What do carers of people with psychosis need from mental health services? Exploring the views of carers, service users and professionals

Abstract

The development of anti-psychotic medications and deinstitutionalization has shifted the primary focus of mental health treatment from hospital to the community. As a consequence, carers have become an integral part of the care system (Thornicroft and Tansella, 2005). Historically, interventions for families with people with psychosis have tended to focus on service user outcomes that attempt to reduce or prevent relapse (Askey et al., 2007). As a consequence, carers often feel ignored or marginalized by services (Shepherd et al., 1995; Beck and Minghella, 1998; Henwood, 1998). This problem has recently been recognized, and it has been highlighted that there is a need for more involvement with carers of clients with mental illness (DoH, 1999). However, there continues to be a lack of knowledge about carers' needs and how professionals specifically meet carers' needs (Chambers et al., 2001). This article presents the results of a study aimed at exploring the views and experiences of carers, service users and professionals with regard to what carers of people with psychosis need from mental health services. It will initially review the literature on carer burden and needs, as well as interventions such as family intervention and carers' assessments/care plans which have been developed to address carer needs

Family interventions in early psychosis: specificity and effectiveness

“…As there are still relatively few well-controlled randomized trials of family intervention in early psychosis, there is a clear need for additional studies (Askey et al 2007(Askey et al , 2009Alvarez-Jimenez et al 2009). Further work is also required to identify the key mediators of change, and to determine the most effective format and timing of interventions.…”

The Need-Adapted Approach in Psychosis: The Impact of Psychosis on the Treatment and the Professionals

“…In a German focus group study (Angermeyer, Schulze, & Dietrich, 2003) the professionals were important sources of the "double stigma" experienced by relatives of patients diagnosed as having schizophrenia: they themselves suffered from public images of mental illness and the abusive psychiatric practices applied to the psychotic family member. The experiences of primary caregivers with regard to clinicians' responses seem to be contradictory (Askey & Gray, 2009;Gerson et al, 2009;Hultsjo, Bertero, & Hjelm, 2009;McCann, Lubman, & Clark, 2011Tanskanen et al, 2011). All in all, from research on the positive and negative experiences of carers it appears that they need to be sensitively listened to by professionals who are willing to act like human beings; they also need individually based information, knowledge of where to seek help, recognition of their contribution to the treatment, and organizational flexibility.…”

“…There is abundant evidence that the family members of psychotic persons have difficult and complex emotional experiences, including difficulties in accepting the situation, looking to the future, and changing roles within the family (Addington & Burnett, 2005;Addington et al, 2003;Askey & Gray, 2009;Gerson et al, 2009;Hultsjo, Bertero, & Hjelm, 2009;Read & Magliano, 2012;Read & Seymour, 2013;Sin, Moone, & Harris, 2008). Many carer-relatives have encountered at least moderate aggression and trau-3…”

“…22 ma, sometimes resulting in symptoms of posttraumatic stress disorder (Askey & Gray, 2009;Barton & Jackson, 2008;Loughland et al, 2009). The relatives themselves face prejudice and stigma (Addington & Burnett, 2005;Hultsjo, Bertero, & Hjelm ,2009;Read & Magliano, 2012;Sin, Moone, & Harris, 2008) occasionally resulting in isolation (McCann, Lubman, & Clark, 2012), barriers to help-seeking (Tanskanen et al, 2011), or problems in co-operating with professionals (Gerson et al, 2009).…”

“…Several studies have compared the views of professionals, clients, and the general public on various issues relating to psychosis: for example experiences of violence in psychiatric care (Omérov & Wistedt, 2004), and perceptions of the needs of patients (Macpherson & Lerescu, 2008;Macpherson & Slade, 2003) and of carers (Askey & Gray, 2009); also perspectives on early psychosis services (Langlands & Kitchener, 2008) and recovery (Noiseux et al, 2010). …”