- Email: [email protected]
Referral to rehabilitation following traumatic brain injury: a model for understanding inequities in access
Social Science & Medicine 56 (2003) 2201–2210
Referral to rehabilitation following traumatic brain injury: a model for understanding inequities in access Michele Fostera,*, Cheryl Tilseb a
Centre of National Research on Disability and Rehabilitation Medicine (CONROD), The University of Queensland, Herston, Qld 4006, Australia b School of Social Work and Social Policy, The University of Queensland, Brisbane 4072, Australia
Abstract Identifying inequities in access to health care requires critical scrutiny of the patterns and processes of care decisions. This paper describes a conceptual model, derived from social problems theory, which is proposed as a useful framework for explaining patterns of post-acute care referral and in particular, individual variations in referral to rehabilitation after traumatic brain injury (TBI). The model is based on three main components: (1) characteristics of the individual with TBI, (2) activities of health care professionals and the processes of referral, and (3) the contexts of care. The central argument is that access to rehabilitation following TBI is a dynamic phenomenon concerning the interpretations and negotiations of health care professionals, which in turn are shaped by the organisational and broader health care contexts. The model developed in this paper provides opportunity to develop a complex analysis of post-acute care referral based on patient factors, contextual factors and decision-making processes. It is anticipated that this framework will have utility in other areas examining and understanding patterns of access to health care. r 2002 Elsevier Science Ltd. All rights reserved. Keywords: Brain injury; Social problems theory; Rehabilitation
Introduction The allocation of care is based on the belief that health professionals make ‘scientifically valid judgements as to what constitutes need, what treatment modalities are most likely to be effective, and which cases deserve priority’ (Mechanic, 1989, p. 23). Indeed, the central role of health professionals is fundamental to reassuring the public that decisions about care are based on medical facts alone, rather than upon economic considerations (Harrison, 1995). In reality, professional autonomy allows health professionals to classify some demands as needs whilst rejecting others and to alter this classification depending upon available resources (Harrison, 1995). While decisions rely heavily upon processes *Corresponding author. Tel.: +61-7-3346-4794; fax: +61-73346-4603. E-mail address: [email protected] (M. Foster).
of diagnosis and interpretation of symptoms, they commonly also involve selecting those who will benefit most from treatment (Ducket, 1995; Sax, 1990), and defining ‘deservedness for treatment’ (Hughes & Griffiths, 1997). This is most apparent in the area of disability, where medical values, interpretations and labelling are argued to be core aspects of defining disability and determining the appropriate treatment or care (Barton, 1996; Marks, 1997; Munford & Sullivan, 1997). While there is a preference among health professionals to understand or measure disability in terms of fixed functional capacities, labels and definitions of problems are contested and also changeable (Marks, 1997). The contested nature of disability is fuelled by the uncertainty that often surrounds diagnosis and prognosis of disabling conditions. With health professionals promoted as not only the experts to assess and treat individuals, but also as ‘agents of rationing’ to limit access to resources (Harrison, 1995; Hunter, 1995),
0277-9536/03/$ - see front matter r 2002 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 0 2 ) 0 0 2 3 6 - 8
2202
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
issues such as potential and deservedness become more salient when resources are stretched (Griffiths & Hughes, 1994). While traumatic brain injury (TBI) is considered to represent an etiology rather than a disability, it has long been identified as a disability category in the rehabilitation field (Ylvisaker & Feeney, 1995). Decisions about the allocation of care are also inherently linked to interpretations and definitions of impairment and disablement. For the majority of people with TBI, early referral to rehabilitation is a critical part of facilitating recovery and improving outcome (Hall & Cope, 1995; Giles, 1994; High, Boake, & Lehmkuhl, 1995). Yet, it is acknowledged that only a small proportion of people who could benefit from rehabilitation gain access (Cope, 1995; Giles, 1994). Variations in access cannot be adequately explained by clinical factors related to the individual, with non-clinical factors, sometimes unrelated to the individual, also contributing to variations (Wrigley, Yoels, Webb, & Fine, 1994). Place of treatment and the distribution of rehabilitation services often influence variations (Osberg, DiScala, & Gans, 1990). More importantly, a range of opinions and interpretations of potential and outcome result in highly selective processes that determine where people go after injury (Caplan, Callahan, & Haas, 1987; Haas, 1988; Hughes & Griffiths, 1997). Although rehabilitation can commence during the early acute care stage of treatment, with referrals to rehabilitation professionals and pharmacological intervention initiated to address coma (Mackay, Bernstein, Chapman, Morgan, & Milazzo, 1992), it is commonly considered to be a specialised continuum of post-acute care that follows the acute care phase of medical management (Melvin, 1988). For people with TBI, rehabilitative care is a core category of post-acute care, and represents a specialised type of post-acute care referral, which may be differentiated from other types of care that have a maintenance, monitoring, or supportive rather than rehabilitative focus. The continuum includes services such as acute in-patient rehabilitation, sub-acute rehabilitation and a range of specialised outpatient programs focused on community re-entry, and behavioural, cognitive and vocational rehabilitation. Yet, differential access is common, with some people referred to specialist rehabilitation services at the end of acute care treatment, and others referred to generic health services, including allied health professionals and general medical practitioners, or not referred to any services (Foster, 2001). Unlike acute medical care, decisions about referral to rehabilitation generally involve consideration of more abstract issues such as quality of life, despite there being a lack of consensus regarding its meaning and application in treatment decisions (Pain, Dunn, Anderson, Darrah, & Kratochvil. 1998). Referral decisions are, therefore, inherently complex and need to
be understood as a dynamic phenomenon shaped, not only by characteristics of the individual, but also the interactions and interpretations of health professionals who operate within unique organisational and broader health care contexts. The purpose of this paper is to present a model for explaining the patterns of referral from acute care to rehabilitation following TBI that incorporates characteristics of the individual, the interpretative activities of health professionals and the contexts of care. The model proposed is a useful framework to critically assess referral of people with TBI at the end of acute care treatment, henceforth referred to as post-acute care referral. The rationale is that by developing a better understanding of post-acute care referral decisions and the factors that influence these decisions, inequities in access to rehabilitation may be identified and addressed more effectively. The paper reviews previous approaches to understanding referral decisions following brain injury and presents a reconceptualisation of post-acute care referral, based on social problems theory. This theory offers a theoretical basis for understanding the central role of practitioners in referral decisions, the influence of context and the dynamic nature of referral decisions. The model is applicable, therefore, for monitoring the allocation of care for other populations.
Previous approaches to understanding patterns of referral following TBI Only a small number of studies have investigated referral following TBI (DiScala, Osberg, & Savage, 1997; DiScala, Osberg, Gans, Chin, & Grant, 1991; Hughes & Griffiths, 1997; Osberg et al., 1990; Unsworth, Osberg, & Graham, 1997; Wrigley et al., 1994). A review of these studies, and consideration of studies about referral following other types of brain injury such as stroke (Cavestri et al., 1997; Bonita, Anderson, & North, 1987; Unsworth, Thomas, & Greenwood, 1995) revealed several key themes about studies of referral. There has been a tendency to rely primarily on survey approaches and quantitative data types, using the person with disability or the health professional as the unit of analysis. Studies on referral and TBI have tended to focus more on explaining referral as an outcome of the characteristics of the person with TBI, and less on factors unrelated to the individual such as those associated with the context of care. The central role practitioners occupy, not only in interpreting the characteristics of the individual, but also in assimilating and mediating the unique contingencies within the decision-making context, has received limited attention. This paper argues that as a result, most studies have over-simplified the process of making decisions about care and the factors influencing these decisions.
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
Previous research on referral to rehabilitation following brain injury using retrospective survey approaches (DiScala et al., 1997, 1991; Osberg et al., 1990; Wrigley et al., 1994) and hypothetical case studies (Unsworth et al., 1995) have established that clinical and nonclinical factors related to the person with TBI may contribute to variations in decisions about referral to rehabilitation. Clinical factors include severity of injury and degree and type of impairment, while non-clinical factors may include a range of social and demographic factors such as age, place of residence, ethnicity, financial status and availability of a carer (Caplan et al., 1987; DiScala et al., 1991; Haas, 1988; Osberg et al., 1990; Unsworth et al., 1997; Wrigley et al., 1994). It is also suggested that factors such as mobility, ability to perform daily tasks and availability of social supports, and degree of disability and age, may be more important than other factors in determining referral following stroke (Cavestri et al., 1997; Unsworth et al., 1995). Yet, the extent of influence of non-clinical factors on decisions may not be fully appreciated in survey or retrospective studies, since judgements based on clinical factors are often intermingled with normative assessments of the individual’s character or social identity (Mechanic, 1992). Some of these studies have also speculated that factors unrelated to the person with TBI, contribute to variations in referral. The involvement of a rehabilitation physician and the place of treatment, for example, have been found to facilitate referral to rehabilitation following TBI (Foster, Fleming, Tilse, & Rosenman, 2000; Wrigley et al., 1994). Overall, the strength of these studies is the valuable information provided concerning the patterns and predictors of referral, which is pivotal in monitoring trends in access to care. The weakness, however, lies in treating factors influencing referral as ‘objective facts’, rather than adopting close scrutiny of what is done with these facts in actual decision-making processes. Without a more in-depth approach, it is difficult to understand what interpretations are drawn about the individual, and how these might be altered depending upon unique features of the organisation and other contextual factors. Previous studies examining the role and influence of health professionals on referral decisions following brain injury have drawn on social judgement theory (Unsworth et al., 1995) and discourse analysis (Hughes & Griffiths, 1997). These studies have suggested that professionals select and prioritise characteristics of the individual in making decisions (Unsworth et al., 1995). Hughes and Griffiths (1997) argue that health professionals routinely engage in interpretative activities, consider clinical and non-clinical factors collectively, and draw social and normative conclusions about a person’s identity and deservedness. In general, the conclusion is that the type of information used in
2203
decision-making changes depending upon the situation and that referral decisions emerge, not so much from the application of universal criteria, but from a process of interpretation and negotiation. While these studies attempt to capture the dynamic nature of referral decisions, on the whole, they do not explain adequately how orientations are influenced by the contingencies of the decision-making context. In making referral decisions, it is suggested that professionals are engaged in mediating ‘diffuse contextual and organisational considerations’ (Griffiths & Hughes, 1993, p. 435), which has more to do with the pressures impinging on them rather than considerations of the individuals, such as those with TBI. The indication from previous studies on referral following TBI is that the resource context plays a particularly important role in referral decisions. Availability of, and proximity to rehabilitation services, for example, has been shown to contribute to variations in referral (DiScala et al., 1997; Wrigley et al., 1994). At a broader level, the activities of health professionals are currently being shaped by sweeping changes in health service delivery (Ben-Tovin & Elzinger, 1994; Griffin, 1993; Hunter, 1995; Patford, 1999; Williams & Shah, 1995), with significant restrictions being realised in the area of professional advocacy (Banja, 1999). These issues make it imperative to incorporate the influence of the trends and dominant values that underpin service delivery on referral decisions. For a more complex understanding of the allocation of care, innovative models that incorporate, but also move beyond a focus on factors related to the individual, to incorporate factors related to the health professionals and the context of care are needed. Such a model would permit investigation of referral based on a number of ‘objective facts’ as a way of monitoring referral trends, but also allow opportunity to build on this understanding by providing a framework to explore the process of referral as it occurs within the contexts of care.
A theoretical framework for reconceptualising the understanding of post-acute care referral following TBI Reconceptualising the understanding of post-acute care referral following TBI, and the factors influencing referral, incorporates three main components: characteristics of the individual with TBI, the activities of health professionals in the process of referral, and the context of care in which referral decisions are made. Central to the approach are the following propositions. Firstly, while clinical and non-clinical characteristics of the person with TBI are important, decisions about care are shaped by the contexts of care, namely the organisational and broader health care contexts. Secondly, health professionals are central in
2204
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
decision-making and typically engage in interpretative processes as part of making decisions about care. Health professionals also continually assimilate and mediate characteristics of the contexts of care, and thus their interpretative activities are fundamentally shaped by these contexts. The third point is that a better picture of referral and a more thorough understanding of factors influencing referral decisions is obtained by combining the ‘objective view’ used primarily in retrospective or survey approaches, with a process view, used to gain an in-depth understanding of the interpretative activities of professionals. Integrating these components into a model of referral following TBI is inherently complex and, therefore, requires an appropriate theoretical framework. Social problems theory provides a potential framework to capture the complexity and dynamic nature of referral following TBI. In social problems theory a social problem ‘‘is a social phenomenon or social condition that is perceived to potentially or directly threaten the social order’’ (Jamrozik & Nocella, 1998, p. 18). With disabling conditions viewed historically as a burden on society, the threat to the social order is apparent. Furthermore, issues of disability and disabled people are, according to Munford and Sullivan (1997, pp.1920), ‘both socially constructed and socially created’, largely as a result of the medical paradigm and the practices that result from that ideology. The distinct contribution of social problems theory to the study of referral following TBI relates to its capacity to assist in understanding the central role of health professionals as decision-makers, interpreting individual characteristics and mediating the context of care. Furthermore, social problems theory offers a way to define, understand and study social problems, which is decidedly different from other perspectives (Schneider, 1985). The early theories of social problems suggested that the essence of social problems could be found in objective social conditions and thus targeting these conditions was the way to alleviate the problem (Best, 1995; Jamrozik & Nocella, 1998; Manning, 1985; Rubington & Weinberg, 1995). Such ‘objectivist’ approaches have been criticised, however, as ‘truncated perspectives’ with the responses arising from such perspectives typically focused on managing those with the problem rather than solving the problem (Jamrozik & Nocella, 1998). The constructionist theoretical framework, in contrast, moved on from earlier approaches to incorporate the concept of ‘claims-making’, understood as a contested process that ultimately results in the definition of the problem and the allocation of resources (Best, 1993; Ibarra & Kitsuse, 1993; Spector & Kitsuse, 1987). This development led to a focus on the ‘‘myriad of everyday interactional matters that constitute social problems on a smaller scale’’ (Holstein & Miller, 1993, p. 152). Within this perspective an understanding of
definitions and responses to problems is obtained by focusing on the activities of the ‘claims-makers’ (in this case the health practitioners) and what is interpretively done with selected information to assign people to categories (Best, 1987, 1993, 1995). Based on the work of Best (1987), there are three principal categories that assist with the critical examination of the processes of ‘claims-making’. The principal categories include: (1) Statements or basic facts that serve as the foundation for discussion and interpretation known as ‘grounds’. (2) Statements that justify specific conclusions from the facts known as ‘warrants’. (3) Statements of action to address the defined problem known as ‘conclusions’. The basic facts or grounds include definitions, examples or numeric estimates (Best, 1987). Definitions set the boundaries of the problem, while examples and numeric estimates provide more detail about the nature and scope of the problem. In relation to TBI, grounds represent the clinical and non-clinical characteristics of the individual. Warrants, in contrast to grounds or the basic facts, are usually more implicit and value-laden (Best, 1987). Warrants are represented in Griffiths and Hughes (1994) work, as the moral or cultural statements, such as notions of deservedness, used to persuade others about the nature of the disability and the appropriate referral solution. Like warrants, these statements act as justifications for action. A decision not to refer to rehabilitation likewise may include accounts of injury severity (grounds), yet framed in terms of poor potential for independence (warrant). Warrants also incorporate the interactive aspect of ‘claims-making’, whereby interpretations are negotiated with other actors. The constructionist view, therefore, represents a dynamic view of social problems, one that focuses ‘‘not on social problems per se but on the processes through which social problems are defined and on social actors who define them’’ (Jamrozik & Nocella, 1998, p. 2). Yet, social problems theorists highlighting the importance of ‘claims-making’ have since argued that interpretative activities are ongoing, locally managed and sensitive to practical circumstances and contingencies (Holstein & Miller, 1993, p. 164). The suggestion that health professionals engage in ongoing interpretative activities highlights the limitations of studies that adopt ‘objectivist’ positions alone. The acknowledgement of context indicates, furthermore, that health professionals are not immune to pressures inherent in the decision-making context. Indeed, the contextual view of social problems suggests that negotiation processes need to be understood within the unique social and political contexts in which they are embedded
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
since ‘claims-makers’ articulate their claims in ways that correspond with these contexts (Best, 1993; Miller & Holstein, 1993). The contexts of care, therefore, effectively operate as a ‘frame of reference’, and definitions of problems and the justifications for a particular course of action will often reflect the unique contingencies of these broader contexts (Best, 1987). Health practitioners, for example, may be influenced by different values, current standards or consensus about appropriate referral to rehabilitation following TBI. Indeed, justifications for a referral decision may be based on factors other than those related directly to the individual with TBI. It has also been suggested that the place of treatment influences the process of referral, and that variations in practice may be attributable to trends and expectations associated with service delivery. The main components of the model proposed for reconceptualising referral to rehabilitation following TBI, based on social problems theory, are shown in Fig. 1.
Health care environment ‘frames of reference’
Organisational context ‘boundaries of practice’
Claims-making: Characteristics of the individual
Characteristics of post-acute care
Grounds Warrants Conclusions
Fig. 1. Major components of a model of referral following TBI based on social problems theory.
A conceptual model for understanding post-acute care referral following TBI The conceptual model developed brings together the key themes and concepts from the literature on TBI and from social problems theory, important in explaining post-acute care referral following TBI and factors influencing referral. The model, shown in Fig. 2, attempts to integrate different perspectives of post-acute care referral following TBI, such that a more complex understanding of the factors influencing referral to rehabilitation is developed from investigating both the profile and the process of referral. Firstly, the conceptual model posits a direct relationship between post-acute care referral and the individual with TBI. From this perspective, the profile of post-acute care referral can be described, and explained primarily on the basis of ‘objective facts’. Secondly, the model incorporates a direct relationship between postacute care referral and the interpretative processes of health professionals. From this perspective there is an indirect relationship between the individual with TBI and post-acute care referral since, based on social problems theory, health professionals occupy a central role as the interpreters of characteristics. This perspective also proposes an indirect relationship between postacute care referral and the contexts of care, in this case, the organisation and broader health care contexts. It is suggested that health professionals, whilst engaged in processes of interpreting characteristics of the individual, are influenced by these contexts. The relationship between health professionals and post-acute care referral is assumed to be a dynamic rather than a linear or rational process. Combining a focus on the profile of referral and the breadth of factors influencing this profile, with an in-depth focus on the process of referral is a particularly important aspect of the conceptual
Health care environment • •
Resource context Policy context
Contexts of care Organisational context • Place of treatment • Pattern of involvement of rehabilitation & health professionals Health professionals & Process of referral Individual with TBI Clinical & non-clinical characteristics
2205
Post-acute care referral Processes of interpreting the characteristics of the individual, and the interaction with the contexts of care
• Discharge destination • Type of post-acute care • Type of rehabilitation
Fig. 2. A conceptual model for understanding post-acute care referral following TBI.
2206
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
model. This also has methodological implications in applying the model in future research. Post-acute care referral In the conceptual model, post-acute care referral is conceptualised as a distinct category of care intended to address ongoing care needs of the individual after the conclusion of acute care treatment. As was suggested earlier, some people may be referred to specialist rehabilitation care, while others may be referred to more general types of post-acute care. The position taken in this paper is that to understand equity of access to rehabilitation following TBI, it is necessary to identify three characteristics of post-acute care referral at the end of acute care: the discharge destinations of people with TBI, the type of post-acute care referral and the type of rehabilitation referral. Distinguishing discharge destination from the type of post-acute care referral is an important basis for identifying inequities in access, since, as argued in this paper, differential patterns of care are common. Types of post-acute care referral may include services provided by general medical practitioners and allied health professionals, community nurses, domiciliary services and in-patient rehabilitation programs, and is a category of care recommended as part of planning discharge from the acute care setting to another location. It is, therefore, distinct from the location the person is transferred to after acute care. Referral to rehabilitation is conceptualised as referral at the end of acute care treatment to a specialist system of care directed primarily toward minimising the disabling impact of TBI. This suggests rehabilitation is a process of continued care that involves professionals assisting individuals to overcome disability and to achieve functional and meaningful interaction with their environment (Greenwood & McMillan, 1993). Different types of rehabilitation may include in-patient rehabilitation and specialist programs and services provided in a range of hospital, organisational and home settings. Characteristics of the person with TBI Within the medical and rehabilitation paradigms, clinical characteristics have traditionally been important indicators of independence, overall potential and the capacity to regain function and maintain productive employment (Susman, 1994). Based on the model, from the profile perspective clinical characteristics relevant to referral following TBI have been defined as the initial severity of injury and the degree of impairment associated with TBI. Non-clinical characteristics reflect the social identity and value of the individual within society (Griffiths & Hughes, 1994). Social and demographic characteristics of the individual are often taken
into account as risk factors when determining care (Clark, Potter, & McKinlay, 1991). The model also acknowledges, however, that while referral decisions may be understood on the basis of objective individual factors, health professionals ultimately select and interpret these factors. Therefore, in combining the process perspective, the model provides the framework for investigating what patient information is selected, how problems of TBI are interpreted and how the referral decision is formulated. Interpretative activities of health professionals in the process of referral The interpretative processes of health professionals are conceptualised as the processes of selecting information (grounds), interpreting information (warrants) and determining referral (conclusions). Social problems theory posits that claims-makers commonly select and interpret specific aspects of the condition overlooking other reportable features, these activities creating justifications for action (Best, 1995). However, as was argued earlier in this paper, in their central role as ‘gatekeepers’ of resources, health professionals are often thought to alter their interpretations of problems depending upon the availability of resources or other organisational and political pressures to ration resources. These factors represent the unique contexts of care within which decisions are made, and thus, they are often reflected in the definitions of problems and the justifications for action (Best, 1987). By focusing on the interpretative processes of professionals, therefore, the model also allows for closer scrutiny of the organisational and health care contexts within which professionals negotiate referral, the particular options and constraints these contexts engender, how these interact with the interpretative processes of practitioners, and the pattern of referral they produce. A further aspect of the interpretative role of health professionals is consideration of who is involved. Best (1987, p. 116) has argued that consideration of ‘‘the ‘claims-makers’ is a fundamental aspect of the sociology of social problems since it effectively impacts on rhetorical work’’, influencing the orientation toward problems and the type of solutions considered. This is discussed further below as a dimension of the organisational context. Organisational context The organisational context in this model is defined as the acute care hospitals that are responsible for the initial medical treatment of people with TBI, and where post-acute care referral is determined. The unique features of treatment settings are likely to influence clinical decision-making (Haas, 1988) and these shape
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
clinical orientations and practice (Clark et al., 1991). Acute care facilities with an on-site rehabilitation unit, for example, have been found to facilitate referral to rehabilitation (Foster et al., 2000; Wrigley et al., 1994). Other unique features of the organisational context may include the availability and involvement of rehabilitation professionals, which has also been found to be a determinant of referral to rehabilitation (Wrigley et al., 1994). The involvement of health professionals and their influence on referral decisions has not, however, been thoroughly investigated. Based on social problems theory, ‘claims-makers’ commonly negotiate different understandings of the problem in order to persuade others toward a desired solution (Best, 1987). A multidisciplinary team, therefore, will potentially negotiate multiple interpretations of the problem. This suggests the model needs to allow not only for a description of the involvement of different health professionals, but also an in-depth understanding of how the professionals involved negotiate definitions of the problem and formulate the solutions. Health care context In the model, the health care context is conceptualised as the external resource and policy contexts within which professionals engage in decision-making. The resource context is understood to exist at the service provision level. It incorporates two dimensions, (1) the availability of post-acute care and rehabilitation services, and (2) the relationships between health professionals and the resource context, that is, post-acute care and rehabilitation services. Health professionals are dependent upon resources provided by other institutions or professionals that make up the service environment to carry out their tasks successfully (Reitan, 1998). It has been speculated that referral to rehabilitation following TBI, for example, is linked to the broader distribution and accessibility of post-acute care and specialist rehabilitation services (DiScala et al., 1997). Reliance on familiar routines, and familiar relationships between decision-makers are also key themes identified in previous research on referral to outpatient services (Grimmer & Bowman, 1996). The nature and quality of resources, and the nature and extent of relationships developed among service providers are, therefore, important in understanding referral following TBI. The policy context exists at the macro-level of health service delivery and is described as the dominant values and interests underpinning service provision and the allocation of resources. Social problems theory suggests that claims-makers articulate their claims consistent with broader social and cultural themes (Best, 1987). As a result, claims will reflect what evidence is valued, the relative importance given to different values and what passes as appropriate standards of policy (Best, 1987). In
2207
this sense, the policy context is understood to be absorbed into the activities of practitioners and to continually interact with processes of decision-making. Apparent now in health care is the ‘‘value for money’’ emphasis in service delivery encouraging greater efficiency in service delivery (Batavia, 1993). Variations in care may also be explained by an increasing focus on those who are easy to treat and thus are likely to have cost efficient outcomes. How current themes of efficiency and cost containment shape post-acute care referral, specifically referral to rehabilitation may be understood through the application of this model.
Application of the model and considerations for future research The model proposed in this paper, although developed in response to TBI, has potential to contribute to a better understanding of the allocation of care in a wide range of settings. Firstly, the model addresses the need to move beyond clinical and non-clinical characteristics of the individual in explaining decisions about the allocation of care, incorporating the contexts of care. Secondly, the model highlights the central role health professionals occupy in decisions about care, both in interpreting and negotiating characteristics of the individuals and mediating the contingencies associated with the contexts of care. As a result, the model acknowledges that interpretative processes are fundamentally shaped by these contexts. Thirdly, the model combines different perspectives of post-acute care referral and harnesses the strengths of approaches investigating referral on the basis of objective facts, and those building upon this understanding by developing knowledge about the complexity of the process of referral. The utility of the model to future research on decisions about care lies in its flexibility and its capacity to be applied to other organisational settings. While there has been an attempt in this paper to incorporate into the model a number of factors previously found to be important in explaining referral following TBI, clearly, the model also provides for a less prescribed scrutiny of the referral process. It is likely that with further research other factors, related to the individual or contexts of care, could be included in this model. The value of the model is that it allows for the main components to be further defined and extended. Although not included in this paper, operationalisation of the concepts is a further consideration in the application of the model. The model also has potential to guide the investigation of decision-making processes involving the allocation of care for other patient groups in various other health care organisations. While it is acknowledged that
2208
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
the model will not necessarily apply perfectly to all cases and organisational contexts, it does provide guidelines for assisting professionals to more transparently acknowledge the decision-making processes they use and to question some practices in relation to the allocation of care. Application of the model to future research must necessarily acknowledge the methodological implications that follow from incorporating characteristics of the individual with TBI, health professionals and their interpretative processes and factors related to the contexts of care, in an explanation of referral decisions. Research based on a model that incorporates these different concepts necessarily involves different methods of analysis, specifically methods that capture the breadth of the profile of referral and the factors influencing referral, and the complexity and depth of the processes of referral. There is always some risk of potential oversimplification in developing models of this nature to understand complex processes. The allocation of care is complex and variable. The strength of the model is that it does provide opportunity to develop a complex analysis based on a broad range of patient factors, contextual factors and the processes of decision-making and negotiation. With health professionals operating in an increasingly complex arena, Pope and Mays (1995) have argued for innovative approaches to research and the complementarity of different methods, including the direct investigation of clinical decision-making to enable a focus on the individual, health professional and practice setting, as the decisions occur. Such approaches will provide opportunity to document what happens to people and to critically evaluate why it happens, and have the potential to contribute to knowledge regarding inequities in access to care.
Conclusion Human service organisations routinely deal with, and constitute persons and events as problems (Holstein & Miller, 1993). Critical scrutiny of referral following TBI and the factors influencing referral is particularly pertinent given that increasing rates of survival following TBI create greater demand for rehabilitation resources. It is also particularly timely given the growing emphasis on cost containment in health care service delivery. In this paper, a model has been proposed to investigate both the profile and process of post-acute care referral following TBI, as a basis for extending the knowledge about the pattern of access to rehabilitation and the factors that contribute to variations in access. The model addresses the lack of attention in previous research to understanding referral decisions as a complex and dynamic phenomenon and the lack of
acknowledgement of the context in which decisions are made. The distinct contribution of the model is that it provides a framework that can be used to examine the pattern of referral and the practices of health professionals within the contexts of care. In particular, the model posits that a more comprehensive explanation of decision-making can be obtained by foregrounding the interpretative processes of health professionals. Thus, the model can be used as a basis for identifying and improving practices of referral not only in the area of TBI, but also other areas of health care service delivery.
References Banja, J. (1999). Patient advocacy at risk: Ethical, legal and political dimensions of adverse reimbursement practices in brain injury rehabilitation in the US. Brain Injury, 13, 745– 758. Barton, L. (1996). Sociology and disability: Some emerging issues. In L. Barton (Ed.), Disability and society: Emerging issues and insights (pp. 3–17). London: Longman. Batavia, A. I. (1993). Health care reform and people with disabilities. Health Affairs, 12(1), 40–57. Ben-Tovin, D., & Elzinger, R. (1994). Casemix: The clinician’s perspective. Australian Casemix Bulletin, 6, 11–13. Best, J. (1987). Rhetoric in claims-making: Constructing the missing children problem. Social Problems, 34, 101–121. Best, J. (1993). But seriously folks: The limitations of the strict constructionist interpretation of social problems. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 129–147). New York: Aldine De Gruyter. Best, J. (1995). Typification and social problems construction. In J. Best (Ed.), Images of issues: Typifying contemporary social problems (pp. 3–10). New York: Aldine De Gruyter. Bonita, R., Anderson, A., & North, J. (1987). The pattern of management after stroke. Age and Ageing, 16, 29–34. Caplan, A.L., Callahan, D., Haas, J., 1987. Ethical and policy issues in rehabilitation medicine. Hastings Centre Report, August, 1–20. Cavestri, R., Buontempi, L., Arreghini, M., LaViola, F., Mazza, P., Tognoni, G., Roncaglioni, C., & Longhini, E. (1997). Access to rehabilitation facilities in an unselected hospital population affected by acute stroke. Italian Journal of Neourological Sciences, 18, 9–16. Clark, J. A., Potter, D. A., & McKinlay, J. B. (1991). Bringing social structure back into clinical decision making. Social Science & Medicine, 32(8), 853–866. Cope, D. N. (1995). The effectiveness of traumatic brain injury rehabilitation: A review. Brain Injury, 9(7), 649–670. DiScala, C., Osberg, J., Gans, B., Chin, L., & Grant, C. (1991). Children with traumatic head injury: Morbidity and postacute treatment. Archives of Physical Medicine and Rehabilitation, 72, 662–668. DiScala, C., Osberg, J., & Savage, R. (1997). Children hospitalized for traumatic brain injury: Transition to postacute care. Journal of Head Trauma Rehabilitation, 12(2), 1–10.
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210 Ducket, S. (1995). Best practice in the health sector. Journal of Quality in Clinical Practice, 15(3), 133–137. Foster, M. (2001). A window of opportunity: Referral from acute care to rehabilitation following traumatic brain injury. Doctoral dissertation, Department of Social Work and Social Policy: The University of Queensland. Foster, M., Fleming, J., Tilse, C., & Rosenman, L. (2000). Referral to post-acute care following traumatic brain injury (TBI) in the Australian context. Brain Injury, 14(12), 1035–1045. Giles, G. (1994). The status of brain injury rehabilitation. American Journal of Occupational Therapy, 48(3), 199–205. Greenwood, R. J., & McMillan, T. M. (1993). Models of rehabilitation programmes for the brain-injured adult. 1: Current provision, efficacy and good practice. Clinical Rehabilitation, 7, 248–255. Griffin, D. (1993). Short bed stays: Their effect on occupational therapy services in teaching hospitals. Archives of Physical Medicine and Rehabilitation, 74, 1087–1090. Grimmer, K., & Bowman, P. (1996). A survey of general practitioners: Implications for the hospital/community interface. Journal of Quality in Clinical Practice, 16, 4–14. Griffiths, L., & Hughes, D. (1993). Typification in a neurorehabilitation centre: Scheff revisited? Sociological Review, 41, 415–445. Griffiths, L., & Hughes, D. (1994). Innocent parties and disheartening experiences: Natural rhetorics in neurorehabilitation admissions conferences. Qualitative Health Research, 4(4), 385–410. Haas, J. F. (1988). Admission to rehabilitation centres: Selection of patients. Archives Physical Medicine and Rehabilitation, 69, 329–332. Hall, K., & Cope, D. N. (1995). The benefit of rehabilitation in traumatic brain injury: A literature review. Journal of Head Trauma Rehabilitation, 10(1), 1–13. Harrison, S. (1995). A policy agenda for health care rationing. British Medical Bulletin, 51(4), 885–899. Holstein, J., & Miller, G. (1993). Social constructionism and social problems work. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 151–172). New York: Aldine De Gruyter. High Jr., W. M., Boake, C., & Lehmkuhl, L. (1995). Critical analysis of studies evaluating the effectiveness of rehabilitation after traumatic brain injury. Journal of Head Trauma Rehabilitation, 10(1), 14–26. Hughes, D., & Griffiths, L. (1997). Ruling in and ruling out: Two approaches to the micro-rationing of health care. Social Science & Medicine, 44(5), 589–599. Hunter, D. J. (1995). Rationing health care: The political perspective. British Medical Bulletin, 51(4), 876–884. Ibarra, P., & Kitsuse, J. (1993). Vernacular constituents of moral discourse: An interactionist proposal for the study of social problems. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 25–58). New York: Aldine De Gruyter. Jamrozik, A., & Nocella, L. (1998). The sociology of social problems: theoretical perspectives and methods of intervention. Cambridge, Melbourne: Cambridge University Press. Mackay, L. E., Bernstein, B. A., Chapman, P. E., Morgan, A. S., & Milazzo, L. S. (1992). Early intervention in severe
2209
head injury: Long-term benefits of a formalized program. Archives Physical Medicine and Rehabilitation, 73, 635–641. Manning, N. (1985). Constructing social problems. In N. Manning (Ed.), Social problems and welfare ideology (pp. 1– 28). Aldershot: Gower Publishing Company. Marks, D. (1997). Models of disability. Disability and Rehabilitation, 19(3), 85–91. Mechanic, D. (1989). Painful choices: research and essays on health care. New Brunswick: Transaction Publishers. Mechanic, D. (1992). Professional judgment and the rationing of medical care. University of Pennsylvania Law Review, 140(5), 1713–1754. Melvin, J. L. (1988). Trends in delivery and funding of postacute care. Archives Physical Medicine and Rehabilitation, 69, 163–166. Miller, G., & Holstein, J. (1993). Reconsidering social constructionism. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 5–23). New York: Aldine De Gruyter. Munford, R., & Sullivan, M. (1997). Social theories of disability: the insurrection of subjugated knowledge. In P. O’Brien, & R. Murray (Eds.), Human services: Towards partnerships and support (pp. 17–33). Palmerston North: The Dunmore Press. Osberg, J., DiScala, C., & Gans, B. (1990). Utilization of inpatient rehabilitation services among traumatically injured children discharged from pediatric trauma centres. American Journal of Physical Medicine and Rehabilitation, 69(2), 67–72. Pain, K., Dunn, M., Anderson, G., Darrah, J., & Kratochvil, M. (1998). Quality of life: What does it mean in rehabilitation? The Journal of Rehabilitation, 64(2), 5–19. Patford, J. (1999). What’s happening in health: Progress and prospects for social work. Australian Social Work, 52(1), 3–7. Pope, C., & Mays, N. (1995). Researching the parts other methods cannot reach: An introduction to qualitative methods in health and health services research. British Medical Journal, 310(6996), 42–46. Reitan, T. (1998). Theories of interorganizational relations in the human services. Social Services Review, 72, 285–311. Rubington, E., & Weinberg, M. (Eds.), (1995). The study of social problems: Seven perspectives (5th ed.). New York: Oxford University Press. Sax, S. (1990). Health care choices and the public purse. Sydney: Allen & Unwin. Schneider (1985). Social problems theory: The constructionist view. Annual Review of Sociology, 11, 209–229. Spector, M., & &Kitsuse, J. (1987). Constructing social problems. New York: Aldine De Gruyter. Susman, J. (1994). Disability, stigma and deviance. Social Science & Medicine, 38(1), 15–22. Unsworth, C., Osberg, J., & Graham, A. (1997). Admitting paediatric trauma patients to rehabilitation following acute care: Decision making practices in the USA and Australia. Pediatric Rehabilitation, 1(4), 207–218. Unsworth, C., Thomas, S., & Greenwood, K. (1995). Rehabilitation team decisions on discharge housing for stroke patients. Archives of Physical Medicine and Rehabilitation, 76, 331–340.
2210
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
Williams, S., & Shah, S. (1995). The introduction of casemix across Australia: Implementation issues for occupational therapists. Australian Occupational Therapy Journal, 42, 143–150. Wrigley, J. M., Yoels, W. C., Webb, C. R., & Fine, P. R. (1994). Social and physical factors in the referral of people with
traumatic brain injuries to rehabilitation. Archives Physical Medicine and Rehabilitation, 75, 149–155. Ylvisaker, M., & Feeney, T. (1995). Traumatic brain injury in adolescence: Assessment and reintegration. Seminars in Speech and Language, 16(1), 32–45.
Referral to rehabilitation following traumatic brain injury: a model for understanding inequities in access Michele Fostera,*, Cheryl Tilseb a
Centre of National Research on Disability and Rehabilitation Medicine (CONROD), The University of Queensland, Herston, Qld 4006, Australia b School of Social Work and Social Policy, The University of Queensland, Brisbane 4072, Australia
Abstract Identifying inequities in access to health care requires critical scrutiny of the patterns and processes of care decisions. This paper describes a conceptual model, derived from social problems theory, which is proposed as a useful framework for explaining patterns of post-acute care referral and in particular, individual variations in referral to rehabilitation after traumatic brain injury (TBI). The model is based on three main components: (1) characteristics of the individual with TBI, (2) activities of health care professionals and the processes of referral, and (3) the contexts of care. The central argument is that access to rehabilitation following TBI is a dynamic phenomenon concerning the interpretations and negotiations of health care professionals, which in turn are shaped by the organisational and broader health care contexts. The model developed in this paper provides opportunity to develop a complex analysis of post-acute care referral based on patient factors, contextual factors and decision-making processes. It is anticipated that this framework will have utility in other areas examining and understanding patterns of access to health care. r 2002 Elsevier Science Ltd. All rights reserved. Keywords: Brain injury; Social problems theory; Rehabilitation
Introduction The allocation of care is based on the belief that health professionals make ‘scientifically valid judgements as to what constitutes need, what treatment modalities are most likely to be effective, and which cases deserve priority’ (Mechanic, 1989, p. 23). Indeed, the central role of health professionals is fundamental to reassuring the public that decisions about care are based on medical facts alone, rather than upon economic considerations (Harrison, 1995). In reality, professional autonomy allows health professionals to classify some demands as needs whilst rejecting others and to alter this classification depending upon available resources (Harrison, 1995). While decisions rely heavily upon processes *Corresponding author. Tel.: +61-7-3346-4794; fax: +61-73346-4603. E-mail address: [email protected] (M. Foster).
of diagnosis and interpretation of symptoms, they commonly also involve selecting those who will benefit most from treatment (Ducket, 1995; Sax, 1990), and defining ‘deservedness for treatment’ (Hughes & Griffiths, 1997). This is most apparent in the area of disability, where medical values, interpretations and labelling are argued to be core aspects of defining disability and determining the appropriate treatment or care (Barton, 1996; Marks, 1997; Munford & Sullivan, 1997). While there is a preference among health professionals to understand or measure disability in terms of fixed functional capacities, labels and definitions of problems are contested and also changeable (Marks, 1997). The contested nature of disability is fuelled by the uncertainty that often surrounds diagnosis and prognosis of disabling conditions. With health professionals promoted as not only the experts to assess and treat individuals, but also as ‘agents of rationing’ to limit access to resources (Harrison, 1995; Hunter, 1995),
0277-9536/03/$ - see front matter r 2002 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 0 2 ) 0 0 2 3 6 - 8
2202
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
issues such as potential and deservedness become more salient when resources are stretched (Griffiths & Hughes, 1994). While traumatic brain injury (TBI) is considered to represent an etiology rather than a disability, it has long been identified as a disability category in the rehabilitation field (Ylvisaker & Feeney, 1995). Decisions about the allocation of care are also inherently linked to interpretations and definitions of impairment and disablement. For the majority of people with TBI, early referral to rehabilitation is a critical part of facilitating recovery and improving outcome (Hall & Cope, 1995; Giles, 1994; High, Boake, & Lehmkuhl, 1995). Yet, it is acknowledged that only a small proportion of people who could benefit from rehabilitation gain access (Cope, 1995; Giles, 1994). Variations in access cannot be adequately explained by clinical factors related to the individual, with non-clinical factors, sometimes unrelated to the individual, also contributing to variations (Wrigley, Yoels, Webb, & Fine, 1994). Place of treatment and the distribution of rehabilitation services often influence variations (Osberg, DiScala, & Gans, 1990). More importantly, a range of opinions and interpretations of potential and outcome result in highly selective processes that determine where people go after injury (Caplan, Callahan, & Haas, 1987; Haas, 1988; Hughes & Griffiths, 1997). Although rehabilitation can commence during the early acute care stage of treatment, with referrals to rehabilitation professionals and pharmacological intervention initiated to address coma (Mackay, Bernstein, Chapman, Morgan, & Milazzo, 1992), it is commonly considered to be a specialised continuum of post-acute care that follows the acute care phase of medical management (Melvin, 1988). For people with TBI, rehabilitative care is a core category of post-acute care, and represents a specialised type of post-acute care referral, which may be differentiated from other types of care that have a maintenance, monitoring, or supportive rather than rehabilitative focus. The continuum includes services such as acute in-patient rehabilitation, sub-acute rehabilitation and a range of specialised outpatient programs focused on community re-entry, and behavioural, cognitive and vocational rehabilitation. Yet, differential access is common, with some people referred to specialist rehabilitation services at the end of acute care treatment, and others referred to generic health services, including allied health professionals and general medical practitioners, or not referred to any services (Foster, 2001). Unlike acute medical care, decisions about referral to rehabilitation generally involve consideration of more abstract issues such as quality of life, despite there being a lack of consensus regarding its meaning and application in treatment decisions (Pain, Dunn, Anderson, Darrah, & Kratochvil. 1998). Referral decisions are, therefore, inherently complex and need to
be understood as a dynamic phenomenon shaped, not only by characteristics of the individual, but also the interactions and interpretations of health professionals who operate within unique organisational and broader health care contexts. The purpose of this paper is to present a model for explaining the patterns of referral from acute care to rehabilitation following TBI that incorporates characteristics of the individual, the interpretative activities of health professionals and the contexts of care. The model proposed is a useful framework to critically assess referral of people with TBI at the end of acute care treatment, henceforth referred to as post-acute care referral. The rationale is that by developing a better understanding of post-acute care referral decisions and the factors that influence these decisions, inequities in access to rehabilitation may be identified and addressed more effectively. The paper reviews previous approaches to understanding referral decisions following brain injury and presents a reconceptualisation of post-acute care referral, based on social problems theory. This theory offers a theoretical basis for understanding the central role of practitioners in referral decisions, the influence of context and the dynamic nature of referral decisions. The model is applicable, therefore, for monitoring the allocation of care for other populations.
Previous approaches to understanding patterns of referral following TBI Only a small number of studies have investigated referral following TBI (DiScala, Osberg, & Savage, 1997; DiScala, Osberg, Gans, Chin, & Grant, 1991; Hughes & Griffiths, 1997; Osberg et al., 1990; Unsworth, Osberg, & Graham, 1997; Wrigley et al., 1994). A review of these studies, and consideration of studies about referral following other types of brain injury such as stroke (Cavestri et al., 1997; Bonita, Anderson, & North, 1987; Unsworth, Thomas, & Greenwood, 1995) revealed several key themes about studies of referral. There has been a tendency to rely primarily on survey approaches and quantitative data types, using the person with disability or the health professional as the unit of analysis. Studies on referral and TBI have tended to focus more on explaining referral as an outcome of the characteristics of the person with TBI, and less on factors unrelated to the individual such as those associated with the context of care. The central role practitioners occupy, not only in interpreting the characteristics of the individual, but also in assimilating and mediating the unique contingencies within the decision-making context, has received limited attention. This paper argues that as a result, most studies have over-simplified the process of making decisions about care and the factors influencing these decisions.
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
Previous research on referral to rehabilitation following brain injury using retrospective survey approaches (DiScala et al., 1997, 1991; Osberg et al., 1990; Wrigley et al., 1994) and hypothetical case studies (Unsworth et al., 1995) have established that clinical and nonclinical factors related to the person with TBI may contribute to variations in decisions about referral to rehabilitation. Clinical factors include severity of injury and degree and type of impairment, while non-clinical factors may include a range of social and demographic factors such as age, place of residence, ethnicity, financial status and availability of a carer (Caplan et al., 1987; DiScala et al., 1991; Haas, 1988; Osberg et al., 1990; Unsworth et al., 1997; Wrigley et al., 1994). It is also suggested that factors such as mobility, ability to perform daily tasks and availability of social supports, and degree of disability and age, may be more important than other factors in determining referral following stroke (Cavestri et al., 1997; Unsworth et al., 1995). Yet, the extent of influence of non-clinical factors on decisions may not be fully appreciated in survey or retrospective studies, since judgements based on clinical factors are often intermingled with normative assessments of the individual’s character or social identity (Mechanic, 1992). Some of these studies have also speculated that factors unrelated to the person with TBI, contribute to variations in referral. The involvement of a rehabilitation physician and the place of treatment, for example, have been found to facilitate referral to rehabilitation following TBI (Foster, Fleming, Tilse, & Rosenman, 2000; Wrigley et al., 1994). Overall, the strength of these studies is the valuable information provided concerning the patterns and predictors of referral, which is pivotal in monitoring trends in access to care. The weakness, however, lies in treating factors influencing referral as ‘objective facts’, rather than adopting close scrutiny of what is done with these facts in actual decision-making processes. Without a more in-depth approach, it is difficult to understand what interpretations are drawn about the individual, and how these might be altered depending upon unique features of the organisation and other contextual factors. Previous studies examining the role and influence of health professionals on referral decisions following brain injury have drawn on social judgement theory (Unsworth et al., 1995) and discourse analysis (Hughes & Griffiths, 1997). These studies have suggested that professionals select and prioritise characteristics of the individual in making decisions (Unsworth et al., 1995). Hughes and Griffiths (1997) argue that health professionals routinely engage in interpretative activities, consider clinical and non-clinical factors collectively, and draw social and normative conclusions about a person’s identity and deservedness. In general, the conclusion is that the type of information used in
2203
decision-making changes depending upon the situation and that referral decisions emerge, not so much from the application of universal criteria, but from a process of interpretation and negotiation. While these studies attempt to capture the dynamic nature of referral decisions, on the whole, they do not explain adequately how orientations are influenced by the contingencies of the decision-making context. In making referral decisions, it is suggested that professionals are engaged in mediating ‘diffuse contextual and organisational considerations’ (Griffiths & Hughes, 1993, p. 435), which has more to do with the pressures impinging on them rather than considerations of the individuals, such as those with TBI. The indication from previous studies on referral following TBI is that the resource context plays a particularly important role in referral decisions. Availability of, and proximity to rehabilitation services, for example, has been shown to contribute to variations in referral (DiScala et al., 1997; Wrigley et al., 1994). At a broader level, the activities of health professionals are currently being shaped by sweeping changes in health service delivery (Ben-Tovin & Elzinger, 1994; Griffin, 1993; Hunter, 1995; Patford, 1999; Williams & Shah, 1995), with significant restrictions being realised in the area of professional advocacy (Banja, 1999). These issues make it imperative to incorporate the influence of the trends and dominant values that underpin service delivery on referral decisions. For a more complex understanding of the allocation of care, innovative models that incorporate, but also move beyond a focus on factors related to the individual, to incorporate factors related to the health professionals and the context of care are needed. Such a model would permit investigation of referral based on a number of ‘objective facts’ as a way of monitoring referral trends, but also allow opportunity to build on this understanding by providing a framework to explore the process of referral as it occurs within the contexts of care.
A theoretical framework for reconceptualising the understanding of post-acute care referral following TBI Reconceptualising the understanding of post-acute care referral following TBI, and the factors influencing referral, incorporates three main components: characteristics of the individual with TBI, the activities of health professionals in the process of referral, and the context of care in which referral decisions are made. Central to the approach are the following propositions. Firstly, while clinical and non-clinical characteristics of the person with TBI are important, decisions about care are shaped by the contexts of care, namely the organisational and broader health care contexts. Secondly, health professionals are central in
2204
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
decision-making and typically engage in interpretative processes as part of making decisions about care. Health professionals also continually assimilate and mediate characteristics of the contexts of care, and thus their interpretative activities are fundamentally shaped by these contexts. The third point is that a better picture of referral and a more thorough understanding of factors influencing referral decisions is obtained by combining the ‘objective view’ used primarily in retrospective or survey approaches, with a process view, used to gain an in-depth understanding of the interpretative activities of professionals. Integrating these components into a model of referral following TBI is inherently complex and, therefore, requires an appropriate theoretical framework. Social problems theory provides a potential framework to capture the complexity and dynamic nature of referral following TBI. In social problems theory a social problem ‘‘is a social phenomenon or social condition that is perceived to potentially or directly threaten the social order’’ (Jamrozik & Nocella, 1998, p. 18). With disabling conditions viewed historically as a burden on society, the threat to the social order is apparent. Furthermore, issues of disability and disabled people are, according to Munford and Sullivan (1997, pp.1920), ‘both socially constructed and socially created’, largely as a result of the medical paradigm and the practices that result from that ideology. The distinct contribution of social problems theory to the study of referral following TBI relates to its capacity to assist in understanding the central role of health professionals as decision-makers, interpreting individual characteristics and mediating the context of care. Furthermore, social problems theory offers a way to define, understand and study social problems, which is decidedly different from other perspectives (Schneider, 1985). The early theories of social problems suggested that the essence of social problems could be found in objective social conditions and thus targeting these conditions was the way to alleviate the problem (Best, 1995; Jamrozik & Nocella, 1998; Manning, 1985; Rubington & Weinberg, 1995). Such ‘objectivist’ approaches have been criticised, however, as ‘truncated perspectives’ with the responses arising from such perspectives typically focused on managing those with the problem rather than solving the problem (Jamrozik & Nocella, 1998). The constructionist theoretical framework, in contrast, moved on from earlier approaches to incorporate the concept of ‘claims-making’, understood as a contested process that ultimately results in the definition of the problem and the allocation of resources (Best, 1993; Ibarra & Kitsuse, 1993; Spector & Kitsuse, 1987). This development led to a focus on the ‘‘myriad of everyday interactional matters that constitute social problems on a smaller scale’’ (Holstein & Miller, 1993, p. 152). Within this perspective an understanding of
definitions and responses to problems is obtained by focusing on the activities of the ‘claims-makers’ (in this case the health practitioners) and what is interpretively done with selected information to assign people to categories (Best, 1987, 1993, 1995). Based on the work of Best (1987), there are three principal categories that assist with the critical examination of the processes of ‘claims-making’. The principal categories include: (1) Statements or basic facts that serve as the foundation for discussion and interpretation known as ‘grounds’. (2) Statements that justify specific conclusions from the facts known as ‘warrants’. (3) Statements of action to address the defined problem known as ‘conclusions’. The basic facts or grounds include definitions, examples or numeric estimates (Best, 1987). Definitions set the boundaries of the problem, while examples and numeric estimates provide more detail about the nature and scope of the problem. In relation to TBI, grounds represent the clinical and non-clinical characteristics of the individual. Warrants, in contrast to grounds or the basic facts, are usually more implicit and value-laden (Best, 1987). Warrants are represented in Griffiths and Hughes (1994) work, as the moral or cultural statements, such as notions of deservedness, used to persuade others about the nature of the disability and the appropriate referral solution. Like warrants, these statements act as justifications for action. A decision not to refer to rehabilitation likewise may include accounts of injury severity (grounds), yet framed in terms of poor potential for independence (warrant). Warrants also incorporate the interactive aspect of ‘claims-making’, whereby interpretations are negotiated with other actors. The constructionist view, therefore, represents a dynamic view of social problems, one that focuses ‘‘not on social problems per se but on the processes through which social problems are defined and on social actors who define them’’ (Jamrozik & Nocella, 1998, p. 2). Yet, social problems theorists highlighting the importance of ‘claims-making’ have since argued that interpretative activities are ongoing, locally managed and sensitive to practical circumstances and contingencies (Holstein & Miller, 1993, p. 164). The suggestion that health professionals engage in ongoing interpretative activities highlights the limitations of studies that adopt ‘objectivist’ positions alone. The acknowledgement of context indicates, furthermore, that health professionals are not immune to pressures inherent in the decision-making context. Indeed, the contextual view of social problems suggests that negotiation processes need to be understood within the unique social and political contexts in which they are embedded
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
since ‘claims-makers’ articulate their claims in ways that correspond with these contexts (Best, 1993; Miller & Holstein, 1993). The contexts of care, therefore, effectively operate as a ‘frame of reference’, and definitions of problems and the justifications for a particular course of action will often reflect the unique contingencies of these broader contexts (Best, 1987). Health practitioners, for example, may be influenced by different values, current standards or consensus about appropriate referral to rehabilitation following TBI. Indeed, justifications for a referral decision may be based on factors other than those related directly to the individual with TBI. It has also been suggested that the place of treatment influences the process of referral, and that variations in practice may be attributable to trends and expectations associated with service delivery. The main components of the model proposed for reconceptualising referral to rehabilitation following TBI, based on social problems theory, are shown in Fig. 1.
Health care environment ‘frames of reference’
Organisational context ‘boundaries of practice’
Claims-making: Characteristics of the individual
Characteristics of post-acute care
Grounds Warrants Conclusions
Fig. 1. Major components of a model of referral following TBI based on social problems theory.
A conceptual model for understanding post-acute care referral following TBI The conceptual model developed brings together the key themes and concepts from the literature on TBI and from social problems theory, important in explaining post-acute care referral following TBI and factors influencing referral. The model, shown in Fig. 2, attempts to integrate different perspectives of post-acute care referral following TBI, such that a more complex understanding of the factors influencing referral to rehabilitation is developed from investigating both the profile and the process of referral. Firstly, the conceptual model posits a direct relationship between post-acute care referral and the individual with TBI. From this perspective, the profile of post-acute care referral can be described, and explained primarily on the basis of ‘objective facts’. Secondly, the model incorporates a direct relationship between postacute care referral and the interpretative processes of health professionals. From this perspective there is an indirect relationship between the individual with TBI and post-acute care referral since, based on social problems theory, health professionals occupy a central role as the interpreters of characteristics. This perspective also proposes an indirect relationship between postacute care referral and the contexts of care, in this case, the organisation and broader health care contexts. It is suggested that health professionals, whilst engaged in processes of interpreting characteristics of the individual, are influenced by these contexts. The relationship between health professionals and post-acute care referral is assumed to be a dynamic rather than a linear or rational process. Combining a focus on the profile of referral and the breadth of factors influencing this profile, with an in-depth focus on the process of referral is a particularly important aspect of the conceptual
Health care environment • •
Resource context Policy context
Contexts of care Organisational context • Place of treatment • Pattern of involvement of rehabilitation & health professionals Health professionals & Process of referral Individual with TBI Clinical & non-clinical characteristics
2205
Post-acute care referral Processes of interpreting the characteristics of the individual, and the interaction with the contexts of care
• Discharge destination • Type of post-acute care • Type of rehabilitation
Fig. 2. A conceptual model for understanding post-acute care referral following TBI.
2206
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
model. This also has methodological implications in applying the model in future research. Post-acute care referral In the conceptual model, post-acute care referral is conceptualised as a distinct category of care intended to address ongoing care needs of the individual after the conclusion of acute care treatment. As was suggested earlier, some people may be referred to specialist rehabilitation care, while others may be referred to more general types of post-acute care. The position taken in this paper is that to understand equity of access to rehabilitation following TBI, it is necessary to identify three characteristics of post-acute care referral at the end of acute care: the discharge destinations of people with TBI, the type of post-acute care referral and the type of rehabilitation referral. Distinguishing discharge destination from the type of post-acute care referral is an important basis for identifying inequities in access, since, as argued in this paper, differential patterns of care are common. Types of post-acute care referral may include services provided by general medical practitioners and allied health professionals, community nurses, domiciliary services and in-patient rehabilitation programs, and is a category of care recommended as part of planning discharge from the acute care setting to another location. It is, therefore, distinct from the location the person is transferred to after acute care. Referral to rehabilitation is conceptualised as referral at the end of acute care treatment to a specialist system of care directed primarily toward minimising the disabling impact of TBI. This suggests rehabilitation is a process of continued care that involves professionals assisting individuals to overcome disability and to achieve functional and meaningful interaction with their environment (Greenwood & McMillan, 1993). Different types of rehabilitation may include in-patient rehabilitation and specialist programs and services provided in a range of hospital, organisational and home settings. Characteristics of the person with TBI Within the medical and rehabilitation paradigms, clinical characteristics have traditionally been important indicators of independence, overall potential and the capacity to regain function and maintain productive employment (Susman, 1994). Based on the model, from the profile perspective clinical characteristics relevant to referral following TBI have been defined as the initial severity of injury and the degree of impairment associated with TBI. Non-clinical characteristics reflect the social identity and value of the individual within society (Griffiths & Hughes, 1994). Social and demographic characteristics of the individual are often taken
into account as risk factors when determining care (Clark, Potter, & McKinlay, 1991). The model also acknowledges, however, that while referral decisions may be understood on the basis of objective individual factors, health professionals ultimately select and interpret these factors. Therefore, in combining the process perspective, the model provides the framework for investigating what patient information is selected, how problems of TBI are interpreted and how the referral decision is formulated. Interpretative activities of health professionals in the process of referral The interpretative processes of health professionals are conceptualised as the processes of selecting information (grounds), interpreting information (warrants) and determining referral (conclusions). Social problems theory posits that claims-makers commonly select and interpret specific aspects of the condition overlooking other reportable features, these activities creating justifications for action (Best, 1995). However, as was argued earlier in this paper, in their central role as ‘gatekeepers’ of resources, health professionals are often thought to alter their interpretations of problems depending upon the availability of resources or other organisational and political pressures to ration resources. These factors represent the unique contexts of care within which decisions are made, and thus, they are often reflected in the definitions of problems and the justifications for action (Best, 1987). By focusing on the interpretative processes of professionals, therefore, the model also allows for closer scrutiny of the organisational and health care contexts within which professionals negotiate referral, the particular options and constraints these contexts engender, how these interact with the interpretative processes of practitioners, and the pattern of referral they produce. A further aspect of the interpretative role of health professionals is consideration of who is involved. Best (1987, p. 116) has argued that consideration of ‘‘the ‘claims-makers’ is a fundamental aspect of the sociology of social problems since it effectively impacts on rhetorical work’’, influencing the orientation toward problems and the type of solutions considered. This is discussed further below as a dimension of the organisational context. Organisational context The organisational context in this model is defined as the acute care hospitals that are responsible for the initial medical treatment of people with TBI, and where post-acute care referral is determined. The unique features of treatment settings are likely to influence clinical decision-making (Haas, 1988) and these shape
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
clinical orientations and practice (Clark et al., 1991). Acute care facilities with an on-site rehabilitation unit, for example, have been found to facilitate referral to rehabilitation (Foster et al., 2000; Wrigley et al., 1994). Other unique features of the organisational context may include the availability and involvement of rehabilitation professionals, which has also been found to be a determinant of referral to rehabilitation (Wrigley et al., 1994). The involvement of health professionals and their influence on referral decisions has not, however, been thoroughly investigated. Based on social problems theory, ‘claims-makers’ commonly negotiate different understandings of the problem in order to persuade others toward a desired solution (Best, 1987). A multidisciplinary team, therefore, will potentially negotiate multiple interpretations of the problem. This suggests the model needs to allow not only for a description of the involvement of different health professionals, but also an in-depth understanding of how the professionals involved negotiate definitions of the problem and formulate the solutions. Health care context In the model, the health care context is conceptualised as the external resource and policy contexts within which professionals engage in decision-making. The resource context is understood to exist at the service provision level. It incorporates two dimensions, (1) the availability of post-acute care and rehabilitation services, and (2) the relationships between health professionals and the resource context, that is, post-acute care and rehabilitation services. Health professionals are dependent upon resources provided by other institutions or professionals that make up the service environment to carry out their tasks successfully (Reitan, 1998). It has been speculated that referral to rehabilitation following TBI, for example, is linked to the broader distribution and accessibility of post-acute care and specialist rehabilitation services (DiScala et al., 1997). Reliance on familiar routines, and familiar relationships between decision-makers are also key themes identified in previous research on referral to outpatient services (Grimmer & Bowman, 1996). The nature and quality of resources, and the nature and extent of relationships developed among service providers are, therefore, important in understanding referral following TBI. The policy context exists at the macro-level of health service delivery and is described as the dominant values and interests underpinning service provision and the allocation of resources. Social problems theory suggests that claims-makers articulate their claims consistent with broader social and cultural themes (Best, 1987). As a result, claims will reflect what evidence is valued, the relative importance given to different values and what passes as appropriate standards of policy (Best, 1987). In
2207
this sense, the policy context is understood to be absorbed into the activities of practitioners and to continually interact with processes of decision-making. Apparent now in health care is the ‘‘value for money’’ emphasis in service delivery encouraging greater efficiency in service delivery (Batavia, 1993). Variations in care may also be explained by an increasing focus on those who are easy to treat and thus are likely to have cost efficient outcomes. How current themes of efficiency and cost containment shape post-acute care referral, specifically referral to rehabilitation may be understood through the application of this model.
Application of the model and considerations for future research The model proposed in this paper, although developed in response to TBI, has potential to contribute to a better understanding of the allocation of care in a wide range of settings. Firstly, the model addresses the need to move beyond clinical and non-clinical characteristics of the individual in explaining decisions about the allocation of care, incorporating the contexts of care. Secondly, the model highlights the central role health professionals occupy in decisions about care, both in interpreting and negotiating characteristics of the individuals and mediating the contingencies associated with the contexts of care. As a result, the model acknowledges that interpretative processes are fundamentally shaped by these contexts. Thirdly, the model combines different perspectives of post-acute care referral and harnesses the strengths of approaches investigating referral on the basis of objective facts, and those building upon this understanding by developing knowledge about the complexity of the process of referral. The utility of the model to future research on decisions about care lies in its flexibility and its capacity to be applied to other organisational settings. While there has been an attempt in this paper to incorporate into the model a number of factors previously found to be important in explaining referral following TBI, clearly, the model also provides for a less prescribed scrutiny of the referral process. It is likely that with further research other factors, related to the individual or contexts of care, could be included in this model. The value of the model is that it allows for the main components to be further defined and extended. Although not included in this paper, operationalisation of the concepts is a further consideration in the application of the model. The model also has potential to guide the investigation of decision-making processes involving the allocation of care for other patient groups in various other health care organisations. While it is acknowledged that
2208
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
the model will not necessarily apply perfectly to all cases and organisational contexts, it does provide guidelines for assisting professionals to more transparently acknowledge the decision-making processes they use and to question some practices in relation to the allocation of care. Application of the model to future research must necessarily acknowledge the methodological implications that follow from incorporating characteristics of the individual with TBI, health professionals and their interpretative processes and factors related to the contexts of care, in an explanation of referral decisions. Research based on a model that incorporates these different concepts necessarily involves different methods of analysis, specifically methods that capture the breadth of the profile of referral and the factors influencing referral, and the complexity and depth of the processes of referral. There is always some risk of potential oversimplification in developing models of this nature to understand complex processes. The allocation of care is complex and variable. The strength of the model is that it does provide opportunity to develop a complex analysis based on a broad range of patient factors, contextual factors and the processes of decision-making and negotiation. With health professionals operating in an increasingly complex arena, Pope and Mays (1995) have argued for innovative approaches to research and the complementarity of different methods, including the direct investigation of clinical decision-making to enable a focus on the individual, health professional and practice setting, as the decisions occur. Such approaches will provide opportunity to document what happens to people and to critically evaluate why it happens, and have the potential to contribute to knowledge regarding inequities in access to care.
Conclusion Human service organisations routinely deal with, and constitute persons and events as problems (Holstein & Miller, 1993). Critical scrutiny of referral following TBI and the factors influencing referral is particularly pertinent given that increasing rates of survival following TBI create greater demand for rehabilitation resources. It is also particularly timely given the growing emphasis on cost containment in health care service delivery. In this paper, a model has been proposed to investigate both the profile and process of post-acute care referral following TBI, as a basis for extending the knowledge about the pattern of access to rehabilitation and the factors that contribute to variations in access. The model addresses the lack of attention in previous research to understanding referral decisions as a complex and dynamic phenomenon and the lack of
acknowledgement of the context in which decisions are made. The distinct contribution of the model is that it provides a framework that can be used to examine the pattern of referral and the practices of health professionals within the contexts of care. In particular, the model posits that a more comprehensive explanation of decision-making can be obtained by foregrounding the interpretative processes of health professionals. Thus, the model can be used as a basis for identifying and improving practices of referral not only in the area of TBI, but also other areas of health care service delivery.
References Banja, J. (1999). Patient advocacy at risk: Ethical, legal and political dimensions of adverse reimbursement practices in brain injury rehabilitation in the US. Brain Injury, 13, 745– 758. Barton, L. (1996). Sociology and disability: Some emerging issues. In L. Barton (Ed.), Disability and society: Emerging issues and insights (pp. 3–17). London: Longman. Batavia, A. I. (1993). Health care reform and people with disabilities. Health Affairs, 12(1), 40–57. Ben-Tovin, D., & Elzinger, R. (1994). Casemix: The clinician’s perspective. Australian Casemix Bulletin, 6, 11–13. Best, J. (1987). Rhetoric in claims-making: Constructing the missing children problem. Social Problems, 34, 101–121. Best, J. (1993). But seriously folks: The limitations of the strict constructionist interpretation of social problems. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 129–147). New York: Aldine De Gruyter. Best, J. (1995). Typification and social problems construction. In J. Best (Ed.), Images of issues: Typifying contemporary social problems (pp. 3–10). New York: Aldine De Gruyter. Bonita, R., Anderson, A., & North, J. (1987). The pattern of management after stroke. Age and Ageing, 16, 29–34. Caplan, A.L., Callahan, D., Haas, J., 1987. Ethical and policy issues in rehabilitation medicine. Hastings Centre Report, August, 1–20. Cavestri, R., Buontempi, L., Arreghini, M., LaViola, F., Mazza, P., Tognoni, G., Roncaglioni, C., & Longhini, E. (1997). Access to rehabilitation facilities in an unselected hospital population affected by acute stroke. Italian Journal of Neourological Sciences, 18, 9–16. Clark, J. A., Potter, D. A., & McKinlay, J. B. (1991). Bringing social structure back into clinical decision making. Social Science & Medicine, 32(8), 853–866. Cope, D. N. (1995). The effectiveness of traumatic brain injury rehabilitation: A review. Brain Injury, 9(7), 649–670. DiScala, C., Osberg, J., Gans, B., Chin, L., & Grant, C. (1991). Children with traumatic head injury: Morbidity and postacute treatment. Archives of Physical Medicine and Rehabilitation, 72, 662–668. DiScala, C., Osberg, J., & Savage, R. (1997). Children hospitalized for traumatic brain injury: Transition to postacute care. Journal of Head Trauma Rehabilitation, 12(2), 1–10.
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210 Ducket, S. (1995). Best practice in the health sector. Journal of Quality in Clinical Practice, 15(3), 133–137. Foster, M. (2001). A window of opportunity: Referral from acute care to rehabilitation following traumatic brain injury. Doctoral dissertation, Department of Social Work and Social Policy: The University of Queensland. Foster, M., Fleming, J., Tilse, C., & Rosenman, L. (2000). Referral to post-acute care following traumatic brain injury (TBI) in the Australian context. Brain Injury, 14(12), 1035–1045. Giles, G. (1994). The status of brain injury rehabilitation. American Journal of Occupational Therapy, 48(3), 199–205. Greenwood, R. J., & McMillan, T. M. (1993). Models of rehabilitation programmes for the brain-injured adult. 1: Current provision, efficacy and good practice. Clinical Rehabilitation, 7, 248–255. Griffin, D. (1993). Short bed stays: Their effect on occupational therapy services in teaching hospitals. Archives of Physical Medicine and Rehabilitation, 74, 1087–1090. Grimmer, K., & Bowman, P. (1996). A survey of general practitioners: Implications for the hospital/community interface. Journal of Quality in Clinical Practice, 16, 4–14. Griffiths, L., & Hughes, D. (1993). Typification in a neurorehabilitation centre: Scheff revisited? Sociological Review, 41, 415–445. Griffiths, L., & Hughes, D. (1994). Innocent parties and disheartening experiences: Natural rhetorics in neurorehabilitation admissions conferences. Qualitative Health Research, 4(4), 385–410. Haas, J. F. (1988). Admission to rehabilitation centres: Selection of patients. Archives Physical Medicine and Rehabilitation, 69, 329–332. Hall, K., & Cope, D. N. (1995). The benefit of rehabilitation in traumatic brain injury: A literature review. Journal of Head Trauma Rehabilitation, 10(1), 1–13. Harrison, S. (1995). A policy agenda for health care rationing. British Medical Bulletin, 51(4), 885–899. Holstein, J., & Miller, G. (1993). Social constructionism and social problems work. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 151–172). New York: Aldine De Gruyter. High Jr., W. M., Boake, C., & Lehmkuhl, L. (1995). Critical analysis of studies evaluating the effectiveness of rehabilitation after traumatic brain injury. Journal of Head Trauma Rehabilitation, 10(1), 14–26. Hughes, D., & Griffiths, L. (1997). Ruling in and ruling out: Two approaches to the micro-rationing of health care. Social Science & Medicine, 44(5), 589–599. Hunter, D. J. (1995). Rationing health care: The political perspective. British Medical Bulletin, 51(4), 876–884. Ibarra, P., & Kitsuse, J. (1993). Vernacular constituents of moral discourse: An interactionist proposal for the study of social problems. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 25–58). New York: Aldine De Gruyter. Jamrozik, A., & Nocella, L. (1998). The sociology of social problems: theoretical perspectives and methods of intervention. Cambridge, Melbourne: Cambridge University Press. Mackay, L. E., Bernstein, B. A., Chapman, P. E., Morgan, A. S., & Milazzo, L. S. (1992). Early intervention in severe
2209
head injury: Long-term benefits of a formalized program. Archives Physical Medicine and Rehabilitation, 73, 635–641. Manning, N. (1985). Constructing social problems. In N. Manning (Ed.), Social problems and welfare ideology (pp. 1– 28). Aldershot: Gower Publishing Company. Marks, D. (1997). Models of disability. Disability and Rehabilitation, 19(3), 85–91. Mechanic, D. (1989). Painful choices: research and essays on health care. New Brunswick: Transaction Publishers. Mechanic, D. (1992). Professional judgment and the rationing of medical care. University of Pennsylvania Law Review, 140(5), 1713–1754. Melvin, J. L. (1988). Trends in delivery and funding of postacute care. Archives Physical Medicine and Rehabilitation, 69, 163–166. Miller, G., & Holstein, J. (1993). Reconsidering social constructionism. In J. Holstein, & G. Miller (Eds.), Reconsidering social constructionism: Debates in social problems theory (pp. 5–23). New York: Aldine De Gruyter. Munford, R., & Sullivan, M. (1997). Social theories of disability: the insurrection of subjugated knowledge. In P. O’Brien, & R. Murray (Eds.), Human services: Towards partnerships and support (pp. 17–33). Palmerston North: The Dunmore Press. Osberg, J., DiScala, C., & Gans, B. (1990). Utilization of inpatient rehabilitation services among traumatically injured children discharged from pediatric trauma centres. American Journal of Physical Medicine and Rehabilitation, 69(2), 67–72. Pain, K., Dunn, M., Anderson, G., Darrah, J., & Kratochvil, M. (1998). Quality of life: What does it mean in rehabilitation? The Journal of Rehabilitation, 64(2), 5–19. Patford, J. (1999). What’s happening in health: Progress and prospects for social work. Australian Social Work, 52(1), 3–7. Pope, C., & Mays, N. (1995). Researching the parts other methods cannot reach: An introduction to qualitative methods in health and health services research. British Medical Journal, 310(6996), 42–46. Reitan, T. (1998). Theories of interorganizational relations in the human services. Social Services Review, 72, 285–311. Rubington, E., & Weinberg, M. (Eds.), (1995). The study of social problems: Seven perspectives (5th ed.). New York: Oxford University Press. Sax, S. (1990). Health care choices and the public purse. Sydney: Allen & Unwin. Schneider (1985). Social problems theory: The constructionist view. Annual Review of Sociology, 11, 209–229. Spector, M., & &Kitsuse, J. (1987). Constructing social problems. New York: Aldine De Gruyter. Susman, J. (1994). Disability, stigma and deviance. Social Science & Medicine, 38(1), 15–22. Unsworth, C., Osberg, J., & Graham, A. (1997). Admitting paediatric trauma patients to rehabilitation following acute care: Decision making practices in the USA and Australia. Pediatric Rehabilitation, 1(4), 207–218. Unsworth, C., Thomas, S., & Greenwood, K. (1995). Rehabilitation team decisions on discharge housing for stroke patients. Archives of Physical Medicine and Rehabilitation, 76, 331–340.
2210
M. Foster, C. Tilse / Social Science & Medicine 56 (2003) 2201–2210
Williams, S., & Shah, S. (1995). The introduction of casemix across Australia: Implementation issues for occupational therapists. Australian Occupational Therapy Journal, 42, 143–150. Wrigley, J. M., Yoels, W. C., Webb, C. R., & Fine, P. R. (1994). Social and physical factors in the referral of people with
traumatic brain injuries to rehabilitation. Archives Physical Medicine and Rehabilitation, 75, 149–155. Ylvisaker, M., & Feeney, T. (1995). Traumatic brain injury in adolescence: Assessment and reintegration. Seminars in Speech and Language, 16(1), 32–45.