrison, Dadds, & Smith, 1998

Descriptive

n = 84 caregivers of patients with schizophrenia

Interviews

- Three variables significantly predicted caregivers' criticism of patients: smaller proportion of negative symptoms in patient's overall symptom pattern, low level of knowledge about illness, attributing cause of negative symptoms to patient's personality rather than to illness

Australia

Scazufca & Kuipers, 1998

Descriptive

n = 36 relatives of patients with schizophrenia at hospital discharge & 9-months post discharge

Camberwell Family Interview
Social and Behavior Assessment Schedule (Adverse Effects on Others' section)

- 23 relatives had no change in EE, 9 relatives changed from high to low EE , & 4 relatives changed from low to high EE from hospital discharge to 9-months after
- Relatives who changed from high to low EE had the greatest reduction in burden at 9-months, followed by relatives whose EE did not change
- Relatives who changed from low to high EE reported more burden at 9-months

England

Weisman, Nuechterlein, Goldstein, & Snyder, 1998

Descriptive

n = 40 Anglo-American family members of patients with schizophrenia

Camberwell Family Interview

- High EE relatives viewed illness & symptoms within patients' control compared to low EE relatives
- Negative symptoms (e.g. poor hygiene) were criticized more than positive symptoms (hallucina-tions)

USA

Barrowclough & Parle, 1997

Descriptive

n = 63 relatives of persons with schizophrenia

Camberwell Family Interview General Health Questionnaire

- Relatives with sustained distress were more likely to have high EE & longer history of care giving

England

Scazufca & Kuipers, 1996

Descriptive

n = 50 patients with schizophrenia & 50 relatives living with or in close contact with patients

Camberwell Family Interview
Social & Behaviour Assessment Schedule for burden (families)
Present State Examination
Social Role Performance Schedule
Social Behaviour Schedule (patients)

- High EE relatives reported higher burden of care, & perceived more deficits in patients' social role performance compared to low EE relatives

England

Velligan et al., 1996

Descriptive

n = 20 patients with schizophrenia & 20 of their relatives

10-minute family discussion of a problem identified by one member

- Parental communica-tion deviance at patient's hospital discharge was associated with patient relapse in the 1-year follow-up period

USA

Docherty, 1995

Descriptive

n = 19 parents of long-term schizophrenia outpatients

Camberwell Family Interview
Communication assessment of a 10-minute audiotaped speech sample on neutral topics

- Parents with high EE had poorer linguistic reference performance (i.e. poorer speech coherence/ comprehen-sibility) and greater speech disorganiza-tion than parents with low EE

USA

King & Dixon, 1995

Descriptive

n = 69 schizophrenia outpatients & 108 relatives

Camberwell Family Interview
Family Adaptability and Cohesion Evaluation Scale (families)
Social Adjustment Scale
Brief Psychiatric Rating Scale (patients)

- Patient relapse was greater in high EE families (51%) compared to low EE families (17%)

Canada

Rosenfarb, Goldstein, Mintz, & Nuechterlein, 1995

Descriptive

n = 48 patients with schizophrenia & their families (34 high EE, 14 low EE)

Camberwell Family Interview
Patient Symptom Profile

- Patients from high EE families showed more odd & disruptive behavior compared to patients from low EE families
- High EE relatives were more likely than low EE relatives to respond with criticism to first unusual thought expressed by patients, thereby increasing a second unusual thought

USA

Sayers et al., 1995

Descriptive

n = 57 patients with schizophrenia & their relatives

Family problem solving task interaction
Independent assessment of social skill
Brief Psychiatric Rating Scale

- Severity of symptoms & patients' social skills were not related to relatives' negativity
- Quality of communica-tion in patient-relative dyad discussions was related to each participant's level of negativity

USA

Velligan, Funderburg, Giesecke, & Miller, 1995

Descriptive

n = 24 patients with schizophrenia & their mothers

Interviews

- Communi-cation deviance is a stable attribute in biological mothers of patients with schizophrenia & communica-tion deviance was related to verbosity
- Commun-ication deviance in mothers was associated with patients' symptoms

USA

Snyder, Wallace, More, & Lieberman, 1994

Correla-tional

n = 15 residential care operators & 30 residents with schizophrenia

Camberwell Family Interview
Five Minute Speech Sample (operators)
Family Environmental Scale
Lehman Quality of Life Scale
Brief Psychiatric Rating Scale

- Home operators had lower EE than family members
- Home operators EE related to residents' QOL & symptom level

Docherty, 1993

Descriptive

n = 10 outpatients with schizophrenia, 18 parents of the outpatients, & 10 non-psychiatric control parents

Ten-minute conversational speech samples (for communica-tion deviance)

- Parents of outpatients scored higher on communica-tion deviance than control parents

USA

McCreadie, Williamson, Athawes, Connolly, & Tilak-Singh, 1994

Descriptive

n = 50 adult patients with schizophrenia & their parents

Camberwell Family Interview

- No association between parental EE & patients' perceived parental rearing attitudes
- Parents with high EE were more rejecting related to child rearing attitudes compared to parents with low EE

Scotland

Smith, Birchwood, Cochrane, & George, 1993

Descriptive

n = 49 family members living with or in close contact with a patient with schizophrenia

Camberwell Family Interview
The Knowledge Questionnaire
Family Distress Scale
Symptom Related Behaviour  
Disturbance Scale
Symptom Rating Test
Social Function Scale

- High EE relatives reported more burden & less ability to cope
- There were no differences between high  & low EE relatives related to understanding the illness and stress symptoms
- Patients from low EE families had a higher level of interpersonal functioning

UK

Stirling et al. 1993

Descriptive

Relatives of 30 patients, mainly with schizophrenia

Camberwell Family Interview

- 10 of 11 patients in high EE families relapsed & 7 of 19 in low EE families relapsed at 18-months follow-up

UK

Stirling et al., 1991

Correla-tional

n = 33 relatives of patients with schizophrenia at first hospitalization

Interviews at admission & at 12 months follow-up

- No association between family EE levels and relapses

USA

 

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.


...rather than a cause of relapse, parental attitudes toward the patient may be a part of a more complex and dynamic phenomenon reflected in the family emotional environment.

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.


That relapse and re-hospitalization are negative results of a toxic family emotional climate also may be a flawed assumption.
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 (see Table 3). 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).

Table 3. >>> Studies from Asia, the Middle East, and Africa

Author(s), Publication date

Study type*

Sample size, important character-istics

Intervention
/Procedure

Results

Country

Ran, Leff, Hou, Xiang, & Chan, 2003

Descriptive

n = 71 family members of individuals with schizophrenia
49.3% from rural area
50.7% from urban area  
M age = 36 yrs, M illness duration = 8 yrs

Mandarin Chinese version of the Camberwell Family Interview (CFI) for EE

- Low level of EE predominated (72% rated low EE)
- Relatives used fewer critical comments and less emotional over involvement (EOI) than respondents in similar Western studies
- Urban residents expressed more
warmth, positive remarks, and EOI than rural residents

China

Marom, Munitz, Jones, Weizman, & Hermesh, 2002

Descriptive

n = 108 family members of individuals with schizophrenia

Five Minute Speech Sample (FMSS) administered to relatives at the time of an ill family member's hospital admission, discharge and 6 months post-discharge

- High EE was associated with higher rates of readmissions, shorter time to readmission, and a more severe illness course
- Strongest predictor of shorter time to readmission was interaction of high criticism and poor compliance with medication

Israel

Schwartz & Gidron, 2002

Descriptive

n = 93 parents (80 mothers, 13 fathers) caring for an adult son or daughter with schizophrenia

Self-administered questionnaire to explore care giving

- Parents reported satisfaction from performing parental duties
- Satisfaction was unrelated to burden and severity of child's illness

Israel

Wong & Lok, 2002

Qualitative

n = 12 family members of  individuals with schizophrenia

In-depth interviews about family communication patterns

- Lack of knowledge of mental illness, attribution of symptoms to personality causes, and psychological burden were associated with negative communica-tion patterns (hostility and emotional involvement)
- Parental commitment, knowledge of mental illness and recognition of positive attributes were associated with positive communica-tion patterns

Hong Kong, China

Rungreang-kulkij & Chesla, 2001

Phenomen-ology

n = 12 mothers of adult children with schizophrenia

In-depth interviews to explore culturally specific beliefs and patterns of response to children’s symptoms

- Cause of illness attributed to supernatural causes and karma (result of a transgression from a previous life)
- Mothers practiced Thum-jai, translated as acceptance and sense of obligation, to respond to children's symptoms

Thailand

Shibre et al., 2001

Descriptive

n = 178 family members of individuals with schizophrenia

Interview

- 75% reported stigma due to their ill family member
- 37% wished to conceal having a mentally ill family member
- 27% attributed mental illness to supernatural forces
- 65% reported prayer to be the preferred coping method

Rural Ethiopia

Srinivasan & Thara, 2001

Descriptive

n = 254 family members of chronic schizophrenia patients

Interviews about causation of schizophrenia

- Psychosocial stress was reported as most common cause, followed by personality defect, and heredity
- Only 12% believed in supernatural causes

India

Mino et al., 1998

Descriptive

n = 73 family members of individuals with schizophrenia

Japanese version of the CFI administered to relatives during hospitalization of the member with schizophrenia

- 9-months after discharge, living in a high EE family was associated with emotional withdrawal and depression for the family member with schizophrenia

Japan

Yamashita, 1996

Qualitative

n = 14 family members of individuals with schizophrenia

In-depth interviews to describe care giving

- Relatives reported needing support to cope with care giving, but support was lacking from health professionals
- Couples reported coming closer together by supporting each other in care giving
- Mothers who worked fulltime quit or reduced their status to part-time

Japan

Tanaka, Mino, & Inoue, 1995

Descriptive

n = 52 family members of individuals with schizophrenia

CFI administered to relatives
Brief Psychiatric Rating Scale (BPRS) administered to  members with schizophrenia at 9-months follow-up

- Relapse rate, based on BPRS rating of symptoms, was 58% in high-EE families compared to 21% in low-EE families

Japan

Karanci, 1995

Descriptive

n = 60 family members of individuals with schizophrenia

Semi-structured interviews to examine the causal attributions, difficulties, helpfulness of health care professionals

- 50% attributed schizophrenia to psychosocial causes such as stressful events, 40% to family conflicts, 28% to patients' characteristics
- Difficulties included family conflicts and disruptions to family life, care burden, and financial burden
- Professional helpfulness included pharmacolo-gical treatment, interest and support for relative, and hospitaliza-tion of the patient

Turkey

Salleh, 1994

Descriptive

n = 210 family members of schizophrenia patients

Interview about patients' behavior and related burden

- Relatives reported stress and depression
- Number of problem behaviors and previous admissions were positively correlated with severity of burden

Malaysia

 

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.

Recommendations for Practice

When working with families who have members with schizophrenia:

  1. Listen to family care givers and acknowledge and respect the role they play in the life of the member with illness.

  2. Acknowledge the difficulties associated with living with someone with this mental condition. Offer support and understanding at each encounter.

  3. Provide realistic and accurate education about schizophrenia including diagnostic criteria, current treatment strategies, and prognosis. Use correct terminology and provide thorough explanations using lay language.

  4. Assure that family members understand the nature of both positive and negative symptoms. Clarify any misinterpretations of negative symptoms as personality or character flaws.

  5. Remind family members to care for themselves as individuals and to maintain other significant relationships.

  6. Encourage parents to discuss their ill member's symptoms and behaviors with their well children. Help parents to explain on an age appropriate level that symptoms are a result of an illness or brain disease and are not deliberate acts. If the well siblings are comfortable, role-play explanations of schizophrenia-associated symptoms to their friends. If bringing friends to the home is a problem, allow well siblings to arrange activities with friends away from the home. Advise parents to try to arrange special individual times and activities with well siblings on a regular basis.

  7. Refer families to the National Alliance for the Mentally Ill (NAMI). This nonprofit organization provides support, education, and advocacy for consumers and families of the mentally ill on local, state, and national levels. Suggest families consider joining a local Alliance for the Mentally Ill (AMI)-sponsored family support group. Information about NAMI including referral to local chapters and support groups may be found on the NAMI website: www.nami.org or by calling 1.800.950.6264. The mailing address is NAMI; Colonial Place Three; 2107 Wilson Blvd., Suite 300; Arlington, VA 22201-3042.

Authors

Noreen Brady PhD, RN, CNS, LPCC
E-mail: Noreen.Brady@Case.edu

Noreen Brady PhD, RN, CNS, LPCC received a bachelor's degree in nursing and a PhD from Case Western Reserve University, and a master's degree in psychiatric nursing from Kent State University in Ohio. This manuscript is related to her recently completed doctoral dissertation about the lives of families who have members with schizophrenia. She is currently an Assistant Professor and Director, Hirsh Institute for Evidence Based Practice at the Frances Payne Bolton School of Nursing, Case Western Reserve University. In addition, Dr. Brady maintains an active practice as an advanced practice nurse with seriously mentally ill clients and their families at Murtis H. Taylor Multi-Service Center, Cleveland, Ohio.

Gail C. McCain PhD, RN, FAAN

Gail C. McCain PhD, RN, FAAN received a master's degree in child health nursing from the State University of New York, Buffalo, a master's degree in sociology from Kent State University, and a PhD from Case Western Reserve University. She holds the Sarah Cole Hirsh Professorship in Nursing and is Associate Dean for Community Affairs at Frances Payne Bolton School of Nursing, Case Western Reserve University.

The Sarah Cole Hirsh Institute for Best Nursing Practices of the Case Western Reserve University Frances Payne Bolton School of Nursing, Cleveland, Ohio, USA
http://fpb.cwru.edu/HirshInstitute

The Hirsh Institute's mission is to build a repository of best nursing practices based on research findings. Institute activities include: disseminating the most current scientific evidence on best nursing practices to clinicians, educators, administrators, and policy makers; guiding nursing research by identifying areas where scientific evidence is lacking; and conducting certificate programs for nursing staff to identify and implement evidence based practice.

Acknowledgement: We thank our Hirsh Institute students, Arax Balian and Bette Idemoto, for their help with database searches and creation of the tables.

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© 2004 OJIN: The Online Journal of Issues in Nursing
Article published November 29, 2004


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