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Article Excerpt
The onset of schizophrenia in the family has been described as "a disaster in which all are victims of the event and its sequelae" (Terkelsen, 1987, p. 128). Early signs of the illness often occur during late adolescence or early adulthood when the child is often still living with his or her parents, especially for males. Females tend to have a later onset, often in their mid-20s (Hambrecht, Maurer, Hafner, & Sartorius, 1992). Schizophrenia is one of the most common of the major mental illnesses, with an overall 1% lifetime risk across cultures (Birchwood & Jackson, 2001; Jablensky, 1995). The illness can present with a range of positive symptoms, such as hallucinations, delusions, bizarre behaviors, and marked disorders of thinking, as well as negative symptoms, such as social withdrawal, impairment of attention, lack of energy, poverty of speech, or a blunting of drive or emotions (Andreasen, Roy, & Flaum, 1995). ("Positive" symptoms refer to "new behaviors that are clearly abnormal," and "negative" symptoms refer to symptoms that reflect "the loss of normal functions"; Pennington, 2002, p. 209.) It is well recognized that prolonged negative symptoms, especially when they persist over a number of years, result in a great emotional burden on the family and are associated with an increased likelihood of a poor prognosis (Birchwood & Jackson, 2001).
Despite the recognition that the illness results in enormous stress in the family, relatively few studies have focused on the experience of parenting an adult child with schizophrenia, and in particular the experiences of fathers. Early research implicated mothers (Fromm-Reichmann, 1948; Hajdu-Gimes, 1940) and, later, fathers and mothers in the etiology of schizophrenia (Bateson, Jackson, Haley, & Weakland, 1956; Lidz, Cornelison, Fleck, & Terry, 1957). These early theories implying parental responsibility have significantly contributed to the blame and guilt that have all too often characterized the relationships between parents of children with schizophrenia and mental health professionals (J. M. Atkinson & Coia, 1995; Terkelsen, 1987). Although it has been suggested that "when professionals blame mental illness on poor parenting, mothers take the majority of the blame" (Milliken, 2001, p. 160), fathers also have been implicated in their child's difficulties, in their interactions with their child, and in their relationship with their spouse.
There is strong evidence to indicate that the development of schizophrenia has a genetic component (Pennington, 2002). Recent studies have drawn attention to the possible roles of neurochemical processes and structural brain abnormalities (Pennington, 2002). However, the etiology of schizophrenia is not well understood (Birchwood & Jackson, 2001). With an emphasis on the biopsychosocial nature of schizophrenia, the vulnerability-stress model (Zubin & Spring, 1977) has gained some support. This model proposes that psychosocial stresses influence underlying vulnerability factors resulting in the emergence or exacerbation of psychotic symptoms.
Both quantitative and qualitative studies have contributed to the field's current understanding of the impact of schizophrenia on family members. For example, Brown, Birley, and Wing (1972) found a positive correlation between expressed emotion (critical comments, hostility, and emotional over-involvement) among family members, and the frequency of relapse in the family member who has schizophrenia. These findings have led to the assumption by many mental health professionals that families with high levels of expressed emotion "reflect[s] a stressful family situation that precipitates acute psychotic relapse in the schizophrenic family member and interferes with rehabilitative efforts" (Kanter, Lamb, & Loeper, 1987, p. 376). However, contrary to this assumption, in a recent quantitative study using a cross-lagged, panel analysis focused on examining the direction of influence between symptom severity in 29 adults with schizophrenia and the expressed emotion of their mothers, King (2000) found that expressed emotion appeared to be the effect of symptom severity rather than its cause. These findings further underscore the need for a greater understanding of the impact of schizophrenia on the family.
Further insight into the experiences of living with a family member who has schizophrenia was provided in a mixed methods study by Jones (1997), who explored the caregiver burden of 143 family caregivers, using telephone interviews and the Caregiver Burden Instrument constructed by Tessler (1989; Tessler & Gamache, 1994). The findings of this study suggested that individuals in various family roles experience subjective burden (a concept introduced by Hoenig & Hamilton, 1966) somewhat differently, an important consideration when seeking to understand the experience of fathers. The dominant subjective burdens voiced by the parental participants in Jones's study resulted from the weariness associated with the long-term commitment to providing care, the ever present concern about the future when they would no longer be able to provide for their child's needs, as well as feelings of guilt associated with having been blamed for causing their child's illness. The largely qualitative research (Chesla, 1991; Crisanti, 2000; Howard, 1998; Milliken, 2001; Nystrom & Svensson, 2004; Osborne & Coyle, 2002; Pauch, 1996; Pfeiffer, 2001; Ryan, 1993; Thorpe, 1994; Tuck, du Mont, Evans, & Sharpe, 1997) has contributed to a greater and richer understanding of the parenting experience than was possible with previous methods by giving voice to parents as they told their stories in their own language.
The few studies that have included both mothers and fathers (Chesla, 1991; Milliken, 2001; Tuck et al., 1997) have drawn attention to forms of parental caregiving, the impact of the diagnosis on the parental experience, and the changing nature of parental roles over the course of the illness. In one of the earliest studies, Chesla, using a hermeneutic phenomenological approach with 21 parental caregivers, reported that although both mothers and fathers were represented in engaged, conflicted, and managed forms of caregiving, only fathers were represented in the distanced form of caregiving--characterized by a dependence on the child's mother to provide the direct care the child needed. Tuck et al. (1997), in their phenomenological study of the experience of 9 primary caregivers (2 fathers and 7 mothers), described the impact of the diagnosis of schizophrenia as "a destructive force that interrupts and radically transforms the normative family life trajectory" (p. 118). Caregiving after the diagnosis, for the parents in their study, was characterized by endless caring and learning to live with constantly changing levels of hope and despair. In her study of the experience of 29 parental caregivers, Milliken drew attention to the changing nature of parental roles over the course of their child's illness. Using a grounded theory approach, she described a process of "redefining parental identity" (Milliken, 2001, p. 149), which included becoming marginalized and disenfranchised as a parent; becoming involved with other parents in a support group; becoming actively involved in volunteer work; and, finally, refocusing on themselves and their own needs.
Studies that have specifically addressed the experience of mothers of adult children with schizophrenia provide a springboard for questions about the experience of fathers. The studies (Pauch, 1996; Ryan, 1993; Thorpe, 1994) have drawn attention to the contradictory nature of mothering an adult child with schizophrenia, the "interminable" nature of the mothering experience, the support needs of mothers, mothering as a return to patterns of mothering when the child was young, as well as the nature of grief and loss as experienced by mothers.
A thorough review of the research literature revealed only three studies that specifically focused on the experience of fathers of adult children with schizophrenia (Howard, 1998; Nystrom & Svensson, 2004; Pfeiffer, 2001). Many of the fathers who participated in these studies were moved to the point of tears as they told their stories (Howard, 1998; Pfeiffer, 2001). One father described his experience as "a life-crushing event" (Howard, 1998, p. 409). Similar descriptions voiced by other fathers suggest that fathers of children diagnosed with schizophrenia may be profoundly affected by their experiences.
In the first of these three studies, Howard (1998) used a qualitative naturalistic method with semistructured interviews to explore the caregiving involvement of 12 fathers of adult children with schizophrenia whose wives were reportedly the primary caregivers of their children. These fathers described themselves as caregiver helpers involved in "direct monitoring of the child during times of crisis and following hospitalizations; and assisting in decisions about medical treatment, education, work, and housing" (Howard, 1998, p. 406). The ongoing concerns voiced by these men involved finances, stressful disruptions in the life of the family caused by the illness, the struggle to give quality time to family members who are well,...
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