There is strong empirical evidence that providing supportive services to families of individuals with mental illness leads to significantly improved patient and family outcomes (1). However, it is not part of mainstream health care practice to work with patients’ families (2). Additionally, providers experience a variety of barriers to working with families, including constraints associated with confidentiality, organizational structures, health care financing, and heavy workloads (3). Health care providers may not be educationally prepared to work with the families of individuals with mental illness. Changes in curricula may strengthen family-focused knowledge and practice skills.

Medical education stresses a biopyschosocial approach that includes families of patients in theory, but little is known about formal training in working with families as reflected in the learning expectations or curriculum guidelines. Obtaining information about medical information curriculum guidelines with respect to families of patients with mental illness is a critical first step in determining whether curricular gaps exist. This study intends: 1) to identify empirical themes from mental health practice literature about the experiences and needs of families of individuals with mental illness, and 2) to determine the extent that these themes are reflected in medical education curriculum guidelines.

Experiences and Needs of Family Members

Family Experiences

The experiences of family members of people with mental illness include stigmatized social interactions, high levels of stress, and ongoing caregiver burden (4). Descriptions of patients’ stigmatized interactions with others appear regularly within the mental health practice literature (5). Descriptions of stigma that patients experience and the “stigmatizing attitudes” of health care providers appear regularly in the mental health practice literature (6). Compared to the general population, people with mental illness have higher physical health care risks, yet receive less primary health care services (7). Patient attitudes toward seeking mental health services in a general community sample are more negative than those demonstrated by medical students and providers (8), yet medical students also reported hesitation in seeking treatment for depression (9). Stigma is cited as one of the greatest barriers to effective mental health treatment (10).

Family members of people with mental illness report that the social stigma of mental illness extends to them (11, 12). They describe feeling isolated, ignored, blamed, and criticized by family, friends, neighbors, colleagues, and even mental health providers (13). Family supportive interventions empirically demonstrate outcomes that exceed those of many psychotropic medications, but stigma may result in the delayed implementation of such interventions (14).

Family members of individuals with a mental illness report emotional, relationship, financial, health, and time stressors (15). Johnson (16), a family member and mental health practitioner, wrote of the onset of his son’s schizophrenia symptoms, “Nothing in my training prepared me to cope with psychosis in a family member. I could easily make a diagnosis, and I knew something about mental health treatment, but I could not imagine what living 24 hours a day with a person in the agony of psychosis could be.”

Family members describe the cyclical and ongoing caregiving responsibilities for relatives with mental illness as contributing to family “burden” by exceeding family member’s resources (17). In reaction to the mental illness symptoms and ongoing care of a relative, family members’ reported relationship strains, as well as feelings of grief, loss, sadness, anger, frustration, shame, and guilt (18). They described financial concerns, time crunches, insufficient support for families, and inadequate treatment options for their relatives with mental illness (19).

Family Needs

Family members need to strengthen coping skills to adjust to, recover from, and ultimately adapt to a relative’s mental illness (18, 19). Further, family members need support, communication with providers, involvement in crisis planning, and psychoeducation (13, 14).

Family members recommend that mental health providers assess levels of family caregiver burden and provide support (20). Practitioners can listen to family members, provide information, and make referrals to community-based services that may help to strengthen family resources (16, 21). Family structure as it relates to kin ties, race, ethnicity, culture, and help seeking behavior needs to be considered when beginning collaborative communication (15, 22).

Collaborative communication is especially important during a patient’s mental health crisis (23). Further, outreach to the family is important in the early stages of the diagnosis and first episode to understand symptoms of the specific illness to prepare for future crises (23).

There is a need for multiple family group psychoeducation interventions to deliver information to groups of family members about mental illness, mental health treatment, and community resources (24) as outcomes are stronger for this type of intervention as compared to individual family psychoeducation (25). Mental health professionals can either provide multiple group family psychoeducation directly or refer family members to these groups (26). In either case, it is important that providers are aware of and support family psychoeducation interventions. As McFarlane et al. (27) reported, positive attitudes among community mental health staff about the value of family psychoeducation predict whether this approach is adopted.

Diagnostic differences do not appear to be as strongly emphasized in the family literature as the frequency of crises, intensity of the patient illness symptoms, duration of the illness, and the life stages of the patient and family (28). Some self-help texts or narratives of family experiences refer to family members living with patients with diagnoses such as bipolar disorder and schizophrenia (29–31). There are variations in family psychoeducation programs by patient diagnoses. McFarlane’s (32) model was developed for family members of patients with schizophrenia. Goldstein and Mikolowitz (33) adapted the model for families of people with bipolar affective disorder. NAMI family to-family programs include an overview of a number of clinical diagnoses (1).

Medical Education for Working with Families

Heru’s research (34) on family centered treatment in internal medicine, pediatrics, and psychiatry found that “families have powerful influences on health that are equal to or surpass other risk factors and…brief family interventions increase health and decrease the risk of relapse in chronic illness.” Medical students, residents, psychiatrists, and primary care practitioners can learn to incorporate families into the assessment and treatment of individuals with mental illness (35). Berman et al. (36) reported that the Residency Review Committee statement of core competencies for psychiatry training mandates family involvement. However, competence in working with families should extend beyond psychiatrists to primary care physicians, as they frequently serve as providers and gatekeepers for mental health assessment, treatment, and referral (37). Front-line health care providers report frequent encounters with patients with psychiatric disorders (38). Primary care physicians also describe mental health treatment as within their scope of practice (39). While questions about primary care providers’ level of preparedness for providing direct mental health treatment remain (8), patients and families cite primary care physicians as the most appropriate source for advice and guidance on mental health concerns (40).

Despite demonstrated effectiveness of family interventions (41), little is known about the formal education that primary care physicians and/or psychiatrists receive to develop the knowledge and skills to understand family members’ experiences and to help meet their needs (36). Experiences with families of mental health patients appear to be limited during medical education. A survey of psychiatry residency programs revealed that less than half included formal involvement with family support groups (42). Medical education experiences include participating in a family evaluation clinic (43), collaborating with families within mental health treatment (44), and providing family therapy (45). Even with some exposure to working with families, medical students’ self-reported beliefs about the importance of working with families did not change over the course of a 6-week psychiatry rotation (46). Amenson and Liberman (47) found that an intensive training program for mental health therapists in family education techniques resulted in a 44%–87% increase in the incorporation of family education in treatment. Further, these providers attributed their interest in continuing to provide family education to the increased competency gained from the training program. These data indicate that including more opportunities to work with families of patients in the medical education curriculum is needed to improve physicians’ skill to increase family involvement in care.

Determining the expectations of medical students and residents for developing knowledge and skill in working with families of individuals with mental illness would highlight the current strengths and gaps in medical education. This study establishes a set of empirical constructs or “themes” related to the experiences and needs of family members of individuals with mental illness. It determines how these themes are represented in national medical education guidelines. This baseline review is intended to identify specific areas that medical educators should address in order to strengthen the educational preparation of medical students and residents to work with families of patients with mental illness.

Classical text analysis methods were used to determine the key concepts that 1) reflect the most salient and empirically based themes related to working with families of patients with mental illness and 2) best tap the information in medical curricular guidelines and objectives related to this topic. Operational definitions of terms, such as family stigma, stress, and psychoeducation were used during the literature search. The language and themes used in the social and medical sciences were matched to prevent disciplinary bias, which could result in an underreporting of medical education content about families of patients with mental illness.

Determining Key Family-Focused Themes

Text analysis of literature and education guidelines was accomplished through an iterative process. A broad list of family-focused themes central to social work, psychology, psychiatry, individual therapy, and family therapy were generated. These themes consistently appeared within published literature across the social and medical sciences and described the experiences and needs of family members of people with serious mental illness. Themes were then grouped into analytical categories to reflect substantial similarities. Themes were used as keywords for an initial search of the literature, curricular guidelines, and objectives. Based on this search, the list of central themes was collapsed even further, resulting in seven themes: mental illness stigma; family/caregiver burden; information exchange and referral; family stress, coping, and adaptation; family support; crisis response; and family psychoeducation. Ten research articles were identified with strong empirical designs for each family-focused theme.

The primary electronic databases used to conduct the literature review included MEDLINE, SERFILE, NASW Index, International Bibliography of Social Sciences, International Political Science Abstracts, PsycINFO, and Social Work Abstracts. Examples of keywords used for searching and their return rates include mental illness combined with family (5096), caregiving burden (202), stigma (11), community resources (86), family support (155), and mental health referrals (547). Ultimately, over 6000 publications were consulted.

Retrieving Medical Education Curriculum Guidelines about Families

The search of curricular guidelines focused on U.S.-based, allopathic medical schools (MSE), graduate medical education (GME) programs (residencies), and continuing medical education (CME), specifically in the family practice, internal medicine, pediatric, and psychiatry specialty areas. These specialties provide the majority of care related to mental illness and interface regularly with families of patients with mental illness.

Three main data sources were used to determine the presence of guidelines relative to the seven key themes: The Liaison Committee on Medical Education (LCME), sponsored by the Association of American Medical Colleges and the American Medical Association—the nationally recognized accrediting authority for medical education programs leading to the medical doctoral degree in U.S. and Canadian medical schools; the Accreditation Council for Graduate Medical Education (ACGME) which is responsible for the accreditation of post-M.D. medical training programs in the United States; and the specialty-specific professional organizations such as APA, the American Academy of Pediatrics, the American College of Physicians, and the American Academy of Family Physicians.

An instrument was developed to standardize data collection consisting of a matrix with cells representing MSE, GME, and CME guidelines and objectives related to each of the family-focused themes in each of the subspecialties. Trained research assistants conducted a document search using the instrument to code data. They periodically cross-referenced their findings to check interrater reliability and referred back to a sample of methodologically strong articles reflecting the family-focused themes and their operational definitions in order to gauge the validity of the coding system.

The first research aim was to determine the key literature themes with respect to the experiences and needs of families of individuals with mental illness. These key family focused themes were family stigma; family/caregiver burden; information exchange and referral; family stress, coping, and adaptation; family support; crisis response; and family psychoeducation.

The second research aim was to find how well these themes were reflected in medical education guidelines (Table 1). Of the seven family focused literature themes, two were specifically addressed in curricular guidelines: family caregiver burden and information exchange. Of these two, only information exchange was represented broadly across the medical education curriculum. Curriculum guideline content about information exchange with family members appeared across psychiatry, family practice, internal medicine, pediatrics, undergraduate medical education, and graduate medical education. Family caregiver burden was mentioned briefly in psychiatric undergraduate medical education. Family curriculum content did not exist across all phases of medical education. Undergraduate medical education most often reflected the family focused themes.

Among the four medical disciplines searched, psychiatry had the most extensive curriculum guidelines. Both internal medicine and family practice discussed the importance of information exchange between providers and families of individuals with depression. In pediatric sources, guidelines were discussed more generally and included the impact of mental illness on family and child functioning. The analysis did not reveal any evidence of curricular guidelines for the remaining five themes of family stigma; stress, coping, and adaptation; support; crisis response; and psychoeducation. It is possible that some curriculum content for these five remaining themes was subsumed under the theme of information exchange.

The analysis of curricular guidelines revealed little content about working with families of people with mental illness. The most extensive guidelines were found in the area of information exchange including providing information about diagnoses, learning from family members about their experiences, and using this information in treatment planning. Given these are activities that are common to physicians working with patients across specialties and diagnoses, one would expect them to be addressed in education guidelines and curriculum pertaining to mental illness.

It is encouraging that within curriculum guideline content about information exchange, there was an explicit emphasis on obtaining information from families as well as providing information to families. Such an emphasis aligns with efforts to provide a patient and family centered approach to care. In primary care, particularly internal medicine and family practice, the emphasis on information exchange in depression might reflect the relatively high prevalence of depression in the population (40) and the frequency with which depression presents in primary care settings (29, 30). On the other hand, one would expect that psychiatry would have more curriculum guidelines related to families and that this would appear across the medical education curriculum.

The findings of this study raise serious questions about curriculum objectives and the ability of physicians to work with families of individuals with mental illness. For example, the curriculum guidelines do not appear to have any content on family experiences of stigma, family needs for crisis planning, or multiple family group psychoeducation. It is possible the guidelines for information exchange and caregiver burden were thought to include the concepts of stress and the need for family support. It is also possible to hypothesize that family support may contribute at least indirectly to family coping and adaptation. However, because the curriculum content focusing on information exchange and caregiver burden is limited, it is important to address stress and family support individually.

The stigma attached to mental illness causes distress for individuals with mental illness and their families and it may impact help-seeking behaviors and adherence to treatment recommendations. The concept of stigma may be considered to be so universally understood that it is not necessary to include recommendations to address it. However, given the persistence of stigmatizing experiences reported by family members, family stigma should be addressed directly in medical education curriculum guidelines.

Crisis response is also a critical area for practitioners given the safety risks associated with mental illness and the vulnerability to stress-related decompensation. Many individuals with chronic mental illness rely heavily on their families for support, especially during crises, so the role of the family in preventing and managing crisis is critical (21). Furthermore, as the concept of relapse/remission is common to many medical illnesses, competency in this area is generally important to medical providers. Mental health providers can include family members in planning related to patient mental illness crises.

Given the strong evidence base for reduced patient distress and morbidity, as well as improved family knowledge and coping associated with multifamily group psychoeducation (1, 2, 33) over at least 15 or more years, this was a particularly glaring omission. Multiple group family psychoeducation should be incorporated in medical education curriculum guidelines. Providers can support the development of multiple family psychoeducation within mental health clinic sites, deliver psychoeducation services, and/or refer family members to psychoeducation groups.

Limitations and Strengths

This study has limitations that should be addressed. It is possible that not all of the family literature was retrieved in the search process of eight literature databases. However, without incorporating additional databases, the search yielded over 6,000 articles. Second, the search focused only on curriculum guidelines put forth by accrediting bodies and professional organizations and may not reflect the actual curricula in American allopathic medical schools. Searches of databases containing curricular information will be the subject of future work.

Third, data analysis required some interpretive judgments, such as the categorization of curriculum guideline data by key themes of the family-focused literature. To reduce subjectivity, research procedures included generating operational definitions for key constructs, training of data analysts, discussion of coding by the entire research team, and interrater checks for consistent coding.

It is important to note that originally the research team intended to include data from CurrMIT, a national curriculum database that allows medical schools to document and manage their curricula, to assess current curriculum, and compare to curriculum guidelines. Most American and Canadian medical schools have entered, at minimum, the names of the required courses and clerkships in their curricula. Nevertheless, the level of detail about each course is limited, so definitive conclusions cannot be drawn from a review of CurrMIT alone. Therefore, subsequent studies will be needed to address research questions about current medical school curricula using CurrMIT along with survey methods to obtain sufficiently detailed data.

This review of curriculum guidelines has several strengths. The research team searched across several medical disciplines/specialties, not just psychiatry. This is important given the fact that individuals with mental illnesses often present to primary care providers. The search targeted the continuum of medical education so as to capture the broadest learning experience for students and practitioners. The key concepts used within the search were relatively broad so as to obtain more complete information. This text analysis occurs with a strong theoretical underpinning of current literature on issues related to working with families of individuals with mental illness. This underpinning helped create a framework to evaluate curricular guidelines as they currently exist, and will be important to future efforts to recommend revisions to curriculum.

It appears that a number of the key family-focused themes have not been incorporated into medical school curricula, particularly issues related to stigma, family psychoeducation, and crisis response. All are critical areas that are needed to prepare families for the psychological, physical, financial, and legal challenges they are likely to face in the future and for which they will need the empathic support of the health care professionals involved. Considering the relatively high prevalence of mental illness in the population and the fact that primary care providers are delivering a significant share of mental health services, both psychiatrists and primary care providers should be educated to develop a broader array of skills for working with families. Knowledge about provider attitudes underlying these skills should be considered within the design of the curriculum content.

When family members are empowered to become mental health advocates through collaboration with patients and providers, they may help to increase political strength for improved mental health services. Families need to know how to access information regarding mental illness symptoms and mental health treatment as well as strategies for anticipating crisis, mechanisms for coping and stress management. Health care professionals need to be prepared to collaborate with patients and families in this process. National organizations may be resources for family members such as the National Alliance for the Mentally Ill (NAMI), National Mental Health Knowledge Exchange (KEN), National Mental Health Association (NMHA), and the National Alliance of Research on Schizophrenia and Depression (NARSAD). They provide information on the symptoms, treatment, and management of mental illness.

Little is known about differentiation of family interventions such as psychoeducation models with regard to specific diagnoses, age, gender, or cultural background. These elements may impact the type of support that families need from health care providers.

Information by diagnoses within multiple group psychoeducation models and within provider’s individual family outreach efforts can provide family members with information about symptoms of particular disorders, prognoses, and patterns of relapse and recovery. Family members of patients with schizophrenia can be referred to McFarlane model psychoeducation groups. Family members of patients with bipolar disorder can be referred to Goldstein and Mikolowitz model psychoeducation groups. Referral to specific advocacy agencies, support groups, and recommendations for self-help literature can also be guided by patient diagnoses.

There is evidence that living with a person with a mental illness impacts many members of the family. Therefore providers can reach out to parents, spouses, partners, grandparents, siblings, and/or children (19). This may include talking with a number of family members individually and/or together. It may be particularly important when the patient is from a minority culture that includes intergenerational and extended family structures (22). The existing family-focused literature provides a good starting point for updating medical school curricula with information about families of people with mental illness. More research on diagnostic and culturally specific family interventions is recommended. When medical education includes curriculum guidelines for understanding the experiences and meeting the needs of families of people with mental illness, it is more likely that medical providers will be prepared to work effectively with patients with mental illness and their families.