Patient education for the millennium: beyond control and emancipation?

Patient Education and Counseling 31 (1997) 151–158

Patient education for the millennium: beyond control and emancipation? A.M. Skelton* Division of Education, The University of Sheffield, The Education Building, 388 Glossop Road, Sheffield S10 2 JA, UK Received 12 December 1995; revised 15 May 1996; accepted 12 November 1996

Abstract This paper reports on a study carried out in Nottinghamshire, UK, which focused upon patient education for low back pain in general (family) practice. This study found that patient education could not be viewed simply as either a repressive social control mechanism or as a vehicle for patient empowerment and social change. The paper suggests that a new theoretical and practical orientation to patient education is required which transcends binary categorizations. The existing control / empowerment dichotomy offers a persuasive, yet restrictive conceptualization of patient education which has created rival camps of theoreticians and practitioners intent on demonizing each other. In the light of presented findings, the study suggests a new trajectory for patient education focusing on local possibilities for change. 1997 Elsevier Science Ireland Ltd. Keywords: Patient education; General (family) practice; Low back pain; Patient empowerment; Compliance

1. Introduction The call for patient education or information comes from two different directions — a patientcentred one in which autonomy is the key word and a medico-centred one in which compliance still reigns (Fahrenfort [1]: p. 27). In a ground-breaking paper, Fahrenfort [1] outlined two principal models of patient education which she called ‘medico-centred’ and ‘patient-centred’. These models have subsequently gained widespread credibility in the literature as useful aids to *Corresponding author. Tel.: 00 44 114 2228120; fax: 00 44 114 2796236; e-mail: [email protected].

understanding theoretical, practical and policy issues related to patient education. The language, ideas and purposes associated with these models differ, as can be seen from Fig. 1. The two models are distinctive with respect to their underlying assumptions and concerns. Patient education in the medico-centred model, for example, focuses on the ‘problem’ of patient control or non-compliance. It has been estimated, for example, that as many as 50% of patients ignore their doctor’s advice, and fail to follow prescribed therapeutic regimens [3]. It has been reported that in the UK alone, this non-compliance accounts for in excess of £300 million per year of hoarded or wasted drugs [4]. In the light of such problems, patient education is seen as a means to instigate controlled behaviour in patients and encour-

0738-3991 / 97 / $17.00  1997 Elsevier Science Ireland Ltd. All rights reserved PII S0738-3991( 96 )00986-X

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Fig. 1. Two models of patient education [2].

age beneficial health gains. Both the information itself and the way it is provided seek to persuade the patient of the doctor’s view of the presenting health problem and its appropriate management. This model therefore endorses the classic Parsonian view of the patient’s role in medicine. The patient is expected to be passive and dependent on the doctor’s advice within an unequal relationship [5]. The teaching emphasis in the medico-centred model keeps information as simple as possible in order to facilitate its retention [6–8]. The health professional is viewed as the legitimate holder of valued, medical information which is conveyed to the patient who absorbs the information uncritically. The chief problem in this model appears to be the patient who is seen to be unable to understand and / or to retain information and lacking motivation. For this reason, external rewards are often included as part of compliancebased education, to encourage the patient to remember information and / or follow prescribed skills and attitudes. The teaching methods employed in this model emphasise content and assume a simple oneway flow of information from the health professional (teacher) to the patient (learner). The lecture, overhead projector and filmstrip displays, leaflets, posters, and the one-to-one directive all assume that a rational argument can be formulated which will convince patients that they need to change their behaviour in accordance with the presented message. Whilst there have been some important medical developments as a result of compliance initiatives in relation to conditions like hypertension [9], such initiatives do not always lead to health gains in patients [10]. This may be due to the fact that although patients possess their own lay theories of health and disease, these are not taken into consideration and built upon in medico-centred approaches to patient education. In the patient-centred model, by contrast, the

patient is put at the centre of the educational process. Unlike the medico-centred model, it seeks to elicit and satisfy those needs which patients express themselves, and sees this as the first step towards encouraging patients to take greater control over their own health. A key focus in this model is involving the patient in decisions which affect their health — which might include decisions about likely causes, initial treatments and longer-term management regimes. Patient involvement in decision-making is seen as an important educational process in itself, which develops the patient’s understanding and encourages greater self-reliance. It is also seen as an expression of a patient’s social rights in contemporary society: to have access to information and to exercise control over their own bodies [11,12]. The teaching emphasis in this model is to ‘blur’ the traditional boundaries between professional-as-teacher and patient-as-learner. The patient’s lay health beliefs and knowledge are considered to be of equal or greater value than the professional’s medical knowledge. The former are seen to be a product of experience, often informally developed but ‘tested’ over time, across different situations [13]. The professional’s knowledge is seen as theoretically-based, offering important generalisations which may be difficult to apply with particular people in particular situations [14]. As a result, both patient and professional have an important part to play in the consultation, leading to a real sharing of perspectives which has been called various things in the literature such as: ‘mutual participation’ [15], ‘partnership’ [16], and ‘dialogue’ [1]. Skills which are required in this process appear to include: professional sensitivity to patient experience and knowledge, expressed through active listening; professional ability to ‘negotiate’ decisions with patients [17]; and patient ability to contribute to the consultation, for example, through asking questions,

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seeking explanations, stating preferences and forwarding ideas [18,19]. Teaching methods are more informal, participatory and experiential and encourage patients to disclose and reflect upon their existing understandings as a basis for future learning. The purpose of the patient-centred model is personal and collective empowerment. Some approaches within the model stress the importance of patient involvement in needs identification and health decision-making as a basis for personal development and effective self-care [20]. Other approaches emphasise the importance of making patients aware of the social, economic and political barriers to collective health as a step towards political action [21,22]. Various criticisms have been made of the patientcentred model. It has been argued, for example, that not all patients want to be involved in discussing their illness and in making health-related decisions [23]. It has also been suggested that patients may not possess the skills required to play an active role in the consultation, with some studies specifically seeking to enhance patient skills such as question-asking [24].

2. The practice of patient education What are the general goals of patient education, and what means do educators have at their disposal to reach these goals? Is the practical day-to-day state of the art as expressed by these means in accordance with, or at least not contrary to, the lofty ideas that somehow seem to lie behind our efforts at implementation? (Fahrenfort [1]: p. 25). The practice of patient education is thought to lag well behind patient-centred models [1,2,19]. Despite a growing awareness of the limitations of the medico-centred approach during the last 20 years [25,26], there is evidence to suggest that this model still exerts a considerable influence over practice across a wide range of health care settings. In UK hospitals, for example, it has been argued that patient education tends to be administered through pre-designed protocols, which have been professionallydetermined and do not take into account the needs of particular patients [2]. In hospitals in the USA the

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situation appears to be similar, and it has been suggested that empowerment models of patient education have failed to exert any real influence at the practical level [1]. This situation may be related to the training of undergraduates in medical school which focuses on factual information, rather than communicating with patients [27]. It has also been argued that the middle-class roots and related privileges of most doctors discourages them from questioning the basis of existing social relations [28] and that medical training itself seldom includes a ‘critique of the social order’ [29]. In general (family) practice, a similar picture prevails. Despite alternative possibilities, the traditional medico-centred approach to patient education appears to remain dominant. Research studies of practice indicate that general practitioners recognise the importance of patient education, yet display little understanding of its different meanings and practices. For example, it has been demonstrated that general practitioners conceive patient education in a restricted sense, with themselves as the sole providers of information and explanations for patients’ presenting complaints [30]. Whilst it has also been found that general practitioners include a major educational effort in as many as 20% of all consultations, a significant proportion of this educational activity involves conveying instructions and explanations rather than ascertaining patient understanding of the information conveyed [31]. Finally, a different study found that although general practitioners provided patient educational information in most consultations, the information was superficial and could not be categorised as ‘real explanations’. Furthermore, patients were passive during the process of information-giving and only 25% of all consultations included instances of patients actively asking questions [32].

3. A research study The author carried out a study of patient education in Nottinghamshire, UK, between November 1991 and December 1993. The study was carried out in general practices within the county and focused on low back pain (LBP), a condition which almost everyone experiences at some point in their lives

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[33,34]. The research undertaken involved collecting interview data from patients and general practitioners about patient educational processes for LBP. Details of research methodology, practice / patient selection and inclusion criteria for LBP have previously been reported [35,36] so these will not be considered at any length here. The purpose of the research was two-fold: firstly, to provide a detailed illustration of patient educational processes to explore the issues of control / empowerment. In other words, do general practitioners control patients through educational processes or do they set them free? Secondly, the research sought to find out how educational processes within the context of general practice might reflect, reproduce and / or transform wider patterns of social life. In Section 4, a number of salient features of patient education for LBP are presented which were revealed through my data. In Section 5, an analysis of these features is offered which draws on postmodern ideas (in particular the work of Foucault and Lyotard) which have recently begun to be applied to the field of education. Postmodern insights provide a basis from which to challenge the restrictive control / change (empowerment) dichotomy which dominates current conceptualisations of patient educational theory and practice.

4. Patient education for LBP From my data, it appeared that general practitioners controlled both what and how patients learned about LBP. For example, there was little negotiation of what content areas constituted patient education for LBP. For most general practitioners, ‘prevention’ was the central educational issue and the problem was not how to open up other areas which may have also interested or concerned patients, but how to get patients to internalise prescribed information about prevention practices (for example, how to lift, bend and sit, the benefits of weight reduction and taking regular exercise). Most general practitioners adopted a conservative, ‘uncritical’ form of patient education. Focusing on prevention meant that the patient was implicitly blamed for LBP and the economic, social, cultural and political factors which may sustain or create the

problem were left unexposed. Promoting prevention in the absence of conclusive proof as to its management efficacy [37,38] also protected general practitioners from revealing limitations in their understanding of the condition. In emphasising self-reliance, patient education also discouraged patients from using medical services and distracted patients from making any demands for a better resourced National Health Service. General practitioners presented knowledge about a second content area — LBP causation — as though it was an ‘objective’ affair. Whilst identifying the cause of LBP remains fraught with difficulties [39], providing an explanation offered the advantage of appeasing patients and retaining doctors’ professional status as practitioners who possess a specialist body of knowledge and skills. It also hid from patients the real state of current knowledge about causation which defines it as a highly contentious area. The way in which the issue of causation was handled, therefore, perpetuated the idea that there were ‘right’ and ‘wrong’ explanations for LBP. This medico-centred outlook discouraged patients from considering the possibility of multiple diagnoses / theories which might include their own ‘lay’ theories. Teaching and learning processes typically involved general practitioners transmitting knowledge to patients, in a one-way flow of information. Underpinning this norm were a number of assumptions about patients as learners. It was assumed, for example, that patients failed to retain or follow prevention advice and therefore needed to be informed at every opportunity of how to manage their LBP through prevention. Patients were therefore sent the implicit message that they were failing in their preventive attempts. As a result, normal educational interactions became a vehicle for implicitly punishing patients for their (assumed) non-compliant behaviour. General practitioners used two principal teaching strategies to promote effective learning in patients. The first was simplification. This involved simplifying medical language and concepts through the use of lay terms and ideas. Whilst patients appreciated this strategy, it denied them access to high status knowledge and made it difficult for them to enter into any real discussions about their condition. It also

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protected general practitioners from having to reveal gaps in their own and current medical knowledge. A second strategy general practitioners used was reinforcement. It was thought that repetition assisted patients in learning about prevention principles more effectively. However, this process also led to a reductionism in terms of the quality of information patients received. Knowledge becomes reduced to a commodity as attention gets directed to how much information was passed on, how much was retained and how much more needs to go into the ‘patient’s head’. Most patients viewed general practitioners as experts who possessed both the medical knowledge and authority to tell them about their LBP and how to manage it. Within the consultation, this led to a particular delineation of roles and responsibilities. Patients played a passive role in proceedings, asking few questions and doing little to challenge received information or alter the course of events. General practitioners made most of the decisions concerning how consultation time was spent and utilised for the on-going management of LBP.

5. Analysis In order to make sense of these findings, the two principal models of patient education were applied but found wanting. Initial impressions suggested a ‘medico-centred’ analysis; general practitioners dominated most aspects of the educational encounter, offering patients little opportunity to challenge professional judgement in the light of their own understandings and concerns. When considered carefully, however, the problem with this interpretation was that it assumed a power struggle between general practitioner and patient which was rarely evident in my data. Yes, general practitioners dominated, but most patients were happy about this. The view that patients may accept this situation in a passive way — out of ignorance, ‘false consciousness’ (ideological manipulation) or because they lack the skills which might strategically free them from their doctor’s power (such as question-asking, asserting personal goals) — could not be upheld in this research study. Rather patients voluntarily chose to accept the significance of prevention advice, infor-

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mation and practices because of their wider cultural association with health, freedom and personal choice. Losing weight, taking exercise and deporting themselves appropriately were all bodily controls that patients entered into freely, given that — as for most people in our society — these activities represent accepted ways of improving their quality of life. It is this unquestioned ‘goodness’ of prevention which makes it so potent as a controlling force in our society. Those values which underpin prevention, which are central to most developed societies (for example: productivity — ‘I need to keep this body in good shape so it can carry out its responsibilities’; rationality — ‘this body can be understood and controlled by the application of quasi-scientific procedures’; and individualism — ‘I am a self-contained body responsible for my own livelihood and destiny in the labour market and in society’) thereby remain unexplored and unchallenged, as ‘natural’ expressions of the existing social order. Reinterpreted in this way, it is not possible to reduce patient education to a mechanism in and through which general practitioners simply exercise control over patients. Neither is it possible to claim that patients were suffering from a lack of empowerment (i.e. in need of an empowerment model) or freedom, since they freely and actively chose to enter into an unequal relationship with general practitioners that centred prevention as a management response to LBP. This positioning by patients can be explained by the inherent power of prevention as a discourse (and set of practices) which is taken for granted in society. Prevention is associated with health, freedom and self-responsibility and is accepted by general practitioners and patients as something which is ‘naturally’ good. Patients are not ideologically ‘duped’ into accepting prevention; rather they actively engage in prevention activities out of a rational understanding of what these activities represent in the culture (normality) and at a deeper level, out of a desire to become that identity which these activities offer those who engage in them (an acceptable member of society). We are left with the apparent paradox that patients choose freely to behave in ways that ultimately control themselves. They appropriate popular health-related discourses — like prevention — out of a desire to appear normal and to be accepted in society. The issue for

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patient education then might be, how do we encourage patients to question normative discourses and their implicit forms of behaviour? How do we encourage them to respect their own individuality and complexity free from the defining power of any totalising discourse (including those that claim to emancipate the patient?) It is to these questions that I will now turn in Section 6.

6. Discussion: patient education for the millennium? My study brings into question medico-centred and patient-centred models of patient education. Their associated key words — control and empowerment — become confused and blurred when applied to real contexts involving doctors and patients. In Section 5 the point was made that patients actively choose to enter into an unequal relationship with their doctors. Prevention — often associated with empowerment due to its emphasis on self-responsibility and personal autonomy — in this study became a vehicle for self-control with its emphasis on producing a socially acceptable productive, rational and individualistic body. These contradictory ‘plays’ on the control / empowerment dichotomy bring into question its usefulness. What we need is a new language for thinking and talking about patient education which transcends the restrictions imposed by this dichotomy. In seeking to promote discussion and debate about what such a language might entail, it is instructive to turn to the work of Anthony Giddens. In his book, The Transformation of Intimacy, Giddens (1992) talks of the ‘pure relationship’. He states (p. 190): The involvement of individuals in determining the conditions of their association – this statement exemplifies the ideals of the pure relationship. It...gets to the heart of the democratising possibilities of the transformation of intimacy...Not just respect for the other, but an opening out to that person, are needed for this criterion (the pure relationship) to be met. An individual whose real intentions are hidden..cannot offer the qualities needed for a co-operative determination of the conditions of the relationship [40].

In the light of Giddens’ words, it is interesting to pose the question, ‘Freed from the totalising discourses of medico-centred compliance and patientcentred empowerment, how might a doctor and patient determine the conditions of their educational association?’ And further, ‘How can doctors and patients get in touch with and express their own desires and orientations to an educational process without becoming slaves of predetermined and ‘coherent’ organising principles?’ To begin to answer these questions, we need to turn to the type of society we will be living in as the dial reads year 2000. Giddens suggests that ‘advanced’ societies in the West are reaching a turning point. He calls this ‘late modernity’, others have called it ‘postmodernity’ [41,42]. One defining feature of postmodernity is the fragmentation of belief systems as older fundamentals of how to live come to be increasingly questioned. Life becomes more uncertain bringing with it both excitement and vulnerability. Within postmodernity, therefore, there can be no assumed universal agreement about social purposes (e.g. the need for social control or empowerment). Similarly there is less conviction about the degree of social progress any ‘grand movement’ or ‘narrative’ (like social control or empowerment) can achieve in a society which is becoming more complex, uncertain and less amenable, therefore, to rational planning. Within this context, Giddens suggests that ‘local agreements’ have to be forged between people working / living / relating in particular contexts. Applied to patient education, this might mean a proliferation of different approaches unfolding as doctors and patients determine particular educational associations rather than a new ‘regime of truth’ [43]. Respect, ‘opening out’ to the other, and each person making their intentions explicit would be key qualities in this endeavour. It would be difficult and indeed inappropriate to pre-specify how these qualities might be realised in the context of particular relations and contexts. Furthermore, once an initial sharing of intentions had taken place in an educational association, this would not necessarily ‘guarantee’ what happens next in terms of process or progression; rather both players in the professional relationship might choose not to disclose further information about themselves (i.e. they might prefer a less open /

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whole person view of education) and / or to remain open to the on-going ‘internality’ of their educational association (what evolves in the course of relating) leading to a changeable, non-linear and potentially disrupted ‘programme’ or ‘curriculum’ [44]. For emancipation theorists this might make patient education sound very apolitical. But this is to see ‘politics’ or ‘political strategy’ as taking only one form. For Giddens, the democratisation of relationships — both personal and professional — is a necessary prerequisite of social change. A successful change strategy might now depend less on the identification and grand overthrow of political structures and more on the transformation of relations between people at the local level. A patient education for the millennium should seek to define itself democratically through individual doctors and patients working out the conditions of their educational association. This should help achieve the immediate educational aims of those involved and develop an understanding of the democratic process which is crucial in health care and in broader change movements which support social justice. Echoing Lyotard, Usher and Edwards [42] state that (p. 183): Justice can only be built around the recognition of the variety that exists...Resistance is therefore not about establishing an alternative which is doomed to failure but about recognising ambiguity and working at a localised level to gain consensus.. [42].

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