" Our lives begin to end when we remain silent about things that matter "

... Dr Martin Luther King

M ental I llness Concerns All carers

Living With Schizophrenia: A Family Perspective

Family Responses From Westernized Countries

The family has been portrayed as a negative, toxic influence on the family member diagnosed with schizophrenia in much of the psychiatric and family literature. In fact, parents and parental relationships have been frequently identified as the cause of the initial psychotic episode, as well as later relapse. Much of this literature focused on the emotional climate of the family and the family home environment.

Many family reports of the caregiving burdens of living with someone with schizophrenia are negative (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).

This editor adds the extemely sensitive reaction by negative schizophrenia to criticism - checking on progrees and the priority to which attention is given, which seems [ and is ] to be a reproach - ... " an example.

G is taken by volunrtary transport to a day ocupation. The driver calls about 9.15. Care calls up to G at 8.45 breakfast is ready - ten to nine . G gets dresesd follows a roiutine which has to be got through first - washing to be put in the laundry - bed to be remade - at 9.05 carer says better leave that - have your breakfast first . car will be here soon." Carer is anxious that this day 'break' needs to go well - anxious themselves about G not being ready for the transport - that he will then be upset - the busines of getting ready will put him off from the commitment to keep going with the occupational break. So it goes Carer is 'hurrying him ' .. Another exasmple of how interrupting G when he is set in an intention. G has a routine of collectig the post - it arrives shortly before he is due to go out on another break , the preparation for that being preceded by a cup of tea, which carer makes. G arrives with three items of post 1. a jiffy bag 2. a postcard [ which his sister sends fairly regularly ] 3. a letter for carer. G points to the address on the jiffy bag reading out the name which he is also pointing to which is the carer name - to carer a superflouous gesture. At the same time G is handing the pc out to carer and immediately withdrawing it, , and saying at the same time we should have a cup of tea. Carer moves a litle way off to make the tea. " I,ll make the tea then " G withdraws muttering " sod off then " ... G had not pursued and has not been able to finish off his intentions .. to clear his decks .

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. 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).

It is not clear what accounts for high EE among families.

High EE in families has been associated with: (a) parental disengagement and less connectedness (McCreadie, Williamson, Athawes, Connolly, & Tilak-Singh, 1994; Wuerker, Fu, Haas, & Bellack, 2002; Wuerker, Haas, & Bellack, 2001),

(b) attribution of control over illness to patients (Harrison, Dadds, & Smith, 1998; Weisman et al., 1998, 2000),

(c) patient symptoms of aggression and hostility (Hall & Docherty, 2000; King, 2000; Rosenfarb, Goldstein, Mintz, & Nuechterlein, 1995),

and (d) greater care burden (Barrowclough & Parle, 1997; Scazufca & Kuipers, 1996, 1998; Smith, Birchwood, Cochrane, & George, 1993).

Only one study did not find a relationship between negativity on the part of relatives and severity of patient symptoms (Sayers et al., 1995). Despite this one study, there is evidence that both family and patient characteristics play a part in EE. Thus, rather than a cause of relapse, parental attitudes toward the patient may be part of a more complex and dynamic phenomenon reflected in the family emotional environment. Expressed Emotion has been identified and quantified in residential care operators, and has been reflected in the evaluations residents with schizophrenia make about their environments using the Family Environment Scale (FES) (Moos & Moos, 1994).

L Results indicated that home operators were generally less critical, less hostile, and less overly involved compared to family members. However, in cases where high EE was found in the residential care homes, patient symptomatology was higher and quality of life was poorer than low EE homes (Snyder, Wallace, Moe, & Liberman, 1994).

These findings suggest that persons with schizophrenia may be sensitive to emotional climate characteristics, and that this sensitivity is not limited only to family emotional environments. In addition, relapse rates for individuals labeled "chronic schizophrenic" are, with few exceptions, consistently higher in high EE families than low EE families, independent of symptom severity, duration of illness, or medication compliance (Miklowitz, 1994; Stricker, Schulze, Monking, & Buchkremer, 1997).

Despite recent attempts toward a more interactive, reciprocal view of family relationships and family emotional climate, negative family emotional climates continue to be regarded as a potential contributing factor to the symptoms of schizophrenia. There is little evidence about whether EE is experienced in the same manner among American minority groups as it is for Caucasians. In general, lower rates of EE have been reported among Mexican-American families compared to Caucasian families (Kopelowicz et al., 2002; Weisman, Gomes, & Lopez, 2003).

Furthermore, high EE family environments did not predict relapse for Mexican-Americans as it did for Caucasians (Kopelowicz et al.).

For the most part, studies reviewed on emotional climates lacked a clearly articulated, comprehensive, theoretical framework. Overall, family dynamics have been studied from a perspective of dysfunction and pathology.

The most commonly studied concept was EE in which the number of critical, hostile, or over-intrusive comments by the primary caregiver was counted. The time frames for collecting data on emotional climate were varied in these studies. Additionally, family climates were evaluated in some studies prior to hospitalization and in other studies post discharge.

Communication deviance also has been used as a measure to identify negative family environments. This concept is defined as unclear or incomplete messages and excessive speech rates that result in poor understanding on the part of the receiver. There is some evidence that communication deviance is greater for parents of offspring with schizophrenia (Docherty, 1993). Communication deviance is associated with patients' symptom severity and relapse (Velligan et al., 1996; Velligan, Funderburg, Giesecke, & Miller, 1995), and with high EE (Docherty, 1995).

That relapse and re-hospitalization are negative results of a toxic family emotional climate also may be a flawed assumption. In cases where the family climate is negatively charged, relapse and re-hospitalization may not be perceived as negative by the individuals diagnosed with schizophrenia and their families. Patients with schizophrenia may benefit from the less emotionally-charged environment of a psychiatric hospital, while family members may view re-hospitalization as a respite from the stresses of living with a symptomatic family member.


Family Responses and Expressed Emotion Studies: Non-Westernized Countries

Unlike family studies from western countries, findings from Asian, African, and Middle Eastern countries suggest that some positive aspects are associated with living with a family member who has schizophrenia (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).

 

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.


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