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.
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 | Results | Country |
| Brady, 2004 | Qualitative | n = 14 family members from 6 families (4 mothers, 4 sisters, 6 members with schizophrenia ) | Individual interviews | - Common family experiences: living with uncertainty, loss, sacrifice (especially mothers), & mis-understanding | 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 | 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 | - Couples with a schizophrenic child had significantly worse dyadic adjustment 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) | - 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 | - Stigma and stress reported to increase the burden of care giving | 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 | 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 | 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 burden related to constraints on social activities, negative effects on family life, and feelings of loss | 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 | USA |
| Schene, van Wijngaarden, & Koeter, 1998 | Descriptive | n = 480 members of a Dutch family organization for individuals with schizophrenia | 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 | - Both groups of caregivers reported distress | 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 | 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 | 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 | 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 | 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 | 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 | USA |
| Oldridge & Hughes, 1992 | Descriptive | n = 24 family caregivers of individuals with long-term schizophrenia | Interviews | - 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 | 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).
| | |||||
| Author(s), Publication date | Study type* | Sample size, important character-istics | Intervention | 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 | 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) | 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 | - Lower rates of high EE among Mexican-American than Caucasians | USA |
| Wuerker, Fu, Haas, & Bellack, 2002 | Descriptive | n = 71 relatives of persons with schizophrenia | Five Minute Speech Sample | - 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 | - 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 | USA |
| King, 2000 | Descriptive | 28 patients with schizophrenia & their mothers | Brief psychiatric Rating Scale (patients) | - EE in mothers not associated with patient symptom exacerbation | Canada |
| Weisman, Nuechterlein, Goldstein, & Snyder, 2000 | Descriptive | n = 35 family members of patients with recent-onset schizophrenia | Camberwell Family Interview | - High EE relatives attributed more control over illness behavior to patients than low EE relatives of the same patients | 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 | - 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 | 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 | 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 | - 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 | - 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 | - 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 | - Patients from high EE families showed more odd & disruptive behavior compared to patients from low EE families | USA |
| Sayers et al., 1995 | Descriptive | n = 57 patients with schizophrenia & their relatives | Family problem solving task interaction | - Severity of symptoms & patients' social skills were not related to relatives' 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 | USA |
| Snyder, Wallace, More, & Lieberman, 1994 | Correla-tional | n = 15 residential care operators & 30 residents with schizophrenia | Camberwell Family Interview | - Home operators had lower EE than family members | |
| 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 | 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 | - High EE relatives reported more burden & less ability to cope | 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. |
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 | Results | Country |
| Ran, Leff, Hou, Xiang, & Chan, 2003 | Descriptive | n = 71 family members of individuals with schizophrenia | Mandarin Chinese version of the Camberwell Family Interview (CFI) for EE | - Low level of EE predominated (72% rated low EE) | 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 | 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 | 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) | 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) | Thailand |
| Shibre et al., 2001 | Descriptive | n = 178 family members of individuals with schizophrenia | Interview | - 75% reported stigma due to their ill family member | 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 | 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 | Japan |
| Tanaka, Mino, & Inoue, 1995 | Descriptive | n = 52 family members of individuals with schizophrenia | CFI administered to relatives | - 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 | Turkey |
| Salleh, 1994 | Descriptive | n = 210 family members of schizophrenia patients | Interview about patients' behavior and related burden | - Relatives reported stress and depression | 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:
-
Listen to family care givers and acknowledge and respect the role they play in the life of the member with illness.
-
Acknowledge the difficulties associated with living with someone with this mental condition. Offer support and understanding at each encounter.
-
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.
-
Assure that family members understand the nature of both positive and negative symptoms. Clarify any misinterpretations of negative symptoms as personality or character flaws.
- Remind family members to care for themselves as individuals and to maintain other significant relationships.
- 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.
- 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 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.
Article published November 29, 2004
References
Andreasen, N.C., & Olsen, S. (1982). Negative vs. positive schizophrenia. Archives of General Psychiatry, 39, 789-794.
Angermeyer, M. C., Schulze, B., & Dietrich, S. (2003). Courtesy stigma--a focus group study of relatives of schizophrenia patients. Social Psychiatry and Psychiatric Epidemiology, 38, 593-602.
Anonymous. (1994). First person account: Life with a mentally ill spouse. Schizophrenia Bulletin, 20, 227-229.
Bachmann, S., Bottmer, C., Jacob, S., Kronmuller, K. T., Backenstrass, M., Mundt, C., et al. (2002). Expressed emotion in relatives of first-episode and chronic patients with schizophrenia and major depressive disorder-a comparison. Psychiatry Research, 112, 239-250.
Barrowclough, C. & Parle, M. (1997). Appraisal, psychological adjustment and expressed emotion in relatives of patients suffering from schizophrenia. The British Journal of Psychiatry, 171, 26-30.
Bateson, G., Jackson, D. D., Haley, J., & Weakland, J. H. (1981). Toward a theory of schizophrenia. In R. J. Green & J.L.. Framo (Eds.), Family therapy: Major contributions (pp. 41-68). New York: International Universities Press, Inc.
Bibou-Nakou, I., Dikaiou, M., & Bairactaris, C. (1997). Psychosocial dimensions of family burden among two groups of carers looking after psychiatric patients. Social Psychiatry and Psychiatric Epidemiology, 32, 104-108.
Birchwood, M. & Cochrane, R. (1990). Families coping with schizophrenia: Coping styles, their origins and correlates. Psychological Medicine, 20, 857-865.
Bouricius, J. K. (1989). Negative symptoms and emotions in schizophrenia. Schizophrenia Bulletin, 15, 201-208.
Boye, B., Bentsen, H., Ulstein, I., Notland, T. H., Lersbryggen, A., Lingjaerde, O., et al. (2001). Relatives' distress and patients' symptoms and behaviours: A prospective study of patients with schizophrenia and their relatives. Acta Psychiatrica Scandinavica, 104, 42-50.
Brady, N. (2004). A portrait of families with a member labeled schizophrenia. Unpublished doctoral dissertation, Case Western Reserve University, Cleveland, Ohio.
Brekke, J. S., Levin, S., Wolkon, G. H., Sobel, E. & Slade E. (1993). Psychosocial functioning and subjective experience in schizophrenia. Schizophrenia Bulletin, 19, 599-608.
Brown, G.W., Birley, J. L., & Wing, J.K. (1972). Influence of family life on the course of schizophrenic disorders: A replication. The British Journal of Psychiatry, 121, 241-258.
Brekke, J. S. & Mathiesen, S. G. (1995). Effects of parental involvement on the functioning of noninstitutionalized adults with schizophrenia. Psychiatric Services, 46, 1149-1155.
Brown, S. & Birtwistle, J. (1998). People with schizophrenia and their families. Fifteen-year outcome. The British Journal of Psychiatry, 173, 139-144.
Cohen, L. J. (1994). Psychiatric hospitalization as an experience of trauma. Archives of Psychiatric Nursing, 8, 78-81.
Cornblatt, B.A., Lenzenweger, M.F., Dworkin, R.H., & Erlenmeyer-Kimling, L. (1985). Positive and negative schizophrenic symptoms, attention, and information processing. Schizophrenia Bulletin, 11, 397-408.
Crow, T. J. (1989). A current view of the type II syndrome: Age of onset, intellectual impairment, and the meaning of structural changes in the brain. The British Journal of Psychiatry, 155(Suppl.), 15-20.
Cutting J., & Dunne, F. (1989). Subjective experience of schizophrenia. Schizophrenia Bulletin, 15, 217-231.
Czuchta, D. M. & McCay, E. (2001). Help-seeking for parents of individuals experiencing a first episode of schizophrenia. Archives of Psychiatric Nursing, 15, 159-170.
Doane, J. A., West, K. L., Goldstein, M. J., Rodnick, E. H., & Jones, J. E. (1981). Parental communication deviance and affective style. Predictors of subsequent schizophrenia spectrum disorders in vulnerable adolescents. Archives of General Psychiatry, 38, 679-685.
Docherty, N. M. (1993). Communication deviance, attention, and schizotypy in parents of schizophrenic patients. Journal of Nervous and Mental Disease, 181, 750-756.
Docherty, N. M. (1995). Expressed emotion and language disturbances in parents of stable schizophrenia patients. Schizophrenia Bulletin, 21, 411-418.
Dworkin, R.H., & Lenzenweger, M.A. (1984). Symptoms and the genetics of schizophrenia: Implications for diagnosis. American Journal of Psychiatry, 141, 1541-1546.
Espina, A., Ortego, A., Ochoa de Alda, I., & Gonzalez, P. (2003). Dyadic adjustment in parents of schizophrenics. European Psychiatry, 18, 233-240.
Estroff, S. E. (1989). Self, identity, and subjective experiences of schizophrenia: In search of the subject. Schizophrenia Bulletin, 15, 189-196.
Friedrich, R. M., Lively, S., & Buckwalter, K. C. (1999). Well siblings living with schizophrenia. Impact of associated behaviors. Journal of Psychosocial Nursing and Mental Health Services, 37, 11-19.
Gerace, L. M., Camilleri, D., & Ayres, L. (1993). Sibling perspectives on schizophrenia and the family. Schizophrenia Bulletin, 19, 637-647.
Greenberg, J.S., Kim, H.W., & Greenley, J.R. (1997). Factors associated with subjective burden in siblings of adults with severe mental illness. American Journal of Orthopsychiatry, 67, 231-241.
Haley, J. (1981). The family of the schizophrenic: A model system. In R. J. Green & J. L. Framo (Eds.), Family therapy: Major contributions (pp. 70-104). New York: International Universities Press, Inc.
Hall, M. J., & Docherty, N. M. (2000). Parent coping styles and schizophrenic patient behavior as predictors of expressed emotion. Family Process, 39, 435- 444.
Harrison, C. A., Dadds, M. R., & Smith, G. (1998). Family caregivers' criticism of patients with schizophrenia. Psychiatric Services, 49, 918-24.
Hatfield, A B. (1989). Patients’ accounts of stress and coping in schizophrenia. Hospital and Community Psychiatry, 40, 1141-1145.
Hinrichsen, G. A. & Lieberman, J. A. (1999). Family attributions and coping in the prediction of emotional adjustment in family members of patients with first-episode schizophrenia. Acta Psychiatrica Scandinavica, 100, 359-366.
Holzinger, A., Kilian, R., Lindenbach, I., Petscheleit, A., & Angermeyer, M. C. (2003). Patients' and their relatives' causal explanations of schizophrenia. Social Psychiatry and Psychiatric Epidemiology, 38, 155-162.
Hooley, J. M. & Campbell, C. (2002). Control and controllability: Beliefs and behaviour in high and low expressed emotion relatives. Psychological Medicine, 32, 1091-1099.
Howard, P. B. (1998). The experience of fathers of adult children with schizophrenia. Issues in Mental Health Nursing, 19, 399-413.
Karanci, A. N. (1995). Caregivers of Turkish schizophrenic patients: Causal attributions, burdens and attitudes to help from the health professionals. Social Psychiatry and Psychiatric Epidemiology 30, 261-268.
King, S. (2000). Is expressed emotion cause or effect in the mothers of schizophrenic young adults? Schizophrenia Research, 45, 65-78.
King, S. & Dixon, M. J. (1995). Expressed emotion, family dynamics and symptom severity in a predictive model of social adjustment for schizophrenic young adults. Schizophrenia Research, 14, 121-132.
Kopelowicz, A., Zarate, R., Gonzalez, V., Lopez, S. R., Ortega, P., Obregon, N., et al. (2002). Evaluation of expressed emotion in schizophrenia: A comparison of Caucasians and Mexican-Americans. Schizophrenia Research, 55, 179-86.
Lally, S.J. (1989). Does being here mean there is something wrong with me? Schizophrenia Bulletin, 15, 253-265.
Leete, E. (1987). The treatment of schizophrenia: A patient’s perspective. Hospital and Community Psychiatry, 38, 486-491.
Lopez, L. R. (1991). Adolescent’s attitudes toward mental illness and perceived sources of their attitudes: An examination of pilot data. Archives of Psychiatric Nursing, 5, 271-280.
Magliano, L., Fadden, G., Madianos, M., de Almeida, J. M., Held, T., Guarneri, M., et al. (1998). Burden on the families of patients with schizophrenia: Results of the BIOMED I study. Social Psychiatry and Psychiatric Epidemiology, 33, 405-412.
Marom, S., Munitz, H., Jones, P. B., Weizman, A., & Hermesh, H. (2002). Familial expressed emotion: Outcome and course of Israeli patients with schizophrenia. Schizophrenia Bulletin, 28, 731-743.
Martens, L. & Addington, J. (2001). The psychological well-being of family members of individuals with schizophrenia. Social Psychiatry and Psychiatric Epidemiology,36, 128-133.
McCreadie, R. G., Williamson, D. J., Athawes, R. W., Connolly, M. A., & Tilak-Singh, D. (1994). The Nithsdale Schizophrenia Surveys. XIII. Parental rearing patterns, current symptomatology and relatives' expressed emotion. The British Journal of Psychiatry, 165, 347-352.
McGurk, S.R., & Meltzer, H.Y. (2000). The role of cognition in vocational functioning in schizophrenia. Schizophrenia Research, 45, 175-184.
Meltzer, H.Y. (2001). Treatment of suicidality in schizophrenia. Annals of the New York Academy of Science, 932, 44-58.
Miklowitz, D. J. (1994). Family risk indicators in schizophrenia. Schizophrenia Bulletin, 20, 137-149.
Milliken, P. J. (2001). Disenfranchised mothers: Caring for an adult child with schizophrenia. Health Care for Women International, 22, 149-166.
Mino, Y., Inoue, S., Shimodera, S., Tanaka, S., Tsuda, T., & Yamamoto, E. (1998). Expressed emotion of families and negative/depressive symptoms in schizophrenia: A cohort study in Japan. Schizophrenia Research, 34, 159-168.
Moos, R. H., & & Moos, B. S. (1994). Family environment scale manual (3rd ed.). Palo Alto, CA: Consulting Psychologists Press, Inc.
Mueser, K. T., Douglas, M. S., Bellack, A. S., & Morrison, R. L. (1991). Assessment of enduring deficit and negative symptom subtypes in schizophrenia. Schizophrenia Bulletin, 17, 565-582.
Mueser, K. T., Webb, C., Pfeiffer, M., Gladis, M., & Levinson, D. F. (1996). Family burden of schizophrenia and bipolar disorder: Perceptions of relatives and professionals. Psychiatric Services, 47, 507-511.
Oldridge, M. L. & Hughes, I. C. (1992). Psychological well-being in families with a member suffering from schizophrenia. An investigation into long-standing problems. The British Journal of Psychiatry, 161, 249-251.
Pillmann, F., Balzuweit, S., Haring, A., Bloink, R. & Marneros, A. (2003). Suicidal behavior in acute and transient psychotic disorders. Psychiatry Research, 117, 199-209.
Pogue-Geile, M. F., & Harrow, M. (1984). Negative and positive symptoms in schizophrenia and depression: A followup. Schizophrenia Bulletin, 10, 371-387.
Ran, M. S., Leff, J., Hou, Z. J., Xiang, M. Z., & Chan, C. L. (2003). The characteristics of expressed emotion among relatives of patients with schizophrenia in Chengdu, China. Culture, Medicine and Psychiatry, 27, 95-106.
Reinhard, S.C. (1994). Perspectives on the family’s caregiving experience in mental illness. Image The Journal of Nursing Scholarship, 26, 70-74.
Rose, L. (1998). Benefits and limitations of professional-family interactions: The family perspective. Archives of Psychiatric Nursing, 12, 140-147.
Rosenfarb, I. S., Goldstein, M. J., Mintz, J., & Nuechterlein, K. H. (1995). Expressed emotion and subclinical psychopathology observable within the transactions between schizophrenic patients and their family members. Journal of Abnormal Psychology, 104, 259-267.
Rungreangkulkij, S. & Chesla, C. (2001). Smooth a heart with water: Thai mothers care for a child with schizophrenia. Archives of Psychiatric Nursing, 15, 120-127.
Salleh, M. R. (1994). The burden of care of schizophrenia in Malay families. Acta Psychiatrica Scandinavica, 89, 180-185.
Saunders, J. C. & Byrne, M. M. (2002). A thematic analysis of families living with schizophrenia. Archives of Psychiatric Nursing, 16, 217-223.
Sayers, S. L., Bellack, A. S., Mueser, K. T., Tierney, A. M., Wade, J. H., & Morrison, R. L. (1995). Family interactions of schizophrenic and schizoaffective patients: Determinants of relatives' negativity. Psychiatry Research, 56, 121-134.
Saykin, A. J., Shtasel, D.L., & Gur, R.E. (1994). Neuropsychological deficits in neuroleptic naive patients with first-episode schizophrenia. Archives of General Psychiatry, 51, 124-131.
Scazufca, M. & Kuipers, E. (1996). Links between expressed emotion and burden of care in relatives of patients with schizophrenia. The British Journal of Psychiatry The Journal of Mental Science, 168, 580-587.
Scazufca, M. & Kuipers, E. (1998). Stability of expressed emotion in relatives of those with schizophrenia and its relationship with burden of care and perception of patients' social functioning. Psychological Medicine, 28, 453-461.
Schaffer, L, Wynne, L.C., Day, J., Ryckoff, I. M., & Halperin, A. (1962). On the nature and sources of the psychiatrist’s experience with the family of the schizophrenic. Psychiatry 25, 32-45.
Schene, A. H., van Wijngaarden, B., & Koeter, M. W. (1998). Family caregiving in schizophrenia: Domains and distress. Schizophrenia Bulletin, 24, 609-618.
Schwartz, C. & Gidron, R. (2002). Parents of mentally ill adult children living at home: Rewards of caregiving. Health & Social Work, 27, 145-154.
Seidman, L. J., & Wencel, H.E. (2003). Genetically mediated brain abnormalities in schizophrenia. Current Psychiatry Reports, 5, 135-144.
Shibre, T., Negash, A., Kullgren, G., Kebede, D., Alem, A., Fekadu, A., et al. (2001). Perception of stigma among family members of individuals with schizophrenia and major affective disorders in rural Ethiopia. Social Psychiatry and Psychiatric Epidemiology, 36, 299-303.
Shimodera, S., Mino, Y., Inoue, S., Izumoto, Y., Kishi, Y., & Tanaka, S. (1999). Validity of a Five-Minute Speech Sample in measuring expressed emotion in the families of patients with schizophrenia in Japan. Comprehensive Psychiatry, 40, 372-376.
Smith, J., Birchwood, M., Cochrane, R., & George, S. (1993). The needs of high and low expressed emotion families: A normative approach. Social Psychiatry and Psychiatric Epidemiology, 28, 11-16.
Snyder, K.S., Walllace, C. J., Moe, K. & Liberman, R. P. (1994). Expressed emotion by residential care operators and residents’ symptoms and quality of life. Hospital and Community Psychiatry, 45, 1141-1143.
Sommers, A. A. (1985). "Negative symptoms:" Conceptual and methodological problems. Schizoprhenia Bulletin, 11, 364-379.
Spiegel, D., & Wissler, T. (1986). Family environment as a predictor of psychiatric rehospitalization. American Journal of Psychiatry, 143, 56-60.
Srinivasan, T. N. & Thara, R. (2001). Beliefs about causation of schizophrenia: do Indian families believe in supernatural causes? Social Psychiatry and Psychiatric Epidemiology, 36, 134-140.
Stirling, J., Tantam, D., Thomas, P., Newby, D., Montague, L., Ring, N., et al. (1991). Expressed emotion and early onset schizophrenia: A one year follow-up. Psychological Medicine, 21, 675-685.
Stirling, J., Tantam, D., Thomas, P., Newby, D., Montague, L., Ring, N., et al. (1993). Expressed emotion and schizophrenia: The ontogeny of EE during an 18-month follow-up. Psychological Medicine, 23, 771-778.
Stricker, K., Schulze Monking, H., & Buchkremer, G. (1997). Family interaction and the course of schizophrenic illness. Results of a multivariate prospective study. Psychopathology, 30, 282-290.
Tanaka, S., Mino, Y., & Inoue, S. (1995). Expressed emotion and the course of schizophrenia in Japan. The British Journal of Psychiatry, 167, 794-798.
Vaughn, C. E., & Leff, J.P. (1976). The influence of family and social factors on the course of psychiatric illness. A comparison of schizophrenic and depressed neurotic patients. The British Journal of Psychiatry The Journal of Mental Science, 129, 125-137.
Velligan, D. I., Funderburg, L. G., Giesecke, S. L., & Miller, A. L. (1995). Longitudinal analysis of communication deviance in the families of schizophrenic patients. Psychiatry, 58, 6-19.
Velligan, D. I., Miller, A. L., Eckert, S. L., Funderburg, L. G., True, J. E., Mahurin, R. K., et al. (1996). The relationship between parental communication deviance and relapse in schizophrenic patients in the 1-year period after hospital discharge. A pilot study. Journal of Nervous and Mental Disease, 184, 490-496.
Weisman, A. G., Gomes, L. G., & Lopez, S. R. (2003). Shifting blame away from ill relatives: Latino families' reactions to schizophrenia. The Journal of Nervous and Mental Disease, 191, 574-581.
Weisman, A. G., Nuechterlein, K. H., Goldstein, M. J., & Snyder, K. S. (1998). Expressed emotion, attributions, and schizophrenia symptom dimensions. Journal of Abnormal Psychology, 107, 355-359.
Weisman, A. G., Nuechterlein, K. H., Goldstein, M. J., & Snyder, K. S. (2000). Controllability perceptions and reactions to symptoms of schizophrenia: A within- family comparison of relatives with high and low expressed emotion. Journal of Abnormal Psychology, 109, 167-171.
Winefield, H. R., & Harvey, E. J. (1994). Needs of family caregivers in chronic schizophrenia. Schizophrenia Bulletin, 20, 557-566.
Wong, D. F. K., & Lok, P. W. (2002). Factors influencing expressed emotion found between Chinese caregivers and their relatives with schizophrenia in Hong Kong: a qualitative analysis. Social Work in Mental Health, 1, 61-81.
Wuerker, A. K., Fu, V. K., Haas, G. L., & Bellack, A. S. (2002). Age, expressed emotion, and interpersonal control patterning in families of persons with schizophrenia. Psychiatry Research, 109, 161-170.
Wuerker, A. K., Haas, G. L., & Bellack, A. S. (2001). Interpersonal control and expressed emotion in families of persons with schizophrenia: Change over time. Schizophrenia Bulletin, 27, 671-685.
Yamashita, M. (1996). A study of how families care for mentally ill relatives in Japan. International Nursing Review, 43, 121-125.
