Caregiving and Caregiving Interventions in Mental Illness / David E. Biegel, Ph.D.

Family caregivers provide significant amounts of social support to their family members who have mental illness. My talk today, based upon my own research and the research of others concerning families of persons with serious and persistent mental illness addresses the following four questions:
What are the gratifications, burdens and health effects of caregiving on the family caregiver?
What do family members say about their involvement with rehabilitation professionals?
What programs and services have been developed to address family member needs and how well do they work?
How can we best meet the needs of family caregivers in the future?

Chronic illnesses affect and involve entire family system and not just the individual who is ill. As Lubkin states chronic illness is “the….. presence, accumulation, or latency of disease states or impairments that involve the total human environment for supportive care and self-care, maintenance of function, and prevention of further disability” (p.6) (Lubkin, 1986).
Caregiving has been found to have positive aspects or gratifications, as well as stresses. For example, when asked about the gratifications of providing care to their ill relatives, over three-quarters of family members of persons with mental illness reported loving him/her, being happy to do things for him/her, enjoying being with him/her, and feeling that he/she is an important part of the family members’ life (Tessler & Gamache, 2000). Clients can be care providers to their family members as well as recipients of care. Almost two-thirds of the family caregivers in the Tessler & Gamache (2000) study reported receiving some benefits from the client, for example, giving companionship, giving news about friends and family, listening to their problems, and helping with meals and shopping.
However, research over the past two decades with families of adults with serious mental illness have identified a number of significant problems, as follows, faced by family caregivers:
Managing their mentally ill relatives’ symptomatology and behaviors.
Isolation of caregivers due in part to the stigma of mental illness.
Interference with personal needs of family members.
Inability of the client to carry out the tasks of daily living
Problems with clients’ use of medications.
Lack of involvement in their relatives’ treatment.
Failure to validate family perspectives on behavioral problems of clients.
Lack of sufficient interaction and assistance from mental health, substance abuse, and human service professionals.
Inadequacies of treatment systems for mental illness and especially, treatment systems for co-occurring substance and mental disorders.
Not having enough informal support in providing care to their relative with mental illness, even for those caregivers with strong overall social networks.
Lack of adequate information about their family members’ illness.
Lack of respite from family caregiving responsibilities (Biegel & Wieder, 2003; Biegel & Schulz, 1999).
Many family caregivers of adults with serious mental illness report significant levels of caregiver distress (burden and depressive symptomatology). Caregiver distress is impacted by stressors relative to the client’s illness as well as social factors (i.e., stigma) related to mental illness. Given the chronic nature of mental illness, burden on families can continue for long periods of time, at varying levels of intensity. Family caregivers may also be at increased mortality risk. A recent study of spouse caregivers of persons with Alzheimer’s disease who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than non-caregiving controls (Schulz & Beach, 1999).
It is important for rehabilitation professionals to help address issues of family caregiver distress. Family caregivers are a principal provider of social support to their ill family members. If the caregiver is distressed, she/he may not be able to provide this support to their ill family member. In addition, stressed caregivers face health risks due to the stress of caregiving. In order to intervene to help family caregivers, professionals need to understand the causes of family caregiver distress.

Together with colleagues, I have conducted research studies of the predictors of burden and depressive symptomatology of lower socioeconomic family caregivers of adults with serious mental illness (Biegel, Johnsen, & Shafran, 1997; Biegel, Song, & Milligan, 1995; Song, Biegel, & Milligan, 1997). Findings from this research indicate that caregivers experience low to moderate levels of burden and high levels of depressive symptomatology (42% of Caucasian caregivers and 28% of African-American caregivers were at risk for clinical depression). Burden of family caregivers was predicted by greater frequency of client behavioral problems and lower perceived support from family members. Depressive symptomatology was predicted by lower social support and higher burden.

A number of studies have focused on the relationship between family caregivers and mental health professionals. When asked what they want from mental health professionals, family members are very clear and consistent in stating their needs:
Information about specific techniques for managing family members’ behaviors.
Practical advice and assistance in caring for their family member with mental illness and help caring for themselves.
Information about community resources.
Desire for involvement in clients’ treatment planning and decision making decisions.

Twenty-five years ago, families reported problems concerning insufficient knowledge/information about mental illness, and insufficient contact with mental health professionals. Today, though policy makers believe the family involvement in the design, implementation and evaluation of mental health services is desirable, family involvement in the treatment of their relatives with mental illness is still the exception rather than the rule. My research studies have found that about one-quarter of families reported no contacts at all within the past six months with mental health professionals who are providing care to their ill family members. Over one-third were not given information about mental illness and more than half were not consulted concerning their family members’ treatment. Almost two-thirds were not given any advice or assistance about their own care needs (Biegel, Song, & Milligan, 1995). These findings are reinforced by a recent study that found that families were not satisfied with the amounts or types of contacts they had with professionals (Tessler & Gamache, 2000).

A variety of interventions, such as support groups, educational programs, psychoeducation groups and individual family support have been developed over the past two decades to help address the needs of family caregivers of adults with serious mental illness. A recent review that colleagues and I conducted of the effectiveness of these interventions found the following:
All intervention modalities reported reductions in caregiver burden except the support group modality.
Burden reductions in educational interventions were short-term but were longer lasting in psychoeducation interventions.
Family functioning increased in education and psychoeducation interventions, but not in support groups.
Few studies examined changes in caregiver mental health status—depression, anxiety, psychosomatic symptoms. There were improvements in these variables in the education and psychoeducation interventions.
All modalities except for Individual Family Support showed positive changes in internal coping strategies, though this was differentially measured. These changes were the strongest in the education and psychoeducation interventions.
Decreases in client symptomatology were associated with education and psychoeducation interventions, the only studies that measured this outcome. These changes persisted only in interventions of longer length.
Family attitudes toward, and their relationships with, clients improved in the education and psychoeducation interventions (Biegel, Robinson, & Kennedy, 2000).

In conclusion, there are a number of things that rehabilitation professionals can do, now and in the future, to address the needs of family caregivers of adults with serious mental illness. First, rehabilitation professionals can work to increase involvement of families in the mental health treatment of their ill family members. In doing so, barriers to family involvement, such as confidentiality, and lack of knowledge by professionals of family needs and issues must be addressed.

Second, rehabilitation professionals help address barriers to involvement by families in family interventions. Availability of programs for family members does not guarantee their use by family members due to barriers such as lack of awareness of programs by families or fear of using such programs due to the stigma of mental illness. Rehabilitation professionals can help address these problems through the use of community-based strategies that involve gatekeepers and community groups. The lack of referrals by clinicians to family support organizations should also be addressed.

Third, families should be provided more information about mental illness and should be given concrete advice about managing their relatives’ illness, especially behavioral problems associated with the illness. Behavioral problems of clients is the strongest predictor of caregiver distress, yet many families don’t know what to do to address such problems.

Fourth, interventions for families, especially evidence-based interventions, need to be more widely adopted by rehabilitation professionals. Interventions for family caregivers have not been widely adopted as standard practice by most mental health systems in the U.S.; so once again, the issue of barriers to adoption must be addressed.

Fifth, rehabilitation professionals need to be realistic about what specific interventions can accomplish. Too often, interventions promise more than they can deliver or are not focused on addressing the important determinants of the problems they are designed to mediate.

Sixth, there is a need for a variety of different types of interventions for family caregivers; one size does not fit all. The focus of education and psychoeducation interventions should be on client behavioral problems in order to help address the major predictor of caregiver burden. Though support groups did not affect levels of caregiver burden, family functioning, or caregiver depression, they did increase caregiver social support and caregivers were positive in their evaluation of these groups. Thus, such groups can play an important role in addressing the isolation of families.

Finally, psychoeducational interventions need to be more widely used by public mental health systems; multi-family interventions are cost-effective and efficacious (McFarlane, 2002).
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References
Biegel, D.E., Johnsen, J.A., & Shafran, R. (1997). Overcoming barriers faced by African
American families with a family member with mental illness, Family Relations, 46 (2), 163-
178.

Biegel, D.E., Robinson, E.M., & Kennedy, M. (2000). A review of empirical studies of
interventions for families of persons with mental illness (pp. 87-130). In J. Morrisey (Ed.),
Research in Community Mental Health, Volume 11. Greenwich, CT: JAI Press.

Biegel, D.E. & Schulz, R. (1999). Caregiving and caregiver interventions in aging and mental
illness. Family Relations, Special Issue, 48 (4), 345-354.

Biegel, D. Song, L., & Milligan, S. (1995). A comparative analysis of family caregivers
perceived relationships with mental health professionals.. Psychiatric Services, 46 (5), 477-482.

Biegel, D.E. and Wieder, B. (2003). Caregiving: Informal (pp.198-205). In J.J. Ponzetti (Ed. In
Chief), International Encyclopedia of Marriage and Family Relationships. New York:
Macmillan Reference.

Lubkin, I.M. (1986). Chronic illness: Impact and intervention. Boston: Jones & Bartlett
Publishers, Inc.

McFarlane, W.R. (2002). Multifamily groups in the treatment of severe psychiatric disorders. New
York: The Guilford Press.

Schulz, R., & Beach, S. (1999). Caregiving as a risk factor for mortality: The Caregiver Health
Effects Study. JAMA, 282, 2215-2219.

Song, L., Biegel, D.E., & Milligan, E. (1997). Predictors of depressive symptomatology
among lower social class caregivers of persons with chronic mental illness. Community Mental
Health Journal, 33 (4), 269-286.

Tessler, R., & Gamache, G. (2000). Family experiences with mental illness. Westport, CT: Auburn
House.