Proposal Draft: Methodology Section

“The Lived Experiences of Persons with ME/CFS with respect to their Interactions with Social Institutions”

Geoffrey Hallmann
16 November 2007 School of Exercise Science and Sport Management

Proposal Draft – Methodology Section Geoffrey Hallmann

3. Research Problem
The purpose of this research is to understand the lived experience of people who are suffering Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Rather than being a general review of lived experiences, this research will ask the question – The purpose of this research is to understand the lived experience of people who are suffering Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). nature, “exploratory” by necessity.(Neuman, 2006: 33-34) Rather than being a general review of lived experiences, this research will ask the question – “What are the lived experiences of Australian’s with ME/CFS with respect to their interactions with social institutions?” It is, by its very

4. Formulation of a Research Paradigm
In formulating the research paradigm, it will be necessary to make assumptions about participants with respect to their diagnosis of ME/CFS and, in particular its symptoms. Due to the evolution of ME/CFS a number of definitions have arisen throughout the world. For the purposes of this research, the following definitions are currently in use within Australia: 1. The 1994 Fukuda revised US CDC definition of Chronic Fatigue Syndrome (Fukuda, 1994: 953-959); 2. The 2002 Australian Guidelines (Loblay, 2002) 3. The 2003 Canadian Consensus Guidelines definitions of CFS/ME (Carruthers, 2003) The justification for satisfying these three criteria extends from the use of all three criteria within Australia. The Australian Guidelines are in part based upon the US CDC criteria. (Loblay, 2002), whilst in 2006 a copy of a summary document (Carruthers, 2005) of the Canadian Guidelines has been distributed to all GP’s within Australia.(ME/CFS Society of NSW Inc, 2006) To this end, all three criteria are applicable.

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Proposal Draft – Methodology Section Geoffrey Hallmann

5. Research Methodology
5.1. Discovering a Methodology The process of discovering a methodology was a difficult and arduous process. Rowan says of the process of research:
“… you don’t have to settle for second best. You don’t have to accept projects you don’t

believe in and don’t really want to do. You don’t have to toe the line of an orthodoxy which is in many ways illusory. You can do research which is worthwhile for yourself and for the other people involved in it. You can do research on questions which are genuinely important.”(Rowan, 2001: xxxvii)

Understandably careful consideration and a great deal time was invested into the issue of methodology. Neuman (2006) requires that one begin the qualitative research process My place in this research, by necessity, is already well As an “insider” with the condition, I hold with “a self-assessment and reflections about themselves as situation in a sociohistorical context” (Neuman, 2006: 14). established above (Bentz, 1998: 125-126)

certain responsibilities, issues and biases that can influence my “objectivity”. Providing an explanation of the chosen methodology and my reasons for that decision are paramount to the ideal of transparency (Sarantakos, 1993: 21, Dreher, 1994: 281, Koch, 1995: 827). The existence of political considerations must also come under consideration (Neuman, 2006: 504). Morris affirms this, stating:
“The relationship between the method of research and the sought outcomes of the research revolves around methodology which is inherently political …The consensus is that the focus on objectivist issues of reliability, validity and generalizing has tended in the past to obscure the political aspects of the substantive issues under study.” (Morris, 2003: 64, Citations Omitted)

Neuman advises that a “more realistic view” should be adopted by the researcher, acknowledging that they must “deal with an array of ethical and political concerns”, including facing “economically or politically powerful groups in society or government who attempt to limit what they can study, how they conduct research, or how they disseminate the findings” (Neuman, 2006: 504)

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had arrived at There is a use of “precisely measuring variables and testing hypotheses that are linked to general Quantitative research opens up the opportunity to cover a wide regional area (such as the length and breadth of Australia) 4 .Proposal Draft – Methodology Section Geoffrey Hallmann To achieve the goals of this research. Neuman argues that whilst the two approaches may differ in many ways. the methodology and methods must be appropriate to the question at hand and take account of mental and physical limitations of ME/CFS. and a large number of participants. texture and feeling of raw data because their inductive approach emphasizes developing insights and generalizations out of the data collected. measurement and sampling because their deductive approach emphasizes detailed planning prior to data collection and analysis.2. 2006: 149) Whilst “qualitative” data yields a richer textual content in its data. Consideration of the Qualitative Research 5. it is limited to a small number of participants when one works to a time and financial restriction. 1990: 62) With this idea in mind it was possible that prior researchers had considered the theoretical concepts that may have utility in this work.”(Neuman. “they complement each other as well” (Neuman. Both have their values: “Quantitative researchers are more concerned about issues of design.2. or have developed valid instruments or indeed. 2006: 151). With this in mind I was conscious of the desire to obtain data from multiple participants throughout Australia. The first is “qualitative research” and the second is “quantitative research”. but also for myself (ie as a researcher with the condition) (Morris. 5. “Quantitative” researchers rely upon a positivist approach to social science. Qualitative researchers are more concerned about issues of richness. 2006: 151). not only for the participants. causal explanation”(Neuman.1 Guidance from the Past One of the pragmatic goals of the literature review is to “avoid or solve problems others have encountered in their research” (Dane. Only quantitative methodology would allow the acquisition of data from . 2003: 64-65) There are two methodologies to consider for the research.

Proposal Draft – Methodology Section Geoffrey Hallmann statistical analyses appropriate to my work (Dane. applying disparate approaches. 2007). data and outcomes produced. The qualitative PhD research of Travers (2004) and Morris (2003) and to a lesser degree that of Austin (1994) and the broader study of invisible chronic illness (including ME/CFS) from Vickers (1997) pointed towards the preference of researching lived experiences of ME/CFS in Australia. Travers reveals a desire to add a new understanding of the condition: “The predominance of the positivist focus within CFS research and the quantification of findings have not included the voices of those affected … a design that utilised qualitative method was chosen because it could offer something new to our understanding of CFS. In seeking an answer to her own methodological dilemma. 2006: 158) Insight was provided into methodology. I drew upon my resources to establish an understanding of past research in order to guide my approach to the qualitative issue. Complementing this idea is the concept of the “borrowed” ideals of brioclage (Neuman. Neuman says bricolage requires the “mixture of using diverse materials. Whilst the overseas research was useful to the literature review. 2004: 61) 5 . The literature review demonstrated a dearth of published research from a qualitative perspective and particularly from an Australian perspective (Australian Digital Theses Database. 2006: 158). methods. The approach was likely to highlight lines of inquiry for future studies” (Travers. there was little offered in the way of methodology. 1990: 62). and assembling bits and pieces” in a “skilled” and “flexible” manner (Neuman.

2. 1993). From a medical and sociological perspective. exploratory analysis (Vickers. multiple case study. 2004) and a construct critical ethnography. we have an excellent outline of the nature of the social system as a whole. Morris works within the specific area of the lived experience of those with ME/CFS in the tertiary education setting. 1981: 33) If we know the law of any society. with idiographic and verbal literature prevailing (Evan. legal principles. 2003) being utilised. 2000: 285-292). 1990: 31). So the question remains. a fundamental framework (a skeleton. stating that: “… the law in any social system is. 5. 1990: 31) Qualitative research and legal phenomena has held little interest. and their application to a multitude of scientific conflict situations” (Evan. seeking to reveal the “lived experience” of ME/CFS. 1992: 1). if you like) of the nature of all its forms of associations and institutions. Heideggerian. Legal scholarship traditionally preoccupies itself with “legal rules. On all occasions the methodology varied. hermeneutical phenomenological. This research is not aimed at the answering of practical questions and therefore does not fit within the realm of the “social scientific study of law” (Cotterrell. Sociology of Law 6 .Proposal Draft – Methodology Section Geoffrey Hallmann Whilst Travers examines the condition from perspective of the narratives of “illness experience” and “self”. case study and (Morris. Austin on the other hand was more general in the research question. can qualitative methodologies have application in what is effectively a cross over into legal research? Whilst qualitative methodology is well suited to the understanding of medical conditions (Banakar. ethnographic.”(Fletcher. with Heideggerian phenomenology (Austin. in fact. However. grounded theory/reflexivity (Travers. 1997). qualitative research appears to be appropriate. this research is entirely unique due to the intrusion of the law Fletcher summarises this view. the law brings with it a history of varied approaches.2. If the law is an issue in the study of ME/CFS. across “social institutions” and society as a whole.

244-273). Vago (1988) asserts: “Sociology is concerned with values. 14-25. textual reasoning. 2000: 274). resolution are central to both disciplines. but it stopped short of what Banakar (2000) describes as “taking ‘the final and logical step from sociology into law’ leaving the black-letter or substantive aspect of the law intact.”. sociology arguably goes to the heart of this research (Neuman. 111. interaction patterns. 2003: 1-5. 1988: 2-3) The goal of this research is to cross that divide and the existence of underlying legal inquiry arguably places this in the “sociology of law”: 7 . Morris’s investigation into ME/CFS focused on a narrow field relating to “human rights in tertiary education in Australia”(Morris.Proposal Draft – Methodology Section Geoffrey Hallmann The “sociology of law” is a branch of sociological study that is regarded as marginal to sociology. Morris’s examination of disability issues crossed into the realm of legal inquiry through a social inquiry as to the disability experience (Morris. Both sociology and law are concerned with norms. 2000: 273) By attempting to understand the lived experiences of those with ME/CFS through an exploratory approach. 2003: 1).” (Vago. (Cotterrell. particularly when it is performed by an “outsider” sociologist and not an “insider” of the legal profession (Banakar. 2006: 1-2). 1992: 8. whilst at that same time that it “co-exists uneasily with the established discipline” of law. 2000: 273) Like Banakar. 43-63. Banakar. With various legislation and policies considered this was arguably a study of the “interaction between legal and social factors”. The relationship between the law and sociology is inseparable. many of which are embodied in law as substantive rules. Morison and Leith (1992) argue that “most academics feel able to dismiss sociological studies as peripheral to the ‘real’ nature of law as an activity of heightened academic.” (Banakar. rules that prescribe the The study of conflict and conflict appropriate behaviour for people in a given situation. and ideologies that underlie the basic structural arrangements in a society. 224-225. 201.

the formulation of hypotheses are difficult or even impossible. 34).3 Considering the Essentials of Methodology In order to explore the lived experiences of the participants. it was natural to assume that a qualitative approach forms a significant part of the approach. concepts of structure. by asserting that one should begin with a loose definition of the topic under study until the participants give meaning to it. 2006: 8 . (Denzin. hence the deductive methods are ruled out as appropriate methodology (Sarantakos. With this in mind I was conscious that once I selected an appropriate methodology I must have an accompanying method. images of society. 2006: 34). 1993: 15).” (Sarantakos. or. The nature of exploratory research may well dictate the development of new techniques for measuring and locating future data (Neuman. 5. 1993: 106)? In the research at hand there is no theory to test. is which methodology is most suitable for the research (Sarantakos. legal experience. guiding my hand on this thesis. 1993: 114) Exploratory research addresses the “what” questions of social activity (Neuman. It is regarded as “difficult to conduct because there are few guidelines to follow” The focus may well be on the generation of “new ideas. This work is one of exploration: “Exploratory Studies are carried out when there is not sufficient information about the topic and. however. 1972: 76-91). 2006: 34). thus.2. it was possible to consider the methodological options available to me. 2006: 34). it follows that it cannot be constrained within particular social theories. but as a continually self-reflective and self-critical enterprise of inquiry aspiring towards ever broader perspectives on law as a field or aspect of social experience. The question. conjectures or hypotheses” (Neuman. 1992: 210) Neither is sociology of law constrained methodologically by its drive to broaden partial perspectives on In keeping with the lack of constraints. Denzin (1972) is most helpful in (Neuman.Proposal Draft – Methodology Section Geoffrey Hallmann “If sociology of law is portrayed … not as an academic discipline or sub-discipline with specific methodological or theoretical commitments. indeed.”(Cotterrell. visions of truth.

I freely admit my personal connection with the research and this has influenced the way in which I will collect and interpret the data (McMurray. and neither does listening. with my interpretation required to give them meaning. 2006: 30). 1997: xi . Whilst stories are one part of the equation. By utilising the lived experiences of the participants I am arguably giving voice to what Frank describes as a “wounded storyteller”: “[I]ll people [are] wounded storytellers … The ill person who turns illness into story transforms fate into experience.” (Frank. These bonds expand as the stories are retold. I believe I can reveal the complexity of the ME/CFS phenomenon (Annells. But telling does not come easy. 2000: 1).Proposal Draft – Methodology Section Geoffrey Hallmann In understanding ME/CFS there is little doubt from the literature that one must be conscious of the political influences that flow throughout this research – indeed once could argue it is steeped in politics (Millen. sufferer. 2006: 56). (McMurray. 2006: 150). 2006: 30) My method needed to obtain and record stories. the common bond of suffering that joins bodies and their shared vulnerability… Through their stories. drawing out the experiences of others. Millen. Those who listened tell others and the circle of shared experience widens. I have my own experiences. the disease that sets the body apart from others becomes. It must capture the 9 . 2006: 30). I wanted confidence in the information being obtained (Neuman. in the story.xii) Epistemological imperatives are the primary justification for this research (McMurray. I felt the need for information from a greater number of people with ME/CFS. Seriously ill people are wounded no just in body but in voice. (McMurray. 2002: 1. I am an ME/CFS My position as an insider perspective will arguably assist in the creation of usable research. the ill create empathic bonds between themselves and their listeners. My own ME/CFS and interest in the research has already been declared. They need to become story tellers in order to recover the voices that illness and its treatment often takes away. and they too form part of the politics that influence the methodology. 2006: 30) By using such a process of discovery.

This triangulation process would allow me look at the issue “from several angels” (Neuman. 2003: 65) Flexibility is therefore an imperative. Consideration of this point is at the forefront of my thinking. 2006: 149-150. 2006: 57). The method to be used must give due consideration to the condition and not merely reflect what I myself deem to be appropriate. 5. 1993: 136) As established previously. FINISH OFF 10 .”(Kellehear. Kellehear argues that account must be taken of the participant and their needs when undertaking research: “The people investigated by the study also play a significant role in the part of selection and this … can be quite significant … the nature of the people one is interested in studying should help decide rather than simply one’s personal philosophical preferences. it will be essential to test these experiences against a sample of the ME/CFS population. 2006: 150).3.Proposal Draft – Methodology Section Geoffrey Hallmann ME/CFS phenomenon to have validity (Hycner.4. unpredictable and disabling. using quantitative and qualitative data (Neuman. (Morris.” (Morris.4 Methodology. 1999: 159). Morris has echoed this assertion when it comes to those with ME/CFS. Consideration of the Quantitative Approach As revealed above. Method and the Participant There is one inescapable consideration that must be taken on board when arriving at a methodology and method for ME/CFS – I am dealing with people who quite sick. 5. It was clear that once these stories are gathered and analysed. Quantitative methodologies come from the Positivist approach to research. noting: “The medical condition and physical status of the research participants impacts on the gathering of the research data and the data analysis. 2003: 65) ME/CFS is by its very nature. Annells.

however.”(Neuman. 2. These approaches are founded in “different traditions in social theory” with “diverse research techniques” that provide a way to “observe. exact measures and ‘objective’.5. In Neuman’s view. 2006: 80). how one it to approach phenomena.2. Positivist social science Interpretative social science Critical social science These approaches provide different ways to look at the world. Positivist Paradigm Positivist social science “emphasizes discovering causal laws. It is effectively number crunching. careful empirical observations.” Couch summarises the (Couch. social research and as such there are a number of options available to me in order to draw out the data I seek. draw out the lived experiences of those being studied.1 The Nature of Social Research This research is by its very nature. measure and understand social reality” (Neuman. 2006: 82) Positivism does not. and value research. 1987: 106) There are three approaches to social science research: 1.”(Neuman. 2006: 81) Positivist research seeks “rigorous. and they test hypotheses by carefully analyzing numbers from measures. 2006: 80) 5. 2006: 81) 11 . Choosing a Methodology 5.5.5. and each regards the efforts of the others as at best misguided … The differ on what phenomena should be attended to. 3.Proposal Draft – Methodology Section Geoffrey Hallmann 5. frameworks as follows: “The ontological and epistemological positions of these … research traditions provide the foundation of one of the more bitter quarrels in contemporary sociology … Each side claims that the frame of the thought they promote provide a means for acquiring knowledge about social phenomena. representing “fundamental differences in outlook and alternative assumptions about social science research” (Neuman. “it is to be avoided. and how the phenomena are the be analyzed.”(Neuman.

objectivity is not possible. phenomenological. Positivism sees the social scientist as “totally objective” and nothing more than an observer. Cotterell (1992) argues that positivist legal theory is flawed.(Neuman. It “seeks test of the ‘legal’ which make it possible to identify the data of law. ignoring social context. 2006: 87) Interpretative social science draws its characteristics from the 19th century theory of hermeneutics. Interpretative Paradigm In contrast the positivist approach. 2006: 95) Neuman summarises the approach: “Interpretative researchers often use participant observation and field research. and being antihumanist. 2006: 87) interpretative approach is critical of the positivists “for failing to deal with the meanings of real people and their capacity to feel and think. the interpretative approach “emphasizes meaningful social action. “legal positivism” dominated the jurisprudential school of research for “much of the past one and a half centuries” (McCoubery. being studied.3.(Neuman. 5. idealist.5. 1991: 25) positivist meaning of the word. subjectivist. and without considering judicial attitudes or values” (Cotterrell. These techniques require that researchers spend many hours in direct personal contact with those Other [Interpretative Social Scientist] researchers analyze transcripts of 12 . ethnomethodology. It “ignores the role of values in law and the way in which law is established in interpretation” and cannot “cope with complex relationship between rules and discretionary powers of officials in legal regulation in complex contemporary societies” and does not assist in “understanding processes of legal change” (Cotterrell. Where I am an insider doing the research. 2006: 87) There are several types of interpretative social The science – hermeneutics.”(Neuman. as far as possible without looking behind legislative rules to the process by which they were created. socially constructed meaning and value relativism. Whilst I have declared my interests I am not “objective” in the Habermas points out that “any form of knowledge is an instrument of self-preservation” (Easterby. cognitive. 1992: 10).”(Neuman. 1996: 11). constructionism. and qualitative sociology. 1992: 10).Proposal Draft – Methodology Section Geoffrey Hallmann In law.

mirco-level. Critical Paradigm The third and final approach for consideration is the critical approach.”(Neuman. and believes it “defends the status quo because it assumes an unchanging social order instead of seeing current society as a particular stage in and ongoing process. but so too does the interpretative approach because it allows for the collection and review of lived experiences of participants. The Ontological and Epistemological Approaches Epistemologically. and valuebased activism for human empowerment. the ideal when it did not challenge the way social institutions operated. To [the critical] researcher. short term settings while ignoring the broader and long term context. reconcile? 5. approach is positivist in nature. to understand details of interactions in their context. It fails to take a strong value position or actively help people to see false illusions around them so that they can improve their lives.6. Critical research therefore held the greatest appeal.”(Neuman. 2006: 95) In my research the critical approach resonates strongly. values and attitudes might bias this collection of the data. however. 5. 2006: 95) Neuman notes that the critical approach criticizes the interpretative approach: “…for being too subjective and relativist … [It] treats people’s ideas as more important than actual conditions and focuses on localized.4. even though this may 13 . It was not. The use of quantitative methods however.Proposal Draft – Methodology Section Geoffrey Hallmann conversations or study videotapes of behavior in extraordinary detail. looking for subtle nonverbal communication. multiple levels of reality. allows the Such an The question is then how the two can collection of greater numbers across a broader geographical area. the interpretivist paradigm acknowledges that my own personal beliefs. [interpretative social science] is amoral and passive.”(Neuman. 2006: 94) The interpretivist approach appears to “fit” well with the idea of lived experiences and certainly sparked my interest. 2006: 94) This approach is equally critical of the positivist approach.”(Neuman.5. This approach “emphasizes combating surface-level distortions.

my research aims to question the nature of reality with respect to ME/CFS. given my insider knowledge. 1997: 97-98): 1. More importantly. Banakar. paradigm that leads to emancipation and this is definitely a priority. the insider status of the researcher. FINISH OFF 5.1 An Exploratory Qualitative Study In adopting the final methodology. 2. 2006: 29-30) influence upon the research. the “contextual sensitivities associated with illness and disability” 4. research. it is not a priority for this 14 . (McMurray. consideration was given to ensuring the research has sufficient justification and rigor to fit within the realm of the “sociology of law” (Cotterrell. Conversely the critical paradigm aims to expose the myths of ME/CFS within the social framework in order to give empowerment to those that are dominated.(Sarantakos. 1992: 8. there were a number of considerations taken into account (Vickers. 2000: 273).6. Ontologically. exploited or oppressed by the current framework and societal beliefs about the condition.Proposal Draft – Methodology Section Geoffrey Hallmann well be a positive in opening up the type of data obtained. whilst I have already acknowledged this as a limitation and an there will come a time and a place for such an investigation. Methodological Choices 5. the objectives of the study. and that everyone has a different view arising out of their own construct.6. the participants and their rights 3. 1993: 106) It is a However. The interpretivist approach acknowledges that there is no single reality in social interactions. Without a suitable methodology for the project this objective may not be met.

2006: 14). Considering the Methodologies 5.2.Proposal Draft – Methodology Section Geoffrey Hallmann Qualitative research is inductive by nature. insufficient description of the research design or inadequate justification for the use of qualitative research strategies. Grounded Theory Originally developed by Glaser and Strauss (1967). The With both approaches firmly in mind I take to heart the warning of Dreher (1994) that problems can arise with the: “… inappropriate use of qualitative paradigms. 1994: 283) Forewarned is forearmed and this will be kept in mind throughout. there has been no venture into the sociology of law.2.2. With an open approach to methodology at hand.2. grounded theory is “a qualitative research method that uses a systematic set of procedures to develop and inductively derived theory about a phenomenon.6. 1990: 24) of data.1. or with a specific interest. it was essential to consider the various methodologies and their merits.” (Strauss. The process involves the collection. 5.6. themes and conceptual discovery beginning from the reality of lived experiences” (Vickers. The quantitative approach requires a narrow research question (Neuman. 2006: 23). or [the discovery of] patterns. as well verification and the building of a theory (Neuman. 5. There is contention as to the paradigm 15 . grounded theory allows the concepts to emerge from the systematic collection As the research progresses. thereby allowing the development of a “new theory.”(Dreher. analysis and interpretation of data. 2006: 14-15). Discarding Methodologies Whilst the “lived experiences” of people with ME/CFS may have been examined generally. 1997: 99). Where no theory has been developed. excessive reliance on verbal data. Quantitative research can be utilised effectively with qualitative research.6. “comparisons are made across social situations as part of theory building” (McMurray. inadequate plans for analysis.

Given that this research is an exploration of a phenomena and not a generation of theory from data. Despite this favour.2. 2003: 75). the regular participatory requirements of the may lead to a higher withdrawal rate if participants are too sick to participate. Action Research Action research is “applied research that treats knowledge as a form of power and abolishes the line between research and social action” (Neuman. involving the participants in the research process and focusing upon the goal of empowerment by raising consciousness or awareness (Neuman. on the other. 2006: 57) . educate the participants on how to put the new information into action. arguably showing signs of positivism and an interpretative perspective (Annells.6. First and foremost action research is too demanding upon a participant with ME/CFS (Morris. 1993: 68) Action research is more critical that interpretative in nature (Morris. 2006: 28). The approach is inherently political in nature. The approach requires the researcher to plan their approach. the culture of groups. action research should also be discarded as inappropriate for a number of reasons. then reflect upon the changes that result.3. Physical difficulties would be encountered due to the variable fluctuating nature of the ME/CFS illness experience. There 16 . and.Proposal Draft – Methodology Section Geoffrey Hallmann in which Grounded Theory falls. empowerment of the participants. the approach has been discounted as unsuitable. sounded this warning on this issue with respect to ME/CFS in rejecting action research: “The critical element of action research has relevance in this research however practical obstacles prevent the authentic adoption of this methodology.”(McTaggart. This process is repeated and the researcher and Whilst a powerful tool for Morris (2003) participants interact in a spiral of steps towards change. 5. 2003: 73). 2006: 28). both of which find favour within this research. on the one hand. The research requires an active participation from those with ME/CFS: “Participatory action research is concerned simultaneously with changing individuals. observe the actions. institutions and societies to which they belong.

”(Bentz. 2003: 75) My own ability to participate in action research is also an issue given my own fluctuations in health can Interestingly enough hermeneutical inquiry also possesses the “iterative” and “reflective” approach because of its openly dialogical nature: “… the returning to the object of inquiry again and again. 17 . 2006: 31).3. 1992: 1355 . For now. impact upon the ability to complete the work. 1994: 214) refers to the practice of mixing a number of qualitative approaches to complete the research. 5. action research is not a viable option.1. 1998: 110-111) Hermeneutics may well suffice without drawing upon action research. Far from accepted.6. the regularity of contact and collaborative nature of action research also places the research into jeopardy when I have the condition myself. reflecting back and forth to create the most powerful understanding. given the political nature of the condition…”(Morris. Method Slurring and Triangulation of Theory “Method slurring” (Baker. stories and models to amplify understanding … [U]sing the phenomenon. Despite these shortcomings. Choosing the Methodology 5. we improve the model. The critical appraisal element of action research is also important. Morris did not entirely dismiss every aspect of action research: “The iterative and reflective nature of action research (that is the practice of returning to participants for further comment and clarification) is a powerful research tool and this aspect is worthy of retention in this research.3.”(Morris.1360) or “muddling methods” (Stern. the approach has been soundly discouraged by critics.Proposal Draft – Methodology Section Geoffrey Hallmann could be a considerable rate of withdrawal as many may become too ill to participate in the on-going collaboration of the research project. each time with increased understanding and a more complete interpretative account … The hermeneutic route to understanding is through the iterative use of patterns.6. 2003: 75) Secondly. McMurray argues that “mixing the paradigms is problematic … it is not appropriate to mix in the methods of [another theorist]” (McMurray. metaphors.

skills. 1992: 115. or when interpreting the data” (Neuman.2.3. Neuman acknowledges that mixing can occur: “In practice. Triangulation is the observance of “something from different angles and viewpoints” (Neuman. Both the phenomenological or poststructuralist perspective were attractive to my research.6. Triangulation of theory “occurs when the researcher uses multiple perspectives in the planning stages of the research. According to Benner.”(Davis. both the interpretative and critical approaches were firmly in my thoughts. the goal of Heideggerian. not all critics believe that the purity of the paradigms is paramount. 2000: 192) The style of investigation to be undertaken is an analysis of the lived experiences of disease. Stone. practices and experiences.”(Neuman. Phenomenology As stated above. FINISH OFF 5. 2006: 149).Proposal Draft – Methodology Section Geoffrey Hallmann However. Davis says: “In disability studies it is asserted that disabled people should be considered experts of their own lives. 2006: 80) Often they mix elements from each. that those who do research with disabled people should allow people to play an active part in shaping the course of research projects. Yet. few social researchers agree with all parts of an approach. practices and embodied experiences. The ability to adopt both approaches may well be a solution given the ability to marry the interpretative approach to phenomenology and the critical approach to ethnography. needs and feeling. these approaches represent fundamental differences in outlook and This approach now finds justification in the concept of “triangulation”. hermeneutical phenomenology is to: “…understand everyday skills. 2006: 149). and therefore. illness and suffering (Barnes. and to find exemplars or paradigm cases that 18 . alternative assumptions about social science research. 1996: 699). to find commonalities in meanings.

1 Traditional Ethnography It 19 .3. Thus the combination of lived experience. (Mangan. 5.” (Betanzos. 1994: 56) Dilthey says of the hermeneutical understanding: “[W]e understand ourselves and others only because we introduce our own lived experience of life into every kind of expression of our own life and that of others.2. hermeneutical phenomenological approach it is asserted that the research will recognise the importance of both personal and sociological factors. expression.2. trivialized. Hence the human sciences are grounded in this connection of life. By adopting a Heideggerian. 1983: i-ii).6. 1999: 212. the primary objective of which is “the direct investigation and description of phenomena as experienced in life by using the practice of phenomenological reflection and writing to understand the forms of life” (Van der Zalm. This research will attempt to interpret it. This research will not merely describe the phenomena under review. holds the credentials required for my work. van Manen. and acknowledge the author’s own presuppositions and views of this phenomenon.6. or sentimentalized. 2004: 572) Hermaneutic-phenomenology holds both descriptive and interpretative elements. expression and understanding. Its use in the study of illness is well considered in the field of nursing (van Manen. 1994: 24) This approach also brings to its credentials the fact that it has successfully operated in law research to help interpret the reasons behind judgments or statutes.”(Brenner. 1983). Ethnography 5. including the authors own mind prior to entering the field. distorted.Proposal Draft – Methodology Section Geoffrey Hallmann embody the meanings of everyday practices … in such a way that they are not destroyed.3. and understanding is the specific process whereby mankind exists for us as an object of the human sciences. decontextualized.

1998: 1) In this respect. In ethnography. classify and interpret a particular cultural system or group’s way of life (McMurray. “A researcher may well be able to discover and articulate things about individuals and groups which they cannot see themselves as well as things which neither the participants or researcher can see at the outset of the study. Massey reveals ethnography’s suitability. stating: “Ethnographers stress that we move within social worlds. 2001: 108). and that to understand the behaviour. 2000: 11-13). with the ability to study. 1998: 2). values and meanings of any given individual (or group). the position as an insider is an advantage. Critical ethonography 20 .”(Massey. but it is not enough. 2006: 22).6. describe. ethnography provides a significant match. 5.2. With this at hand examining the interaction of participants with social institutions. 1998: 2) Ethnographers use their interaction with the participants to “discover and create analytical frameworks for understanding and portraying that which is under study” (Massey. ethnography balances attention to the sometimes minute everyday detail of individual lives with wider social structures.”(Massey. It offers the opportunity a more suitable methodology for this research. 1994).3. Ethnography immerses the researcher into the culture to investigate and interpret subjective meanings that are inherent.Proposal Draft – Methodology Section Geoffrey Hallmann Ethnography is one of the oldest forms of research (Brewer. the concept begins to break into smaller schools of thought (Denzin. The “narrative produced from this immersion reflects and embodies a hermeneutic understanding of the subjectivities of both the researcher and the researched”.2 Critical Ethnography At the eptisomological level of ethnography. hence it is ontologically interpretative in nature (Dey. we must take account of some kind of cultural context.

Denzin says of theory: “Theory should not be pursued for its own sake.”(Morris. not a goal in its own right.”(Crotty.” (Morris. 1989: 17) Critical ethnography offers the opportunity a more suitable methodology for this research. Formal theory is a means to a goal. argues: “… while critical inquiry will certainly be linked to action research. forces…. Critical ethnography is an amalgam expounded by Habermas. but as social theory … Habermas has focused upon the elements of social structure and culture which deny individual freedom through the elements of social structure and culture which deny individual freedome through the imposition of social control … According to Habermas the new social movements are not about economic or class-working conditions but ‘have to do with quality of life. nor will theory alone provide interpretations of the phenomena in question … Theory and propositions are of use only when they yield meaningful interpretations of the process under study. individual self-realisation. 2003: 82) Critical ethnography encompasses ethnography from a critical perspective. 2003: 80)(citations omitted) Morris argues that the theories of Habermas places an importance upon the “lived experience in relation to power structures and relationships within a broader social context. there was no real theory to be found what relates to the research question before this thesis. 1998: 12) It is critical ethnography. we can also draw an arrow from critical inquiry to ethnography … [Ethnography] is no longer a characteristically uncritical form of research that merely seeks to understand a culture. participation. Morris argues that: “Habermas is not as concerned with his critical theories being a methodology. and human rights’. equal rights.” (Denzin. with a view to changing that context to improve condition of the disadvantaged person.Proposal Draft – Methodology Section Geoffrey Hallmann In completing the literature review. a methodology that strives to unmask hegemony and address oppressive Crotty 21 .

2 The Term ME/CFS For the purposes of this research. 1992: 3) separate entity with a separate criterion. In doing so. Research Method 6. Internet websites.” (Morris.3. 6. It will also include Myalgia Fibromyalgia (FM) is a Encephalopathy and Post Viral Syndrome. including the newspaper. because it uncovers “information from those who are silenced” (Morris. Moreover. Applying Triangulation 6.Proposal Draft – Methodology Section Geoffrey Hallmann Morris argues that critical ethnography is a technique suited to ME/CFS.6. 5. invitations to local and other Medical Practitioners and word of mouth. I must “be mindful of [my] own involvement and how [my] outlook and attitude will affect the conclusion which will be drawn from the research.(Hyde. local radio. she concedes that in insider research into ME/CFS the researcher with the condition (as in my own research) “will avoid the problems of the outsider who endeavours to understand through their immersion in the research project”. but also assists in the emancipation of those involved in the research. It is classified by the WHO under ICD-10 M 79 (World Health Organisation. 1994: 119). 2003: 84) It is argued that these philosophical approaches to the research at hand is directed towards not only understanding the problem at hand. It will be noted that a great deal of the debate 22 .4.1 Source of the Participants Participants will be sought from advertising via a variety of media.1 Application of Method 6. 2003: 84). ME/CFS Society (around Australia). the term ME/CFS will be used as an acronym for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. on-campus newsletters and notice boards.

4 Selection of Participants It will be a requirement of the research that a participants carry out a self-diagnosis of ME/CFS in accordance with the criteria set out above. 1991: 119) and 2007 NICE Guidelines . and more prevalently in the 1980’s. It is not the intention of this paper to bring Fibromyalgia into the study. delusional disorder. The criteria necessitates that an exclusionary process be made before participants are considered as fulfilling the criteria of ME/CFS. It is also appropriate to note the 1991 Oxford UK definition (Sharpe.959) and this is the standard that has been used as the basis for the Australian definition. including a body mass index < 45 and no evidence of dependency upon social drugs. laboratory or imaging test that strongly suggests the presence of another existing condition. The criteria is: 1. 1994: 953 .3 Guidelines for Classification and Research In 1988. 2. the Centers for Disease Control (CDC). anorexia or bulimia. The existence of another existing condition.Proposal Draft – Methodology Section Geoffrey Hallmann and issues surrounding ME/CFS do crossover to FM. Participants will be requested to provide a form of disclosure and consent. in the USA developed a working definition(Holmes. Evidence of alcohol or other substance abuse. 4. 6. the standard was amended(Fukuda. 6. Such diagnosis shall have excluded all other medical conditions. Severe obesity as defined by a body mass index of greater than 45. or any unexplained physical examination finding. 1988: 387 . In 1994. 3. Participants will be asked to verify their diagnosis via correspondence or a telephone call. subject contact 23 .389) for CFS following the cluster outbreaks of the disease that emerged throughout the 20th Century. A past or current diagnosis of a major depressive disorder. or a disorder such as schizophrenia.

A group of ten to fifteen participants is envisaged. and reinstituted in the acquisition of quantitative data. using a semi-structured video taped interview with Email follow ups. and without the necessity to actual attend my office. Completion of a thorough literature search. 6. All material will be used for research purposes only.The third phase will involve the creation and distribution of a quantitative instrument to approximately 250 participants. 24 . Given Phase 3 . Due to the nature of ME/CFS. this will allow participants to attend to documents in the comfort of their own home. Facsimile or Email.Proposal Draft – Methodology Section Geoffrey Hallmann information and fill out a questionnaire. or indeed expend unnecessary health or energy to return the document. A pilot qualitative analysis of the data as to the lived experiences of participants and their interactions of with social institutions. 4. and all information stored in an individual’s folder will be house in a secure filing cabinet in the researcher’s office. Participants will be verified as genuine people with the condition through a formal process. Consideration of Triangulation of Method Triangulation of method allows for the “mixing of styles” (Neuman.5.will utilise a revised questionnaire in a semi-structured video taped interview with Email follow ups. Formulation of an appropriate survey methodology for acquiring data. qualitative data and quantitative data will be obtained in a sequential manner involving three phases: Phase 1 . Reformulation of a detailed survey instrument in light of the pilot study. 3. 6. 2006: 150).will be a pilot study of five to seven participants. Phase 2 . Plan of Research 1. In the current case. Questionnaires can be returned via surface mail.6. 2. Australia wide. The privacy of each patient will be paramount.

135).The survey will be arranged in such a way as to break up the specific topic areas into sections that can be discarded if not relevant. Specific instructions on how to use the survey instrument will be provided throughout in order to explain the kind of information desired. Some participants will experience certain legal implications in particular areas. 6. Data received and participant feedback will be used to refine the survey instrument (Dane.7. whereas others shall not. The participants will be introduced to the study and provided and explanation of what the study is about.126).The aim of the survey will is to be specific in the questions without compromising the data attained. Given the nature of the research is phenomenological. Reformulation of a detailed survey instrument for acquiring quantitative data. 7.Proposal Draft – Methodology Section Geoffrey Hallmann 5. 1990: 124). There will be common questions that are relevant to all issues and these shall be separated and placed in the front of the survey (Dane.Prior to the full-blown testing program. A qualitative and quantitative analysis of the outcome from referrals to existing structures within the legal framework. Where required. Instructions:. 1990: 125 . Privacy will be assured. 1. 1990: 125). 4. 3. how the results will be used and the importance of their contribution (Dane. Test Survey Format:. Protocol for Acquiring Data The protocol for acquiring data is broken down in to a number of requirements.Individual’s will be provided an information sheet to detail the research. illustrations of how to answer questions will be provided. 1990: 127. A quantitative analysis of the data surrounding experiences with the Legal Implications of ME/CFS – a format of which is derived from . Arrangement of Survey Items:. open-ended questions will be the most appropriate format 25 . Pre-testing Survey:. 6. it is appropriate to test the surveys on a small group of people. (Dane. 2.

A contingency plan of telephone follow-up will allow for surveys to be effective. negative side. 1990: 125 . with the answer to be recorded via video recording and questionnaire.126).126).Proposal Draft – Methodology Section Geoffrey Hallmann 5. Psychological Data Collection:. A self-administered survey reduces the amount of time the On the researcher is involved and enhances the privacy of the participant. Full Blown Survey:. there is an increased opportunity for misunderstanding and therefore unusable data. 1990: 125). 7. however be a requirement to answer certain questions using a range of possible responses or numerical data. collection and interpretation of the psychological data is outside of the expertise of the author. further themes and survey questions will be derived and placed into a more detailed instrument (Dane. However. Mixed-Method surveys are a valid method of data collection and can hold benefits. Facsimile and/or Mail. it would seem appropriate for the initial surveys to be conducted in person. I expect this to be distributed via Email. The aim of the survey will is to be specific in the questions without compromising the data attained. 1990: 188). There will.There are a variety of techniques that can be applied to administration and it is possible that there may be some cross over. From this review. assistance will be obtained from suitably qualified staff of the University (Dane. 1990: 125 . Method of Administering the Surveys:.The second round of surveys will be distributed as a very detailed Test Survey Format (Dane.Given the design. 26 . the sampling of the participants will continue “until theoretical saturation of each category is reached” (Strauss. 6. In the full blown survey. Given the methodology is grounded theory.

Protocol for Data Analysis The nature of the research hypothesis warrants three methods of data analysis – description. etc will occur. 7. Electronic data is protected through a password-protected laptop. 6. 1990: 51) For example data relating to age. 2. utilizing Australian residents and their experiences.8. association and elaboration. and other government agencies. Description – the nature of the data acquired will necessitate the description of information pertaining to categorical data.(Dane. Any disk upon which data is stored will be placed into the filing cabinet when not in the possession of the researcher. FINISH OFF Observations will therefore only exist within the boundaries of these disciplines. Delimitations The model for this research is multidisciplinary. especially when examining issues such as policy cancellation and disease duration. Insurance companies.9. the Australian legal system. Reference will be made to various social institutions such as the legislation. Elaboration – the need to explain causal relationships between data is necessary in this research.(Dane. This research data will come from within Australia. Association – the requirement to establish correlation between certain data findings is likely. incidence of certain issues.Proposal Draft – Methodology Section Geoffrey Hallmann 6. 1990: 138) The type of data acquired will include: 1. Welfare Services. 3. It involves interpretation through 27 . Protocol for Data Storage Physical data will be stored in a secure filing cabinet with key access only by the researcher.

reference to the overseas experience when looking for confirmation or guidance on issues. There will be. 28 . however.Proposal Draft – Methodology Section Geoffrey Hallmann This means that the findings will be focused upon the Australian experience.

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