Illness careers and continuity of care in mental health services: A qualitative study of service users and carers

Abstract

Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user involvement. In this paper we utilise the concept of the ‘patient career’ to frame patient accounts of their experiences of the mental health care system. We aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. As part of a large longitudinal study of continuity of care in mental health a sub-sample of 31 users was selected together with 14 of their carers. Qualitative interviews framed around the service user's illness career explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives. Five key themes emerged: relational (dis)continuity; depersonalised transitions; invisibility and crisis; communicative gaps and social vulnerability. One of the important findings was the fragility of continuity and its relationship to levels of satisfaction. Supportive, long-term relationships could be quickly undermined by a range of factors and satisfaction levels were often closely related to moments of transition where these relationships were vulnerable. Examples of continuity and well managed transitions highlighted the importance of professionals personalising transitions and situating them in the context of the daily life of service users. Further research is required to identify how best to negotiate these key points of transition in the future.

Introduction

Continuity of care has become an important aim of health policy and service delivery (Department of Health, 1990, Department of Health, 1995, Department of Health, 2001) as well as a key criterion for service evaluation (Johnson, Prosser, Bindman, & Szmukler, 1997). Yet, it is generally agreed that the concept has lacked systematic definition (Crawford, Jonge, Freeman, & Weaver, 2004; Freeman, Shepperd, Robinson, Ehrich, & Richards, 2000) and, as Haggerty et al. (2003) emphasise, without clear definitions policy solutions are likely to remain elusive. Early conceptualisations of continuity of care tended to equate it with continuous care by the same person or persons. Over time this gave way to a view of continuity as involving the coordination of the patient's progress through the system (Adair et al., 2003). By the early 1990s it began to be seen as a potential measure of system-level reform.

In recent years research on continuity has proliferated in a variety of health care settings. Operationalising the concept has proved difficult and in relation to mental health services researchers have highlighted differences in continuity at discharge (Sytema & Burgess, 1999; Sytema, Micciolo, & Tansella, 1997); as well as cross-boundary continuity between primary and secondary care (Bindman et al., 1997), psychiatric and emergency services (Heslop, Elsom, & Parker, 2000), and inpatient and community settings (Kopelowicz, Wallace, & Zarate, 1998). Others have focused on particular features of care including: ‘a sustained patient–physician partnership’ (Nutting, Goodwin, Flocke, Zyzanski, & Stange, 2003); maintenance of contact, consistency in the member of staff seen and success of transfer between services (Johnson et al., 1997); and ‘adequate access to care… good interpersonal skills, good information flow and uptake between providers and organizations, and good care coordination’ (Reid, Haggerty, & McKendry, 2002). Discontinuity has been defined as gaps in care (Cook, Render, & Woods, 2000). A systematic review of the literature found that continuity of care has been defined in terms of service delivery, accessibility, relationship base and individualized care (Joyce et al., 2004). In contrast, qualitative studies have found that service users emphasise the importance of building a long-term relationship with a professional and express frustration at having to repeatedly review their medical histories during transitional periods (Kai & Crosland, 2001). And while there are apparent differences between professionals' and service users' views over what constitutes continuity and the most appropriate sites for care, users describe having to engage in tactics such as ‘acting up’ in order to gain appropriate services (Lester, Tritter, & Sorohan, 2005). Reviews of continuity of care studies have linked the lack of clarity in its conceptualisation and operationalisation to a deficit of user involvement (Freeman et al., 2000, Ware et al., 1999). In response, researchers have proposed a ‘multi-axial definition’ of continuity of care for mental health comprising: experienced, cross-boundary, flexible, information, relational, contextual, long-term and longitudinal (Freeman, Weaver, Low, de Jonge, & Crawford, 2002). Others have emphasised that continuity of care is best understood as a multidimensional concept (Bachrach, 1981). Here researchers have combined factors such as breaks in service delivery with the experience of care, maintenance of contact, consistency in the member of staff seen, transition and integration between services, adherence to service plans, and management of service users' needs (Crawford et al., 2004, Johnson et al., 1997). Domains of continuity have been proposed including: knowledge, flexibility, availability, coordination and transitions (Ware, Dickey, Tugenberg, & McHorney, 2003). These approaches, coupled with a view of continuity as involving the coordination of the patient's progress through the system (Adair et al., 2003), resonate strongly with the notion of a patient career.

In this paper we utilise the concept of the ‘patient career’ to frame patient accounts of their experiences of the mental health care system. We follow Hughes's (1937) definition of a career as a series of movements between stages in a sequence and its use in relation to patient experiences in mental health institutions (Goffman, 1970). A number of studies have utilised the concept in mental health settings to highlight the relationships that are formed and changed as individuals negotiate the system (Gove, 2004), and the changes that occurred to patient pathways as a consequence of de-institutionalisation (Pavalko, Harding, & Pescosolido, 2007). As Pescosolido (1991) argues, individuals negotiate illness career pathways drawing on social networks and ties in the context of their social location and their health beliefs and the study of such illness careers requires longitudinal, multi-method and analytically flexible approaches. In this study we aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. The interviews explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives.