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Extensive evidence supports the importance of the involvement of families in the mental health care of patients with schizophrenia and other serious mental illnesses. Family involvement is endorsed by the President's New Freedom Commission and the American Psychiatric Association Practice Guidelines on schizophrenia.
Extensive evidence supports the importance of the involvement of families in the mental health care of patients with schizophrenia and other serious mental illnesses. Family involvement is endorsed by the President's New Freedom Commission1 and the American Psychiatric Association Practice Guidelines on schizophrenia.2 Up to 75% of people with schizophrenia are in regular contact with their families,3 and more than one third of individuals with schizophrenia live with family members, often aging parents.4 Families provide emotional and financial support, as well as advocacy and facilitation of treatment for their mentally ill relatives.5 Understanding the burden experienced by families of patients with schizophrenia, as well as the evidence-based practice for working with families, can help the practicing psychiatrist meet the needs of individuals with schizophrenia and their families.
Families of patients with schizophrenia face many challenges. The concept of family burden illustrates the impact of mental illness on families. Objective burden includes the practical, day-to-day problems and issues related to having a family member with a mental illness, such as loss of income and disruption of household routines. Subjective burden includes the psychological and emotional impact of mental illness on family members, including feelings of grief and worry.6-8 The stresses of illness exacerbations coupled with limited social and coping capabilities contribute to subjective burden.5 The recent Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) study found that most family members reported strains associated with supporting their ill relative.9 The CATIE analyses revealed 4 burden factors:
Notably, even when more florid symptoms have been controlled, caregivers continue to worry about the patient's ability to experience normal pleasures of occupational, leisure, and social activities.
Experience of different family members
Clinicians need to appreciate the heterogeneity of families and that family burden varies depending on the relationship to the patient who has mental illness. Although much of the literature has focused on parents who have adult children with schizophrenia, it should be noted that 20% to 30% of patients with schizophrenia are married or are in relationships,10 and some have children. Ståhlberg and colleagues11 found that the unique role and relationship of siblings of people with schizophrenia also requires attention.
Parents of mentally ill adult children often grieve the loss of the child they knew before the onset of the illness and who that child might have become had the illness not occurred. Such grief and embarrassment often lead to profound isolation. These parents may also be providing their mentally ill child with emotional as well as financial support and housing.12,13 Aging parents who are caregivers for mentally ill children worry about what will happen to their child when they are dead or infirm and can no longer care for him or her. They report significant unmet needs for information on future planning.14,15
In their article, Jungbauer and colleagues10 report on the burden of spouses of persons with schizophrenia. The spouses and partners of patients with schizophrenia experience illness burden that overlaps and extends beyond the experience of parents. Not only are there practical considerations, such as loss of income, there may also be the loss of the benefits of a partnership when the spouse assumes the role of the caregiver for the mentally ill partner. A diagnosis of schizophrenia can be particularly devastating for the healthy partner when the onset of the illness occurs after the marriage or after the start of the relationship, or when the partner who is ill becomes threatening or assaultive during illness exacerbations.
Siblings also may have specific needs.11,16,17 Sisters are more likely than brothers to assume a primary role. By necessity, siblings become more involved with the mentally ill relative when parents are unavailable or aging. Schizophrenia creates issues with the sibling bond that evoke feelings of guilt in the healthy sibling; this dynamic may create a variety of coping patterns in the healthy sibling including avoidance, normalizing, caregiving, and grieving. Furthermore, healthy siblings often have a fear of becoming mentally ill or passing on "bad genes." This is particularly true if there also is a parent with a mental illness.
A particularly at-risk group includes the children of patients with schizophrenia. One recent study of more than 400 patients with schizophrenia found that more than one third had children.18 Adult children of patients with schizophrenia have been found to have had residential instability as children and to have experienced feelings of embarrassment or fear related to their parents' symptoms. These adult children reported great variation in knowledge regarding their parents' illness, with some having had no information at all.19
The family experience of schizophrenia is not restricted to burden; it may also be rewarding,20 particularly as the mentally ill relative makes progress in his or her recovery. Furthermore, siblings have reported personal qualities and strengths gained from having a mentally ill brother or sister.11
The evidence-based approach to providing families and patients with the assistance they need is Family Psychoeducation (FPE). FPE includes several clinical interventions offered as part of an overall clinical treatment plan with a primary focus on reducing relapse and improving the functioning and well-being of the patient. FPE is given with medication treatment and seeks to optimize medication adherence. One single-family modality is Behavioral Family Management,21,22 which includes assessment, problem analysis, education, and development of problem-solving skills and effective communication approaches.
Another method of FPE involves multiple family groups. The Psycho-educational Multiple Family Group (PMFG) model has 4 phases23:
All effective models of FPE share a core set of components identified by the World Schizophrenia Fellowship.24
Study findings indicate that FPE reduces relapses among persons with schizophrenia with effect sizes comparable to those seen with psychotropic interventions.25-30 The rate of relapse is generally half that of patients who do not receive FPE. FPE also reduces symptoms,31 enhances social functioning, improves quality of life, reduces family burden,32 and improves family functioning.25 Following a rigorous and conservative review process, the Schizophrenia Patient Outcomes Research Team recommended that patients with schizophrenia who have ongoing contact with their families be offered a family psychosocial intervention of at least 9 months that includes education about psychiatric illness, family support, crisis intervention, and problem solving-skills training.3
Challenges of implementing FPE
Many challenges have arisen in implementing FPE. Patient, family member, provider, and agency barriers have limited its dissemination.20 Patients may be reluctant to have family members involved in their mental health treatment because they fear losing confidentiality. Patients have also reported being worried about being a burden to their families and may be unaware that FPE can actually reduce family stress.33 Family members may not recognize the benefits of FPE, and both patients and their families may face practical barriers such as transportation and time constraints. Providers may lack understanding of the importance of family involvement and may also be concerned about the cost and duration of FPE. Mental health staff may feel that they do not have time for FPE. Clinic administrators may worry about inadequate resources and financial considerations, such as staff training or lack of reimbursement.
Efforts to disseminate FPE have attempted to overcome these barriers.20 These interventions include providing patients and families information to allow a greater understanding of confidentiality concerns and assisting with the practical issues of transportation and scheduling. Among clinicians, greater awareness of the effectiveness of this approach as well as training and administrative support is required. From the perspective of mental health administrators, there is a need for a considerable upfront investment in time and resources and for involvement from key stakeholders from the planning stage onward, with ongoing monitoring of necessary services.34
Yet, even when there are concerted efforts to overcome the various barriers associated with its implementation, FPE is not widely available and is not being readily used by the families of patients with schizophrenia. A recent New York State effort to implement FPE at 35 sites was discontinued, in part because of low penetration of the programs and a perception among system-level leaders that while FPE was very positive for the individual participants, it was not effective in meeting the needs of the large number of families receiving services in community settings. An initiative to implement a family consultation model replaced the FPE effort.35 The 8-state project used tool kits for different evidence-based practices and resulted in relatively few patients receiving FPE (T. Marshal et al, unpublished data, 2007).
An even more troubling problem than the limited availability and use of FPE-an intensive service-is the consistent research finding that even minimal family contact with clinicians occurs in less than half the cases in which patients receive treatment for schizophrenia.36 To increase the involvement of families in care as well as in the use of PFE, it is essential to get a better understanding of what families want.
FPE has been found to be remarkably and consistently effective in research studies; however, it may not appropriately target the needs and preferences of the majority of patients and families (A. Drapalski et al, unpublished data, 2007). Such needs and preferences are impacted by patient and family characteristics such as phase of life,37 relationship to the patient,38 amount of contact,39 and severity of mental illness.40
Since FPE is effective in preventing relapses, it may be optimal for families of patients with recent illness onset in which the patient has frequent relapses; but FPE may be less relevant in situations in which the patient has been stable for many years. For example, the needs of aging parents whose daughter with schizophrenia is living in a group home and struggling with repeated exacerbations and hospitalizations may be very different from those of a middle-aged wife whose husband has schizophrenia, but is stable with medication and treatment and is able to work and actively participate in parenting.
For assistance with unmet needs, many families have turned to community-based, family-member led programs, such as the Family to Family Education Program (FFEP) from the National Alliance on Mental Illness (NAMI). FFEP uses unpaid volunteers and a 12-week course that combines education, skill building, and support. The focus is not on patient improvement but on improving the coping, knowledge, and well-being of the caregiver. Preliminary evidence suggests that FFEP reduces family members' subjective illness burden and increases empowerment.20,41
A randomized trial of the Journey of Hope program, which is similar to FFEP, found that participants endorsed fewer depressive symptoms and had greater vitality and improved views of their relatives with mental illness.42 Programs such as these have the potential not only to improve family members' well-being but also to educate them about mental illness and its treatment and how to better navigate the mental health system.
New approaches aim to engage patients and families using motivational techniques, support, and problem solving to identify and address unmet needs and preferences. The Family Member Provider Outreach program, a recovery-oriented brief, manualized approach, is being tested to see if it overcomes barriers to family involvement in care and FPE.43
Working with families is good clinical practice
Good clinical practice suggests that clinicians talk with patients and their families about what they want and need and provide them with a flexible menu of interventions, including FPE and NAMI programs, such as FFEP. Families typically value the mental health services provided to their ill relatives but may have minimal knowledge about psychiatric illness and available resources, as well as inadequate supports and limited training in the development of coping and problem-solving strategies.5 Dialogue with families requires a combination of the clinical skills needed to work with patients and the communication skills necessary for interacting effectively with colleagues.44
The challenge of providing the right intervention at the right time for each patient-family unit is daunting, and research has yet to provide clear evidence for developing a set of guidelines for family interventions that are feasible, well-accepted, and effective. Clinicians working in inpatient settings need to remember that families are typically dealing with a crisis and may be experiencing a range of emotions; intense, unmet needs for information; and unrealistic expectations of inpatient treatment, as well as having to deal with limited clinician time and confidentiality.33
Outpatient settings require the clinician to work with families to maintain community tenure and promote patient recovery. Clinicians may need to work harder at engaging families in the absence of an acute crisis, but the benefits can be considerable. Clinicians need to remember what available programs they can recommend to family members, including intensive programs such as FPE, the NAMI's FFEP, brief education, and family consultation, as well as regular dialogue and updates.
|• Family psychoeducation|
|• Family-to-family education program|
|• Family consultation|
|• Brief family education|
|• Family support groups|
|• Regular family treatment planning meetings|
The Table provides some techniques that physicians can use when working with patients with severe mental illness and their families. The tools need to be matched with the potential clinical scenarios. Such scenarios range from helping families and patients in the midst of a relapse to assisting families as they help the patient tackle a new job or quit smoking. For some families, particularly when there are repeated exacerbations of illness, the use of less intensive interventions may serve as a gateway to FPE.
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