ILLNESS: A LITERATURE REVIEW Jana C. … A LITERATURE REVIEW Jana C. Saunders, PhD, RN, CS Texas...

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Mental Health Nursing TJ662-06 January 13, 2003 14:2

Issues in Mental Health Nursing, 24:175–198, 2003Copyright c© 2003 Taylor & Francis0161-2840/03 $12.00 + .00DOI: 10.1080/01612840390160711

FAMILIES LIVING WITH SEVERE MENTALILLNESS: A LITERATURE REVIEW

Jana C. Saunders, PhD, RN, CSTexas Tech University, Lubbock, Texas, USA

Schizophrenia is a severe mental illness, which is stressfulnot only for patients, but also for family members.Numerous studies have demonstrated that family caregiversof persons with a severe mental illness suffer fromsignificant stresses, experience moderately high levels ofburden, and often receive inadequate assistance frommental health professionals. Effective family functioning infamilies with schizophrenia may be influenced by a varietyof psychosocial factors. The purpose of this article was topresent a review of the social science literature related tofamilies living with schizophrenia that has been publishedduring the last three decades. There is general agreement inthe literature that a multitude of variables affect familieswith a severe mental illness, such as schizophrenia.Therefore, this literature review examined the mostfrequently investigated variables (coping, psychologicaldistress and caregiver burden, social support, caregiverresiliency and depression, and client behavioral problems)as they are related to families and schizophrenia.

Research on families living with a severe mental illness has been doc-umented through various systematic studies, through the impressions ofclinicians who have worked with these families, and through the reportsof families themselves. Individuals with a severe mental illness havetypically been mentally ill for many years and are unable to fulfill rolesin society normally expected of individuals of their age and intellectualability; thus, they are most likely to receive family caregiving. Severe

Address correspondence to Jana C. Saunders, School of Nursing, Texas Tech University,Health Sciences Center, 3601 4th St., Lubbock, TX 79430-6264. E-mail: [email protected]

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mental illness is stressful, not only for patients, but also for family mem-bers. Because individuals with a severe mental illness frequently live athome with family members rather than in institutions, it is a significantfamily concern. Numerous studies have demonstrated that family care-givers of persons with a severe mental illness suffer from significantstresses, experience moderately high levels of burden, and often receiveinadequate assistance from mental health professionals. For familieswho are already confronted with a range of day-to-day problems thataffect all aspects of their lives, a family member with a severe mentalillness may have a significant impact on the entire family system.

LITERATURE REVIEW METHODS

This is a review of the social science literature on severe mental illnessreported between 1970 and 2000 in the following journals:AmericanJournal of Community Psychiatry, American Journal of Orthopsychi-atry, American Journal of Psychiatry, Archives of Psychiatric Nurs-ing, Australian and New Zealand Journal of Mental Health Nursing,British Journal of Psychiatry, Canadian Journal of Psychiatry, Clini-cal Gerontologist, Community Mental Health Journal, ComprehensivePsychiatry, Family Coordinator, Family Perspective, Family Process,Family Relations, Health and Social Work, Health Psychology, Hospi-tal and Community Psychiatry, Image: Journal of Nursing Scholarship,Innovations and Research, International Journal of Family Psychiatry,Issues in Mental Health Nursing,Journal of Abnormal Psychology,Jour-nal of Advanced Nursing, Journal of the American Academy of ChildAdolescent Psychiatry, Journal of Community Psychology, Journal ofHealth and Social Behavior, Journal of Marriage and the Family, Jour-nal of Marital and Family Therapy, Journal of Mental Health, Journalof Psychiatric Treatment and Evaluation, Journal of Psychosocial Nurs-ing and Mental Health Services, Journal on Studies of Alcohol, Nurs-ing Research, Pain, Professional Psychology, Psychological Medicine,Psychiatric Quarterly, Psychiatric Rehabilitation Journal, PsychiatricServices, Psychosocial Rehabilitation Journal, Qualitative Health Re-search, Research in Nursing and Health, Research on Aging, SocialPsychiatry and Psychiatric Epidemiology, Social Science and Medicine,Social Work, andSchizophrenia Bulletin.

All articles related to families and severe mental illness during thespecified time frame were reviewed. The articles were assessed to de-termine the common variables that affect families living with a severemental illness. A number of variables were consistently identified in themore than 400 articles reviewed. Numerous books also were included

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in the literature review based on their significant contribution to theliterature. In this paper, I will focus on the following topics: coping,caregiver burden/psychological distress, caregiver resiliency, caregiverdepression, social support, client behavioral problems, and family func-tioning. Due to the extensive amount of social science research reviewedover three decades, the earlier research is only briefly described, whilethe recent research receives more detailed elaboration.

COPING

McCubbin and Figley (1983) described two categories of stressorsthat apply to the process of coping with mental illness. These are(a) normative stressors, involving transitions throughout the life cycleas family relationships change and family members grow and develop,and (b) catastrophic stressors, striking families suddenly and often over-whelming their ability to cope. Severe mental illness was identified asan example of a catastrophic stressor for the family.

There is a considerable literature base concerned with family stressand coping with severe mental illness. Hatfield (1979) investigatedcoping strategies among families with schizophrenia. Family membersidentified various types of coping resources including lectures, books,friends, relatives, individual therapy, group therapy, clergy, and par-ents of people with schizophrenia. Hatfield (1981) also conducted anexploratory study of family caregivers of relatives with mental illnessover a 30-month period. She found that older and somewhat better edu-cated caregivers were more effective in coping, and that their ill relativestended to be older, to have been ill longer, and to be less functional. Moredifficulty in coping was reported when the relative was functioning ata higher level and was living at home or under family supervision inthe community. Potasznik and Nelson (1984), who examined mediatorsof stress in families coping with mental illness, reported that low levelsof family burden were associated with small social networks, satisfac-tion with support received, satisfaction with support from their self-helpgroup, and spousal involvement.

The Center for Psychiatric Rehabilitation at Boston University hasproduced much research concerned with coping strategies of familieswith severe mental illness. Zipple and Spaniol (1987) described familyadaptation and recovery with mental illness. These researchers identifiedfour categories of coping responses among families: problem oriented,emotional, cognitive, and physical. There were a number of specificcoping strategies within each of these categories such as getting andusing practical advice, developing supports and resources, becoming an

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advocate, joining a support group, enhancing spirituality, sharing prob-lems and feelings with others, exercising, meditating, acquiring infor-mation, and making lifestyle changes. Noh and Turner (1987), in theirinvestigations, found that a sense of personal control was importantin enabling individuals to cope with mental illness in a family mem-ber. Terkelsen (1987) analyzed five factors that influenced the personalmeaning of mental illness for family members: the extent of the fam-ily’s involvement in the daily life of the ill family member; the models ofcausation, symptoms, and outcomes that were assumed by family mem-bers; the natural history of the illness; the personality and life history ofindividual family members; and the social network. He discovered thatthe appraisal process among families who have a member with mentalillness was complex and dynamic, and the meaning of mental illness forfamily members was likely to change over the course of a lifetime.

Lefley (1987) studied coping strategies among mental health profes-sionals who had family members with severe mental illness. Eight copingstrategies were ranked according to how helpful they were. The copingstrategies include: education in symptoms, medication, and knowledgeof the mental illness; specific suggestions dealing with patient behav-iors; involvement with self-help groups; alternative living arrangements;individual or family therapy; relief from financial stress; substitute care-giving so the family can have some time away; and more understandingfrom relatives and neighbors. The findings showed that education, sup-port groups, and alternate living arrangements were rated as more helpfulcoping strategies than individual or family therapy. Fadden, Bebbington,and Kuipers (1987) studied coping strategies used by spouses of personswith a severe mental illness. Their findings showed that the coping strate-gies most frequently used by spouses of persons with a severe mentalillness were wishing the situation would go away or hoping for the de-velopment of a cure someday.

Several studies have focused on adaptive qualities, coping skills, andstrengths of families. Birchwood and Cochrane (1990), who examinedcoping strategies used by relatives of individuals with schizophrenia,found a number of significant relationships among relatives’ specificcoping strategies and behaviors of the patients. Parent coping strategieswere related to their level of expressed emotion exhibited, which inturn affected their relatives’ behavior. Norbeck, Chafetz, Wilson, andWeiss (1991) found that family caregivers of individuals with severemental illness believed that help in locating resources and the availabilityof backup care facilitated or improved their ability to cope. Obtainingspecific information about the mental illness and methods for managingthe family member’s behavior helped them cope as well.

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Coping, caregiver burden, self-esteem, depression, and social supportwere assessed among 24 Black and 185 White parents with severelymentally ill offspring (Pickett, Vraniak, Cook, & Cohler, 1993). Theydiscovered that Black families exhibited higher coping mastery abilityand self-esteem and lower levels of depression. Overall, Black familiesbore the burden of caring for a mentally ill child better than White fam-ilies. Solomon and Draine (1995) found that lower scores on generalmeasures of coping (self-efficacy and mastery over problems) were re-lated to greater subjective burden in families with a relative with a mentalillness. Doornbos’ (1996) descriptive study of 85 families revealed thatfamilies coping with a severe mental illness have significantly morestressors than normative families, but also have clear strengths relatedto family coping, adaptability, and conflict management.

In a preliminary exploratory study, Wintersteen and Rasmussen(1997) found that a group of 25 fathers coping with the mental illnessof an adult child exhibited emotional stress that was largely unrecog-nized and unacknowledged by mental health professionals. In addition,fathers tended to utilize more isolating strategies for coping with theiradult child’s mental illness. Howard (1998) described the lived experi-ence of fathers of adult children with schizophrenia using cross-sectionaldata gathered from 12 fathers over a 2-year period. Practice implica-tions included immediate assessment of fathers, supportive listening,and brief therapy. Doornbos (1997), who studied the problems and cop-ing methods of caregivers of young adults with mental illness, found thatcaregivers struggled with burden, grief, client symptomatology, and anegative impact on their family as a unit. The coping methods includedfacilitative attitudes, reliance on their faith, use of support groups, andincreasing their knowledge of mental illness.

Magliano, Fadden, Economou et al. (1998) explored social and clini-cal factors influencing the choice of coping strategies in 236 relatives ofpatients with schizophrenia, living in five European countries. Problem-focused coping strategies were more frequent among young relativesand among relatives of younger patients. Relatives who had been livinglonger with the patient and who had poor social support more frequentlyadopted emotion-focused strategies. In all countries, relatives experi-enced higher levels of burden when they had poor coping resourcesand reduced social support. In a heuristic inquiry within the context ofNewman’s theory of health as expanding consciousness, Yamashita(1998) reported that families used understanding and acceptance oftheir relative’s schizophrenia as a way of coping with the mental ill-ness. A study of 58 families (Saunders, 1999) providing care for a fam-ily member with schizophrenia revealed that families that used more

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problem-solving strategies and coping behaviors were able to functionmore effectively as a family unit. The most frequently used strategiesby these families were mobilizing resources, seeking spiritual support,reframing, internal patterns, external patterns, passivity, and social sup-port. Hall (2000) examined relationships between levels of expressedemotion in 44 parents of individuals with schizophrenia and the cop-ing strategies they used. Coping strategies were identified as: assertiveaction, social joining, seeking social support, cautious action, instinc-tive action, antisocial action, aggressive action, avoidance coping, andindirect action. The study found that coping was not generally directlyrelated to levels of expressed emotion; however, an interaction betweenparent coping style and patient behavior was found to predict the levelof expressed emotion.

In summary, the findings of the above research studies indicate thatfamilies cope in different ways with the stressor of severe mental illness.The consequences of family efforts to cope may be either positive ornegative. The coping behaviors used may produce additional burdenson the already overtaxed family. On the other hand, some families haveexpressed the belief that coping with mental illness in the family hasmade them stronger persons who are better able to cope with life’strials (Greenburg, Greenley, & Benedict, 1994). Family coping mayinvolve positive actions to eliminate or reduce the number and intensityof demands, to acquire additional resources, to manage the stress ofongoing strains, and to make situations more constructive, manageable,and acceptable for the entire family.

CAREGIVER BURDEN/PSYCHOLOGICAL DISTRESS

By the mid 1970s, burden research was focusing on the relationship ofthe patient with her or his family. Kreisman and Joy (1974) conducted areview of the literature related to the needs and burdens of families withsevere mental illness, which revealed effects of multiple hospitaliza-tions on the family, family burden, family beliefs and attitudes towardthe family member’s “deviance,” and how family attitudes determinefamily functioning. Thompson and Doll (1982) identified the subjec-tive and objective burden of 125 families coping with severe mentalillness after deinstitutionalization. Potasznik and Nelson (1984) foundthat increased satisfaction with social support networks served to de-crease subjective and objective burden. Family caregivers experiencedfewer burdens when their social support networks were small, perceivedas supportive, and their spouse spent a significant amount of time with

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the patient. Crotty and Kulys (1986) reported that the patient’s supportsystem was an important mediator of family burden: Patients with asupport system were less of a burden to their families than patients with-out a support system. Noh and Turner (1987) examined the relationshipbetween family burden and the mental health of family members. Theyreported that burden was a major source of stress, and that mastery of thesituation was found to mediate this stress. In one study during the 1980s,families’ perceptions of “profound” burdens were described throughgroup interviews with 86 family caregivers living with severe mentalillness (Francell, Conn, & Gray, 1988). As families have assumed moreof the caregiver role for members with severe mental illness, high levelsof psychological distress among caregivers have been documented. Re-search on parent caregivers (Cook, 1988) indicated that mothers showedsignificantly more measurable emotional distress (anxiety, depression,fear, emotional drain) than did fathers. It was reported that women’sbehaviors and thoughts were influenced by their primary role as childcaretakers, thereby resulting in a greater emotional investment in thecaregiving roles.

In a sample of caregivers for family members with severe mental ill-ness, Oldridge and Hughes (1992) reported that psychological distress(anxiety, depression, and insomnia) was twice as high as in the generalpopulation. Cook, Hoffschmidt, Cohler, and Pickett (1992) identifiedfactors that influenced marital satisfaction among 131 parents of adultoffspring with severe mental illness. Parents’ ability to comfort eachother, parents’ gender, number of children, family income, and interper-sonal sensitivity were discussed. Mothers-wives reported lower levelsof marital satisfaction than did fathers-husbands. Stress of severe men-tal illness on the family as a whole (social withdrawal, frequent reloca-tion, and unwanted caregiving responsibilities) was documented throughpersonal interviews with siblings and adult children (Marsh, Appleby,Dickens, Owens, & Young, 1993). According to Rolland (1994), in achronic disorder such as severe mental illness, there is increasing strainon family caregivers as a result of exhaustion and the continual additionof new caregiving tasks over time. The family is always “on-call” tocope with the day-to-day crises of severe mental illness. Reinhard andHorwitz (1995), who interviewed 163 parents and siblings of adults withsevere mental illness, discovered that the conception of burden is a conse-quence of dealing with disruptive behaviors and providing instrumentaland emotional assistance. Burden was more related to caregiving respon-sibilities than whether the caregiver lived in the same household withthe ill family member. Provencher (1996) described the negative conse-quences on the family (e.g., physical problems, restrictions in social life,

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tense relationships in the family) as reported by 70 primary caregivers ofpersons with schizophrenia. The most common negative consequenceswere the primary caregiver’s emotional problems, the disturbance inthe caregiver’s performance of work, and the disruption in the lives ofother adults in the household. Telephone interviews were conductedwith 778 family members whose relatives had a severe mental illness(Greenberg, Greenley, & Brown, 1997). The level of psychological dis-tress experienced by family caregivers was lower in those families whoseill family members received more mental health services and whosecaregivers perceived a more collaborative relationship with health careproviders.

Magliano, Fadden, Madianos et al. (1998) examined burden on thefamilies of patients with schizophrenia and found that relatives expe-rienced higher levels of burden when they had poor coping resourcesand reduced social support networks. Friedrich, Lively, and Buckwalter(1999) described the emotional impact of well siblings living withschizophrenia as “anxious and chaotic” with “lots of stress.” Negativesymptoms, violent behavior, social isolation, lack of motivation, andfear regarding the potential for abuse was found to create psychologicaldistress for these well siblings. Saunders (1999) revealed that familypsychological distress was a significant predictor of family functioning.Families reported that some of the most distressing problems for them re-sulted from living with the positive and negative symptoms of their fam-ily member’s schizophrenia. The most commonly identified psychologi-cal problems for the caregivers were obsessive-compulsiveness, anxiety,depression, interpersonal sensitivity, and paranoid ideation. Pruchno andPatrick (1999) gathered data from 251 mothers and fathers of adults withchronic disabilities (64% had a developmental disability and 37% hadschizophrenia). They reported that higher levels of burden were reportedwhen a child with a chronic disability lived with the mother or father,when the child’s behavior had higher levels of emotional instability andlower level of functional ability, when there was a poorer parent-childrelationship, and when the children had schizophrenia. The efficacy oftwo psychosocial interventions for families living with schizophreniawas compared by Razali, Hasanah, Khan, and Subramaniam (2000).Seventy-four patients with schizophrenia from the Culturally ModifiedFamily Therapy (CMFT) group and 69 patients from the control groupof Behavior Family Therapy (BFT) completed one year of study. TheCMFT consisted of a sociocultural approach to family education, a drugintervention program, and problem-solving skills. The CMFT approachwas found to significantly improve family burden as compared to theBFT approach.

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In summary, the literature on families experiencing severe mental ill-ness provides evidence that the illness creates continuing caregiver bur-den and psychological distress for families. Family stress can have bothpositive and negative effects and involves a demand for change in fam-ily functioning. Family distress reflects the family’s demand-resourcesimbalance and can significantly affect family functioning.

CAREGIVER/RESILIENCY

McCubbin and McCubbin (1989) defined resilience as those char-acteristics, dimensions, and properties of families that help families tobe resistant to disruption in the face of change and adaptive in the faceof crisis. Lefley (1990) discussed the potential strengths in families ex-periencing severe mental illness, such as learning to overcome nega-tive emotions, fears, and attitudes, balancing multiple family needs, andmaintaining supportive relationships and family stability. In a nationalsurvey of 131 family members, Marsh et al. (1996) discovered that thefamily experience of mental illness involved several types of resilience:consumer, personal, and family resilience. Personal resilience was re-ported by 99% of the families. Enns, Reddon, and McDonald (1999)identified resilience among 111 family members of patients admitted toa large psychiatric facility by measuring family adaptation, coping andappraisal, stressors, and resources. The utilization of family membersin the care and rehabilitation of patients with mental illness was foundto be beneficial to patient outcomes. Cuijpers (1999) performed a meta-analysis of 16 studies to test the hypothesis that family interventionshave a positive effect on relatives of psychiatric patients. This analysisindicated that family interventions could have considerable positive ef-fects on relatives’ burden, psychological distress, and the relationshipsamong patient, relative, and family functioning.

In summary, researchers have begun to look for signs of resilience infamilies which may reduce the effects of burden. Families have strengths,resources, and expertise that they can utilize in order to deal with theeffects of the crises or stressors of severe mental illness. Mental healthprofessionals need to collaborate with families in the care and rehabili-tation of family members with severe mental illness.

CAREGIVER DEPRESSION

Depression is a common experience among caregivers. Stress-proliferation models have been concerned with the conversion of

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care-related stressors into emotional distress, specifically, depression(Aneshensel, Pearlin, Mullan, Zarit, & Whitlatch, 1995). More recently,researchers have begun to examine depressive symptomatology in care-givers of families with a severe mental illness. Hobbs (1997) studieddepression in 100 Black, elderly, low-income, unmarried, caregivingmothers of adults with schizophrenia. Stressors consisted of three so-cial variables (burden of care, economic strain, undersirable life events)and one physical variable (poor physical health). Stress mediators con-sisted of coping and social support resources: The outcome variable wasdefined as depression. The results indicated support for the resourcedeterioration model with regard to a physical stressor and coping re-sources, but not for social stressors and social support resources. A studyby Song, Biegel, and Milligan (1997) examined predictors of depres-sive symptomatology among lower social class caregivers of 103 adultswith severe mental illness. The results indicated that insufficient so-cial support was the most powerful predictor of caregiver depression,followed by caregiver burden and client behavioral problems. Steffen,Futterman, and Gallagher-Thompson (1998) studied a sample of 52depressed female caregivers of family members with a severe mentalillness. The caregivers participated in various group interventions fordepression. Results revealed no significant differences among the inter-ventions with regard to improvement in depression scores. Pruchno andPatrick (1999) examined 251 mother and father caregivers of adults withtwo chronic disabilities: developmental disabilities and schizophrenia.The sole significant predictor of depression for fathers was caregiverburden. Mothers who were more depressed had adult children whosebehaviors had higher rates of noncompliance and violence, whose ownphysical health was poorer, and who had higher levels of caregiver bur-den. In-depth interviews with 50 caregivers of a family member witha severe mental illness were studied to identify how the caregiversmanaged their intense emotions over time (Karp & Tanarugsachock,2000). Results revealed that efforts to deal with a mentally ill fam-ily member aroused strong emotions due to the fact that severe men-tal illness created threats to the order and coherence of daily familyfunctioning.

In summary, the actual demands created by the task of providingcare for a family member with a severe mental illness exert effectson the stressors of caregiving. As stressors increase and the conditionspersist, the caregiver’s depressive symptomatology may worsen. Thedeterioration of the caregivers’ emotional health may impact their abilityto continue their role responsibilities.

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SOCIAL SUPPORT

Several studies have cited the positive impact of general social sup-port on physical and psychological health (Cohen & Wills, 1985; Leavy,1983; Wallston, Alagna, DeVellis, & DeVellis, 1983). During the pastthree decades, social support has been the focus of numerous researchstudies on mental illness. Pattison, Defrancisco, and Wood (1975) lookedat social support by comparing interpersonal relationships of neuroticand psychotic patients with those of normal individuals. They foundthat psychotic patients not only had the smallest number of personsin their social networks, but also that the network rarely extended be-yond their family. Social support of psychiatric patients hospitalized forthe first time was studied by Perrucci and Targ (1982). The authors con-cluded that close, supportive social networks with knowledge of, andpositive attitudes toward, severe mental illness were more likely to helpthe patient seek professional assistance when needed. Parks and Pilisuk(1984) analyzed social support of formerly hospitalized psychiatric pa-tients who resided in supportive living homes and found that the patientswere socially and psychologically isolated from their communities.

Early discussions of coping and adaptation emphasized the valueof social support as a resource (Lazarus & Folkman, 1984; Zipple &Spaniol, 1987). Social support for families with severe mental illnesshas been identified as one of the most important family resources, sincefamilies often feel isolated and alienated from their usual channels ofsocial support (Marsh, 1992). Chafetz and Barnes (1989) identified apattern of coping in families with severe mental illness that includedusing other family members and close friends for support first and thenseeking support from experienced others who have family members witha severe mental illness. Support groups have been shown to provide aneffective means of reducing social isolation and enhancing social supportby meeting behavioral, cognitive, emotional, and social needs of familiesproviding care to a family member with severe mental illness.

Support Groups

The literature provides strong evidence of the value of support groupsas a key component of social support for families providing care fora family member with severe mental illness (Adelson & Freeman,1985; Atwood & Williams, 1978; Battaglino, 1987; Donner & Fine,1987; Drescher, 1986; Hatfield, 1981, 1987; Rose, Finestone, &Bass, 1985; Rosenson, Kasten, & Kennedy, 1988; Spaniol, 1987). A

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variety of family support programs that provide social support and en-hance the social networks of families with mental illness have been de-scribed (Craig, Hussey, Kaye, Mackey, McCreath, Tremblay, & Vedus,1987; Ferris & Marshal, 1987; Shapiro, Possidente, Plum, & Lehman,1983). A reduction in family burden as well as improved emotional well-being has been reported among families with severe mental illness thatbelong to support groups (Lefley, 1996). A study by Winefield, Barlow,and Harvey (1998) of 36 caregivers of relatives with schizophrenia re-vealed useful information for mental health professionals planning torun support groups for family caregivers. The caregivers wanted bet-ter mental health rehabilitation services, accurate information regardingtheir relatives’ illness, and respect from mental health professionals.

Caregiving and Social Support

Social support has been considered as a significant factor in bufferingcaregiver stress in severe mental illness (Potasznik & Nelson, 1984).The benefits of self-help support groups for families of the mentallyill were reported in a controlled study on social support by Biegel andYamatani (1986, 1987). Jed (1989) identified three aspects of caregiversocial support that were correlated with reduced rehospitalization oftheir family members with severe mental illness. These were a largernumber in the support network, a larger number of good advisers, anda smaller proportion of conflicted support. In a 1993 study, the personalbenefits of an advocacy group, such as an Alliance for the Mentally Ill(AMI) group, were investigated among the families with severe men-tal illness (Norton, Wandersman, & Goldman, 1993). In a 1994 study,researchers found that social support was the major contributing factorfor adaptive coping in families with severe mental illness (Solomon &Draine, 1994). The multifamily work of McFarlane (1994) indicated thatparticipation in a family support group is an important coping strategyand a source of social support for caregivers of individuals with severemental illness. A model of personal healing has been developed for andused with families and friends who are caregivers of individuals withsevere mental illness (Johnson, 1994; Moorman, 1992).

A qualitative study of 15 caregivers (Rose, 1998) identified socialsupport as a recognized and crucial need for caregivers of persons witha severe mental illness. Song, Biegel, and Milligan (1997) reported ina study of lower social class caregivers that insufficient social supportwas the most predictive of caregiver depression. In a longitudinal study,Clinton, Lunney, Edwards, Weir, and Barr (1998) examined the role ofsocial support in community adaptation in 96 people with schizophrenia

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and found that social support accounted for the largest unique vari-ance in community adaptation. Patients with first-episode (defined asthe first lifetime treatment contact) schizophrenia or affective psychosisdescribed their supportive social relationships immediately prior to theirfirst treatment contact and 18 months and 5 years later (Erickson, Beiser,& Iacono, 1998). Results indicated that 18-month adaptive function-ing was lower than in the year prior to first treatment contact but at5 years rose above that seen at baseline and 18 months. Social sup-port from nonfamily members of the social support network predicted5-year adaptive functioning in the schizophrenia (n = 54) group, but notin the affective psychosis (n = 55) group. Support from family mem-bers alone did not predict 5-year outcome in either group. These find-ings replicated and extended earlier findings that social support predictsoutcome in first-episode schizophrenia. Magliano, Fadden, Madianoset al. (1998) discovered that families of patients with schizophrenia whoreported lower levels of social support were more resigned and experi-enced higher levels of family burden. Family interventions that increasedthe family social network were recommended. More family social sup-port was positively related to higher family functioning in families pro-viding care for a family member with schizophrenia (Saunders, 1999).The findings revealed that over the years, the families had graduallylearned how to mobilize the needed social support for successful familyfunctioning.

In summary, the research findings indicate that social support forfamilies with severe mental illness is important for families to functioneffectively on a day-to-day basis. Research findings indicate that socialsupport appears to have both direct and indirect or buffering effects onmental health outcomes. Social support serves as a protective factor thatfacilitates coping and family functioning, thus reducing the deleteriouseffects of social and environmental stressors.

CLIENT BEHAVIORAL PROBLEMS

Symptoms of schizophrenia often require hospitalization and can bea source of burden to families (Lefley, 1987). Symptoms associatedwith a severe mental illness may include hallucinations, delusions, tho-ught disturbances, social withdrawal, or emotional detachment (Strauss,Carpenter, & Bartko, 1974). The presence of behavioral problems posesenormous challenges for the entire family system. Family members havedescribed the suffering and difficulties of living with a family member’ssymptoms of schizophrenia, as well as the ways they have used their ownexperiences to assist other people (Dearth, Labenski, Mott, & Pellegrini,

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1986; McElroy, 1987; Mittleman, 1985; Torrey, 1988; Walsh, 1985;Wechsler, Schwartztol, & Wechsler, 1988; Willis, 1982).

During the active phase of a severe mental illness such as schizophre-nia, psychotic symptoms are present and limit functioning in areas ofself-care, social relations, and employment (Biegel, Sales, & Schulz,1991). Some of the most distressing problems for families result fromliving with the positive and negative symptoms of a severe mental illness(Marsh, 1992). The positive symptoms include delusions, hallucinations,and bizarre or agitated behavior. These symptoms are associated withacute onset, a history of exacerbations and remissions, relatively nor-mal social functioning during remissions, and a favorable response toantipsychotic medications. The negative symptoms include blunt affect,poverty of speech and thought content, apathy, anhedonia, and poor so-cial functioning. These symptoms are associated with an insidious onset,chronic deterioration, and poor response to antipsychotic medications.

Hatfield, Coursey, and Slaughter (1994) identified those behaviorsrated as most troublesome by family members. Deficit symptoms suchas low motivation and poor eating and sleeping patterns were consideredto be more disturbing than intrusive symptoms such as violence or drugand alcohol abuse. Those families who reported more serious symptomsalso reported higher levels of family burden. Biegel, Milligan, Putnam,and Song (1994), who investigated predictors of burden among 103lower socioeconomic caregivers of persons with severe mental illness,discovered that only one of the study’s 20 independent variables signif-icantly predicted caregiver burden: the frequency of client behavioralproblems. Results revealed that caregiver strain and family disruptionwere predicted by the greater frequency of client behavioral problems.The study found that behavioral problems directly impacted familieswho were caregivers of family members with a severe mental illness.Family burden was most associated with specific family member prob-lem behaviors in another study, conducted by Mueser, Webb, Pfeiffer,Gladis, and Levinson (1996).

Song, Biegel, and Milligan (1997) reported that higher levels of clientbehavioral problems were associated with higher levels of caregiver de-pressive symptomatology among lower social class caregivers of personswith severe mental illness. Rose (1998), who interviewed 15 caregiversof relatives with a severe mental illness, described their efforts to regaina sense of control over apparently uncontrollable events associated withthe symptoms of their relative’s illness. Fewer client behavioral problemswere associated with higher family functioning in 58 families provid-ing care for a member with schizophrenia (Saunders, 1999). Given theepisodic nature of schizophrenia, families had periodic difficulties with

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family member behavioral problems, which in turn created more familypsychological distress. These stressors continued to affect the family’sability to adapt and function effectively.

In summary, the research findings indicate that families living withsevere mental illness face numerous issues associated with their familymember’s behavioral problems. The stressor of living with a familymember exhibiting behavioral problems can have a significant impacton the family. The literature provides evidence that client behavioralproblems are an important factor that influences a family’s ability tofunction.

FAMILY FUNCTIONING

A review of the social science literature reveals numerous studiesof family adaptation and functioning (Antonovsky, 1987; Baranowski,Dworkin, Hooks, Nader, & Brown, 1986; Bernstein, Svingen, &Garfinkel, 1990; McCubbin & McCubbin, 1989; McCubbin & Patterson,1983; Moos & Moos, 1984; Olson, McCubbin, Barnes, Larsen, Muxen,& Wilson, 1983; Russell, 1980; Steinhauer, 1984). Family adaptationand functioning are important concepts that help in understanding thefamily’s efforts to manage the situations created by severe mental illness.Measures of family functioning and family adaptation often are used toassess the outcome of family efforts to achieve balance, coherence, andharmony (McCubbin & McCubbin, 1993). Family adaptation consistsof positive change and a successful balance among individual, family,and community levels of functioning.

Families living with a member with a chronic illness, such as severemental illness, constantly adjust and adapt as the illness or the familysituation changes (Danielson, Hamel-Bissell, & Winstead-Fry, 1993).Adjustment and adaptation to a chronic illness may result in an increasein family emotional and physical illness (Bloom, 1985; Johnson, 1985;McWhinney, 1989; Rowat & Knafe, 1985) and impaired family function-ing (Miller, Kabacoff, Keitner, Epstein, & Bishop, 1986). Severe mentalillness affects all aspects of family functioning, and all family rela-tionships and roles are altered, sometimes permanently (Marsh, 1992).These alterations include finances, employment, social life, physicalhealth, marital and family relationships, and daily household activities.Furthermore, changes in family identity may be experienced.

Saunders (1999) found that families providing care for a family mem-ber with schizophrenia were able to function more effectively as a familyunit when they used more problem-solving skills, coping strategies, and

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social support and experienced fewer instances of psychological distressand family member behavioral problems. Family psychological distressand client behavioral problems were identified as significant predictorsof effective family functioning among these families.

In general, research on family adaptation and functioning with severemental illness has shifted the focus away from the unhealthy, dysfunc-tional family to the healthy, functional family with a constant need foradjustment and adaptation. The pathology models of family functioningare being replaced by a more positive orientation that identifies the char-acteristics of healthy, strong, and successful families emphasizing familyflexibility, integrity, predictability, and unity (Barnhill, 1979; Beavers &Hampson, 1990; Curran, 1983; Dunst, Trivette, & Deal, 1988; Fisher,Giblin, & Hoopes, 1982; Lewis, Beavers, Gossett, & Phillips, 1976;Marsh, 1992; McCubbin, Patterson, & Lavee, 1983; Olson et al., 1983;Stinnett & DeFrain, 1985). A chronic illness in families can offer pos-itive aspects such as renewed family growth, closeness, and stability(Johnson, 1985; McCubbin, 1988; Mishel, 1990).

SUMMARY AND DIRECTIONS FOR NURSING RESEARCH

The extensive social science research literature on families living withschizophrenia published in the recent past reflects an increased interestin this area. Both quantitative and qualitative studies have succeededin advancing our understanding and extending our knowledge of thispopulation. In particular, the last two decades of caregiving research hasprovided much of the foundation for future research on caregivers ofpersons with severe mental illness, whose ranks will only continue togrow. However, the social conceptions of these constructs have changedover 30 years of research. The guiding theme throughout the more recentinvestigations is one of resilience with a focus on the strengths andadaptive capabilities of families.

Despite the increase in research effort and the quality of investigationsreported, unanswered questions still exist. Examples include exploringcross-cultural differences involving ethnic minorities and developingmultiple models of family psychoeducation sensitive to social and cul-tural diversity. Culturally-guided nursing interventions are essential. Theapplication of innovative methods to explore unique strengths of minor-ity families would provide a greater understanding of how culturallyadaptive styles might be useful and effectively used in working withother ethnic groups. Little knowledge is available regarding the long-term health consequences of caregiving. Nursing interventions need tobe guided by the following question: What can be done to increase health

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behaviors among caregivers? A paradigm shift from stress responseto health behavior may empower caregivers. Studies are needed thatcompare caregiving experiences across different illness scenarios: com-monalities as well as differences in stressors and health consequencesneed to be identified. Caregiver burden and caregiver resilience stud-ies need to be expanded upon, particularly in terms of caregiver de-pression and caregiver rewards. Families’ changing needs and readinessfor specific kinds of support as they strive to cope with the challengesof caring for their mentally ill members need to be evaluated. Longi-tudinal research would further articulate the causal linkages betweensignificant predictors and numerous variables, such as family coping,social support, patient behavioral problems, psychological distress, care-giver depression, long-term caregiver health behavior, and overall familyfunctioning.

Currently, the majority of the research on families living with a severemental illness comes from the broader social science literature, not fromthe nursing literature. The major disciplines represented in the social sci-ence literature are psychology, sociology, and medicine. There remainsa critical need for nursing research in this area. After all, it is mentalhealth nurses who work with these individuals and families on a dailybasis. We, as mental health nurses, have the ideal opportunity to assistthe families to function more independently in the community, to de-velop more effective coping behaviors, communication skills, and socialsupport systems, more rewarding interpersonal relationships, and ulti-mately, more active decision-making skills. In addition, we value andutilize the input of the needs and desires of each of the family members.Therefore, it is essential that we continue to generate knowledge thatmay improve the quality of life for families living with a severe men-tal illness. Research on nursing interventions that specifically enhancedaily coping, adaptation, caregiver health status, and quality of life forfamilies living with severe mental illness is a potentially powerful arenafor psychiatric nursing research contributions.

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