Taking care of the carers: support for families of persons with early psychosis
Authors: Cheryl Corcoran
Journal: World Psychiatry (2017)

A decade ago, we published research on the experience of families seeking treatment for loved ones with early psychosis in the Northeastern US1. Our sample was ethnically diverse, consisting of mostly mothers, a few fathers, a brother and an aunt. The resounding message was frustration, especially in respect to encounters with the mental health system. The family of a young African-American woman described calling for help, and being met by a team of armed officers yelling and breaking down their door, then handcuffing their daughter. One mother described being told she had "three kids, two were good but one was not", and that she should "get used to it", as her son would "be like that the rest of his life". Another mother described waiting weeks to speak to the head psychiatrist, and then "the big cheese doctor came out and gave me the luxury of his presence for a few moments". After discharge, families described psychiatrists declining care as their loved one was "too sick to treat", struggles with third-party payers and bills, and difficulty in convincing their loved one to go to appointments. These themes were echoed in a contemporaneous qualitative research study with families of individuals with early psychosis in the Southeastern US, all African-American: they also described encounters with the law as the frequent first contact, grappling with stigma, and difficulty in accessing care2. In our study, across the board, families described a hunger for information and education: "a chance to ask questions would have been nice". Those families who reported getting useful information from doctors and staff expressed gratitude. They also welcomed the message of recovery: "I want any parent who has to hear for the first time that their beloved son or daughter is developing this illness to know that yes, they can become well"1. In the ensuing decade, the importance of including family members in early psychosis services has been increasingly recognized. In Europe, Australia and the Americas, there has been a concerted effort to develop specialty services for early psychosis that truly involve families. Among the earliest of these was the OPUS project in Denmark, initiated in 2000, for which integrated intervention comprises assertive community treatment, family involvement and social skills training. OPUS led to a decreased sense of burden among families, and greater satisfaction3. Researchers in Australia showed that, compared with "treatment as usual", combined individual and family cognitive behavioral therapy with psychoeducation led to less stress among family members and a greater sense of making "a positive contribution to the care of their relative"4. In the Northeastern US, early psychosis services have been developed and implemented by Dixon, Lieberman and colleagues, specifically the "Recovery After an Initial Schizophrenia Episode" RAISE Connection Program, that comprises two years of coordinated specialty care promoting engagement, participation, and recovery5. Key elements include shared decision making, assistance in education and employment, social skills training, outreach, crisis services and, for families, engagement, psychoeducation, family nights, and as-needed consultation. RAISE is collaborative, person-centered and sensitive to cultural and developmental issues. It improves symptoms and occupational/social function among participants. Families benefit as well. Families' experiences with RAISE were assessed in a recent qualitative research study6, using similar methods as our studies from a decade earlier, also with an ethnically diverse cohort of mostly mothers, a few fathers, a sibling and a cousin. The contrast in themes over time was dramatic, illustrating the beneficial effects of caring also for the carers. In RAISE, families described fear, worry, guilt, and a sense of helplessness before they arrived6. They were relieved to meet RAISE staff, who were warm, friendly and supportive, putting them at ease. Staff were seen as responsive, going above and beyond to help, showing they really cared, and increasing trust. Families in RAISE valued the outreach and support, frequent communication, flexibility and individualization of care, including concrete and practical assistance, and expressed a desire for individual counseling. And they wanted even more of this, in what the authors describe as "yes but more". Families in RAISE also valued the flexibility and tailoring of services to client and family needs, including time and location, and the shared decision-making, including for medications, which were provided onsite without cost. Families described that it made a big difference to be listened to. As in the earlier studies, families also grappled with the tension of respecting autonomy, while also wanting to help and protect their loved ones, but now they were actively engaged in care and the promotion of recovery. From these and other studies in Australia, Europe and the Americas, and now also Asia, we know that, for early psychosis, we can succeed in caring for families as well. The question then is how to broaden access to early psychosis services. It is important to demonstrate to policy makers that early psychosis programs are cost-effective, and RAISE Connection now has many sites across New York State. Also, barriers to access, including stigma and geographical distance, must be addressed. In Australia, Orygen has moved its youth mental health services, including early psychosis services, out of medical centers and into the community, with great success (see oyh.org.au). Another proposal is to engage religious institutions, including churches, temples, mosques and synagogues7. Religious centers provide support for young people and families, including activities and networks, and often exist where mental health resources are minimal, including rural areas. Another promising option is to use manuals or web-based services to help families of individuals with early psychosis. This has proven effective in Hong Kong, with the delivery of psychoeducation to a large number of families, in a culturally sensitive manner that reduces stigma, leading to reduced family burden and improved patient outcome8. In low- and middle-income countries, including in Africa, families might best be helped through a public health approach of population-level psychoeducation to reduce stigma, integration of services into existing health care, free access to medications, and practical support and training that enables families to care for their loved ones9. In Chile, for example, the GES (Garantías Explícitas en Salud) program, backed by a state law, has provided global access to free care for schizophrenia, including "suspected cases", leading to lower rates of re-hospitalization, and better outcomes for patients and families10. These are successful and promising approaches to caring for families of young people with early psychosis. Our task is to broaden access to these services worldwide in a culturally sensitive and cost-effective manner. As clinicians, we must be willing to listen to patients and families and learn from them, and provide them with material support and information, doing so in a flexible, respectful and empowering manner. We must also fight stigma, and advocate for and promote recovery for our patients. Cheryl Corcoran Department of Psychiatry, Columbia University, and New York State Psychiatric Institute, New York, NY, USA