Hearing Voices: Qualitative Inquiry in Early Psychosis

1. Recognition of Psychosis in the Pathway to Mental Health Care

1 recognition of psychosis in the pathway to Mental Health care Katherine M. Boydell, Elaine Stasiulis, Brenda M. Gladstone, Tiziana Volpe, Jean Addington, Paula Goering, Terry Krupa, and Elizabeth McCay Introduction In the field of psychiatry, detection and intervention in the early stages of schizophrenia offer hope for substantial improvements in schizophrenia and schizophrenia spectrum disorders (Addington, 2007). Studies indicate that 2 percent of adolescents in Canada experience psychosis, which is often a precursor to schizophrenia (McMaster University, 2003). Psychosis is described as a disorganization of thoughts and emotional responses and the inability to recognize reality (Lines, 2000). Common symptoms include significant changes in behaviour, social isolation, feelings of suspicion , unusual beliefs, hearing voices, seeing things, and mood changes. The process of becoming psychotic creates profound psychological changes that are frightening, difficult to comprehend, and isolating. The consequent disruption of social networks, including family and peer relationships, as well as of schoolwork and occupational functioning, can be devastating (Addington, Leriger, and Addington, 2003; Addington, Young, and Addington , 2003). First episode psychosis (FEP) has been identified as a “critical period” for intervention to prevent further impairments and the best time to instigate bio-psychosocial interventions. However, many youth with psychosis do not appear to seek help. Their family and friends fail to comprehend the enormity of the changes occurring, and their psychosis is often overlooked or misdiagnosed. As a result, there are significant delays between the onset of symptoms and the initiation of treatment. This duration of untreated psychosis (DUP) is critical, given the evidence suggesting a strong relationship between the length of untreated psychosis and poor 9 10 Boydell et al. clinical and social outcomes (Addington, van Mastrigt, Hutchinson, and Addington, 2002). Consequently, it is important to know the extant barriers and facilitators in the pathway to accessing mental health care. Background Our current understanding of help seeking by youth with psychiatric problems in general and with psychosis in particular is limited. Yet understanding how the various services and supports are obtained in the early stages of psychosis is critical for early intervention (Lincoln and McGorry, 1995). Worldwide studies have revealed that individuals suffering from a FEP experience an alarming delay between the onset of psychotic symptoms and the initiation of treatment (Addington, van Mastrigt, and Addington , 2004; Lieberman and Fenton, 2000; Malla, Norman, McLean, Scholten, and Townsend, 2003; Norman and Malla, 2001). Examining the factors that contribute to this delay is essential, as early psychiatric intervention not only significantly aids recovery in FEP but may also reduce subsequent chronic symptomatology (Birchwood, 1992; Birchwood, and Macmillan, 1993; Falloon , 1992). Furthermore, understanding the help-seeking process is fundamental to designing more effective service delivery as well as to addressing the needs of the underserved and assisting youth and their significant others in making decisions about seeking mental health intervention (Richardson , 2001). Actively learning from individuals and their significant others will assist service providers and policy makers in planning more efficient pathways to mental health services (Addington et al., 2002). There is currently no comprehensive theoretical model that addresses methodological and conceptual issues in understanding pathways to treatment for youth with FEP. Such a model should include the involvement of young people and their significant others to ensure that services meet their needs (Lincoln and McGorry, 1995). Christine Lincoln and Patrick McGorry (1995) have suggested that the experiences inherent in the narratives of consumers of care service and their caregivers are fundamental to future research that seeks to understand how pathways are experienced and negotiated (Lincoln and McGorry, 1999). To understand the helpseeking behaviour of young people, one must consider concurrently the various ways in which they come to obtain care, the influence of the various community-based factors, and the impact of circumstances that influence both their modes of entry and their ties to their social network (Ho and Andreasen, 2001; Morgan, Mallett, Hutchinson, and Leff, 2004). This study aims to address this gap in knowledge by using the Network Episode Model (NEM) (Pescosolido, 1992; 1998), which has been adapted for children and youth as a framework to explore the illness career, role of sig- recognition of Psychosis in the Pathway to Mental health care 11 nificant others, and the service and support system for youth experiencing FEP (Costello, Pescosolido, Angold, and Burns, 1998). The NEM reconceptualizes earlier pathway models, systematically considering the varied social processes through which individuals come to enter psychiatric treatment (Aday and Andersen, 1974; Andersen...