Mental health for family members
ALTHOUGH THE CONCEPT of recovery from mental illness is not a new development, the introduction of a second generation of neuroleptic medications has resulted in increased reporting of this phenomenon in the literature. The opportunity for recovery may become more of a reality for many. However, Metlzer, (1998) and Sheitman and Lieberman, (1998) reported that 20% of consumers with schizophrenia are estimated to be nonresponders even to the new generation of medications.
Recovery not only implies alleviation of the influence of psychotic symptoms but reengaging in seeking a meaningful life. Recovery is often a complex, time consuming process. In 1993, Anthony, from his work with consumers of mental health services offered, a definition of recovery as “ …a deeply personal, unique process of changing ones’ attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful and contributing life even with limitations caused by illness. Recovery involves the development of new meaning and purpose in ones’ life as one grows beyond the catastrophic effects of mental illness”. (p. 15). From a consumer’s perspective, Patricia Deegan (1996) eloquently suggested that “recovery does not mean cure. Rather recovery is an attitude, a stance and a way of approaching the day’s challenges. It is not a perfectly linear journey. There are times of rapid gains and disappointing relapses. There are times of just living, just staying quiet, resting and regrouping. Each person’s journey of recovery is unique.” (pp. 96–97).
Although families are often the greatest source of support for their relative who suffers from severe mental illness, their perspective on the recovery process is less known. This qualitative study sought to examine the role that medication played in the families’ subjective experience of improvement of psychosis as a step in the recovery process. Parallel research examined the consumers’ experience (Forchuk et al. in press) and the staff experience (Forchuk et al 2003a and Forchuk et al 2003b).
Literature review
For several decades there has been considerable literature describing the burden that a relative with severe mental illness places on the family. More recently, families have begun to share with researchers their experiences of a relative’s recovery from psychosis after the introduction of a second generation neuroleptic medication. These studies have shown that both the illness and changes in the illness have an impact not only on the patient but also on the family.
Several early qualitative studies looked at families’ experiences as family members with schizophrenia started taking the second generation neuroleptics. The earliest was Conley and Baker (1990) who described three families who experienced difficulties when their relative began to show improvement. Their relative became angry with them and this resulted in mutual withdrawal as they were not used to their relative’s more demonstrative expression of emotion. Mason, Gingerich, and Siris (1990) also reported on the stress experienced by care providers when new medications produced improvement in psychotic, depressive, or negative symptoms. This altered the status quo and called for changes in interactive processes. Both these early studies called for increased psychosocial interventions and support to assist all parties to successfully manage this phase of their relative’s improvement.
Several studies described family changes. Meltzer, H., 1992. Dimensions of outcome with clozapine. British Journal of Psychiatry 160 Suppl 17, pp. 46–53. View Record in Scopus | Cited By in Scopus (144)Meltzer in 1992, reported outcome measures for 54 patients following one year of clozapine treatment. Families reported feeling less anxious, greater social freedom and lesser financial demands. Kotcher and Smith (1993), in a nonexperimental report of their experience of treating over 40 patients, described phase-specific reactions of patients and their families and suggested phase-specific interventions to maintain collaborative working relationships. Stebbin, in her 1995 exploratory descriptive study with a convenience sample of 10 Michigan families reported that while some families were pleased with the clinical outcomes they anguished over the balance of benefits and limiting side effects of clozapine. Their expectations became more realistic as time passed during the course of treatment. Families expressed a need for an informal or formal source of emotional support to cope effectively with their family member’s clozapine therapies.
A few qualitative studies described the positive changes that occurred for family members as their relative improved from psychosis (Dickson et al 1995 and Najarian 1995). These highlighted improved family functioning and needs for support.
Recent studies have looked at the experience of family members throughout the illness trajectory. Karp and Tanarugsachock (2000) interviewed 50 family members in an ethnographic study. Family members were found to go through predictable phases. The early frustration, as the family member was diagnosed, evolved into grief and sadness. As the lack of control over the illness was recognized, family members reached a stage of acceptance, but also a withdrawal that included respect for the family member’s struggle.
Tags: Family members