EBP TIMES September 2008

Kansas Family Partnership:
Understanding the Family Members
Of Someone with Schizophrenia

By Sue Ellen Jayne, LMSW

Family Psychoeducation is an evidence-based psychiatric rehabilitation practice that aims to achieve the best possible outcome for consumers with schizophrenia through collaborative treatment between clinicians, consumers, and family members. This partnership attempts to alleviate the stress experienced by family members by supporting them in their efforts to aid the recovery of their loved one.

	The program consists of a family-consumer-professional partnership that combines clear, accurate information about mental illness with developing social networks and training in problem solving, communication, and coping skills.
	Three Kansas Community Mental Health Centers, Valeo Behavioral in Topeka, South Central Mental Health in El Dorado, and High Plains in Hays have started implementation of Kansas Family Partnership.
	Families participating in Kansas Family Partnership are being referred to the local NAMI chapter as an additional resource and are being encouraged to become members.
	The University of Kansas, School of Social Welfare Office of Mental Health Research and Training is providing the consultation, training, and fidelity monitoring for this project.

Why is it necessary to involve family members of a consumer with schizophrenia in their treatment and recovery?

	Schizophrenia impacts everyone in the family, whether the consumer lives in the family home or elsewhere.
	When a family experiences the severe and chronic stress associated with living with schizophrenia without receiving help and support, family members will be less able to continue to help the consumer effectively.
	There are things that family members can do that may make things better for the consumer. The information that KFP teaches family members is not necessarily the natural responses anyone would have to someone who is ill. Nor are the skills taught meant to imply criticism of the ways family members may have coped in the past.
	Family members play a meaningful role in their relative’s treatment, rehabilitation, and recovery.

KFP can help the consumer and family to maintain a balance that meets the needs of all members of the family.

Understanding the family:

Expecting family members to respond in the most helpful manner to the often confusing symptoms of schizophrenia without some knowledge base and understanding is, at best, unrealistic. Just as families dealing with a loved one who has been stricken with a serious and chronic illness might learn new skills (e.g. special diets for diabetes), so do families of people with mental illness need education in the most effective ways to help mental health consumers manage their illness.

Mental illness can be a terrible family tragedy. At times, family members experience overwhelming feelings of grief, anxiety, and remorse. These are the same feelings anyone would experience from a family tragedy. Effective work with families requires that practitioners grasp the enormity of the stress placed on the families of people with mental illness. Families face a drastic change in their lives, which requires significant changes in behavior and capacities for dealing with strong emotion. It is important that practitioners have an understanding of how the family experiences mental illness.

There are two categories of the burden of mental illness:

	Subjective burden- Refers to the sense of anxiety, loss, grief, and pain family members’ experience.
	Objective burden- Refers to the adverse effects on the household, such as heavy financial costs, negative effects on the health of others, and the disruption of lives.

The life the family is accustomed to, or expects, must give way to a life able to accommodate the inordinate demands of mental illness. Rapid adjustments must be made as each new development in the illness threatens the precarious stability that has been painfully achieved.

Persistent sorrow is a frequent and overwhelming feeling of families. In many ways it is like mourning the death of a loved one, but it is not a physical death. Rather, it is the death of a life as it might have been. It is important that practitioners recognize the grieving reaction of families. There are customs and rituals for easing the pain of those who have lost someone through death. However, there is little cultural support provided to ease the pain of those who have “lost” someone to mental illness.

Stigma for the consumer means a constant series of rejections and exclusions. Families take on stigma as a shared burden with the consumer. They think carefully about whom to tell, and, at times, spend much energy contriving to conceal it.

Families often feel they carry a great deal of responsibility but have little power to influence things. The rights of adult consumers to make their own decisions about treatment, hospitalization, and money leaves families in a terrible quandary when decisions made by the consumer have negative consequences. Family members report that they suffer high and persistent levels of anxiety. Families wake up in the morning apprehensive about what the day may bring, or even dreading what they may need to face. Families soon learn to stay on guard, to live in apprehension that the shoe will soon drop again. There is no escape from being constantly on the alert. While staying vigilant, family members are also often seen as overprotecting the consumer or having a “pathological” need to keep them dependent. People who have not had day-to-day experiences with a family member who has a mental illness may fail to appreciate how difficult it is to balance the appropriate amount of protection and support and yet allow for enough risk taking to permit growth.

In light of the above description of how families are affected by psychiatric disorders, Kansas Family Partnership practitioners can be of assistance to help families to:

	Assist their relative in obtaining treatment and services.
	Understand and normalize the family experience of mental illness.
	Focus on the strengths and competencies of their family and the consumer.
	Learn about mental illness, the mental health system, and community resources.
	Create a supportive family environment.
	Develop skills in stress management, problem solving, and communication.
	Resolve their feelings of grief and loss.
	Cope with the symptoms of mental illness and its repercussions for the family.