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This research raised the ethical issue of the rightness or wrongness of interviewing the parents who may have undergone considerable psychological trauma because of their child’s illness. Such situations could have involved psychologically disturbing and protracted disagreements between the parents, health care personnel and/or other family members. These issues, and related points, were raised in the reply to the submission of this research to the appropriate Human Ethics Committees (Chainey, 2001). Similarly, care was required when interviewing

doctors and nurses who themselves may well have faced difficult and disturbing situations when dealing with resisting parents, especially if the result was the death of a child. A great deal of care was taken to address all perceived ethical issues concerning this project. The main ethical issues arising from this project and the responses to those issues are now considered below.

Privacy Issues

The chosen city for the research operated several health care facilities, and the range of doctors and nurses that were working in the area of critical paediatric care was large enough to guarantee anonymity. Potential participants who conformed to the selection criteria were contacted and offered an invitation to participate in the research. Parental participants came from the greater city area, which included more than one million citizens. It was not the intention of the researcher to approach anyone who had already been subjected to unwelcome media attention unless that person (or persons) responded to the general request for research participants.

Informed Consent

The researcher explained the project to the participants who met the selection criteria for the study and had indicated interest following receipt of the letter of introduction. The information sheet outlining the project was then provided to all volunteers and time allocated to allow potential participants to decide whether or not to be interviewed for the research. This time varied between a few hours in some cases (some nurses and doctors) to many days or even weeks. A final explanation of the research was given at the place of work, or in any venue chosen by the participants. Only when all details had been fully understood did any participant sign the consent form and a date and time was set for the interview.

Confidentiality and use of results

All interview material was coded with pseudonyms instead of real names, and the code list stored separately from the coded material, which was kept on disk and protected by a password. Audiocassette tapes were kept in a locked cupboard. The transcriber of the tapes signed a confidentiality statement (Appendix 5). Transcripts were kept in a locked filing cabinet separate from the audio tapes. The researcher was responsible for the safe keeping of the texts. During the study, only the researcher, his transcribers and supervisors had access to all interview texts. The transcripts were submitted to be stored for five years minimum secure storage at Massey University. All participants were offered their audio tapes back after use, or the tapes were destroyed at their request. Participants were be given the opportunity to view and correct all transcripts of the interviews, and were invited to read the thesis upon completion. All participants had the option to withdraw from the study during the interview phase and have their contribution destroyed (in their presence if they so wish). Throughout the analysis and write up, submitted material was kept anonymous (see below).

Anonymity and other issues

The parental interviews were entirely voluntary, anonymous and carefully monitored at every stage. Along with doctors and nurses, parents were reminded to avoid any identifiable features – such as names or places - of individuals or institutions during the interviews, and if they did so inadvertently, the researcher carefully edited material by substituting a code letter or similar. The reproduction of unsubstantiated opinion from any source concerning specific cases that could be interpreted as acrimonious towards any individual or group of individuals was actively avoided in the thesis.

Every effort has been made in this thesis to avoid potentially sexist language or gender typecasting. However, to avoid the unnecessary repetition of the ungainly ‘he/she’ or ‘she/he’, and also because four out of five of the nurses interviewed were female and all of the physicians male, the common convention of ‘she’ is used to denote a nurse, and ‘he’ for a doctor.26 In the case of parents, there is less of a problem, and the correct pronoun is used.

Potential Harm to Participants

From the start of the study, it was realised that there was a potential risk of harm when delving into situations that may possibly disturb the emotional and psychological well being of the participant/s. This was particularly obvious in the case of any interviews with parents of young children who may have since died or remain seriously ill following the acceptance or refusal of medical treatment. After careful consideration of the notion of a more fieldwork/contextually based type of texts gathering, it was decided that specific observations of the interactions of parents and health care staff under considerable pressures and anxieties in the Paediatric Oncology area could be seen as both unnecessary and invasive. In light of the shift in the research proposal towards a broad exploration of discourses on the topic, and also when considering the need for further literature in the area, an interview based project was decided upon. With these problems in mind, the following actions were proposed to minimise the possible risks:

No parents were approached for interviews during the time of their stay within the hospital with their seriously ill child. All interviewees were given the opportunity to freely volunteer for the research through an entirely anonymous process. I was prepared to terminate an interview with any parent, nurse or doctor if, in my opinion, the participant was unacceptably distressed.

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Both words – ‘doctor’ or ‘physician’ are used interchangeably throughout this thesis to reflect not only common usage, but the mixed usage of the words by the interviewees as well.

Appropriate counselling services were to be offered to any of the interviewees if needed. These strategies were not required because no apparent distress was caused by the interviews.

Other risks

In regard to the possibility of the researcher gathering comments from health care personnel who have worked with the same child, it must be noted that this was not an intention of the study. In the interests of anonymity, no attempt was made by the researcher to establish whether or not the participant was talking about the same case as other participants. No material relating to an actual case was used in the thesis without the permission of the participant who provided the information. In the possibility of recognisable aspects of another individual being referred to by another participant, the general rule was one of caution when writing up the thesis.

The ultimate desire in doing this research was to seek ways to alleviate some of the pressures that fall upon parents and health professionals by exploring their roles in caring for seriously ill children - especially in those situations where there is a potential for disagreements and distress over a proposed medical treatment - so that a greater awareness and understanding of the issues may be developed. It was thought at the time that participation may serve to re- assure nurses, doctors and parents involved in the care of seriously ill children that an active interest is being taken in the difficult problems that they have, and continue, to face. In general, there may be widely acknowledged benefits in the form of a wider debate about the problems encountered by parents and health care personnel when faced with difficult and sometimes controversial choices concerning the fate of children receiving medical care in New Zealand.

Analysis of texts

An outline of the desirability of the chosen analytical method for this study was provided by Cheek (2000) and Rolfe (2001) who provided initial ideas concerning the intellectual and intuitive “journey of exploration and discovery” (Cheek, 2000, p. 133) that was required to achieve the aims of this research. Fairclough’s (1995) broad three-dimensional framework for studying discourse, “where the aim is to map three separate forms of analysis onto one another” (p.2) was also employed. This framework was a) analysis of (spoken or written) language texts, b) analysis of discourse practice (processes of text production, distribution and consumption) and c) analysis of discursive events as instances of sociocultural practice. This enabled the use of the written material employed in the thesis, and supported the notion of “language as a form of social practice” (Fairclough, 1989, p.20), that was emerging as a key element in the texts collected for the research. According to Parker (1992), “discourses do not simply describe the social world, but categorise it, they bring phenomena into sight… [they] provide frameworks for debating the value of one way of talking about reality over other ways” (pp. 4-5); Parker’s four main stages of discourse analysis were used as a guide for the organisation and analysis of the research material. The four stages are:

Introduction: The study is positioned with respect to its relationship with other substantive works drawn from a ‘traditional’ search of literature. Other discursive studies may be included in this composition. Also, the types of texts to be analysed and the types of questions and issues that drive the research are discussed to supply a contextual basis for the research

Methodology: Detail is given about specific texts to be analysed, i.e. why these texts were chosen, why other texts were dismissed, and how these texts were obtained.

Analysis: Texts are examined using intuition, particular attention being paid to the absence of possible discursive frames and other emerging themes.

Discussion: The analyses are linked to other material in the area in order to draw out points for consideration of the substantive area under consideration. This stage involves reflection on the issues raised by the method, including the position of the researcher.

The works of Fairclough and Parker framed the analytical process; however a set of theories that would assist with analysis of the texts was needed. As the topic dealt largely with resistance, a decision was made to use selected Foucaultian methods and ideas, especially those relating to the uses of power, control and discipline. As material was collected for the thesis, it was decided to explore the contextual socio-political elements by using a selection of Bourdieu’s main ideas about capital, habitus and field. A final layer of analysis and inspiration came from additional theoretical sources that offered context specific ideas for the substantive chapters in the thesis.

These additional sources were, in order of appearance in the thesis:

Chapter Four: Lupton (1994a, 1994b, 1995, 1999) and Lupton & McLean (1998), whose work in the field of media analysis and its relationship to medicine, illness and disease, helped to uncover ‘latent’ or ‘sub textual’ discourses.

Chapter Five: Stychin (1995), whose analysis of the discursive elements and resistance towards homosexuality in law lended itself well to a similar analysis and deconstruction of the law’s position regarding radically resisting parents.

Chapter Six: Young, Dixon-Woods and Heney (2002), and Young, Dixon-Woods, Findlay and Heney (2002a), and to a lesser extent of Dixon-Woods, Young and Heney (2003; 2005) provided works on cultural discourses relating to children, parenting, caring, and cancer or chronic illness. Their ideas assisted with the analytical framing of the texts concerning parents’ responses to medical interventions on their children.

Chapter Seven: Lupton’s (1994a; 1996; 1997) work on the cultural aspects of medicine provided theoretical framing for an analysis of the texts gathered from doctors interviewed for the research.

Chapter Eight: Bishop and Scudder (1990, 1991, 1996), whose ideas on nursing’s ‘in- betweeness’ were used in an analysis of the interviewed nurses’ responses to parental resistance.

All were used in conjunction with the selected ideas of Foucault and Bourdieu, which informed every chapter.

When examining texts, the process was mainly one of intuition and theoretical application, where the main analytical structures were selected from a variety of sources supported by key ideas taken from Foucault and Bourdieu. As an analogy, the analysis was supported with key Foucaultian and Bourdieusian ideas providing a type of philosophical and sociological ‘weave and weft’ effect, the chosen additional contributors providing the discursive ‘pattern of the fabric’, and the interviews and other texts providing the raw material for the ‘fabric.’ Finally, the process was completed after a great deal of constructing, deconstructing and reconstructing (rewriting) of the discursive material.

Consistency and credibility issues

The thesis employs philosophical ideas and approaches to research that are supported by the works of Foucault, Bourdieu and other significant contributors from a mainly post-structuralist pool. It therefore does not necessarily purport to claim “any aspect of reality in its entirety, speak for others, make truth claims, and attain universal essential understandings” (Cheek, 1999, p. 384). On the contrary, it seeks only to present, through an examination of several different and often conflicting ‘texts’, a multiple and varied cultural representation of parents who resist medical treatment for their child that pays attention to multiple realities and interpretations of discourses and practices within the field. In such a qualitative thesis, the credibility of the results depends largely on consistency with established literature and themes across the interviews, and the experiences of the researcher as a nurse and an expert in the field (Thurmond, 2001).

To ascertain whether or not such consistency has been achieved, central ideas and themes of the thesis have been presented to different gatherings of parents, doctors, nurses and academics (Woods, 2002, 2003, 2005, 2006a, 2006b) in the last few years; on each occasion, these ideas and themes have been accepted by those groups as being a credible account of the topic. According to Cheek (2000), reflexivity brings into scrutiny not only the research field itself, but also to how the field is represented by the researcher in the research text. The researcher chooses, positions and constructs the field, while the field simultaneously positions and constructs the researcher. According to Jacobson & Jacques (1997), the use of such a perspective is an attempt to “become more reflexive about the ways that situated knowers and knowns influence the production of inevitably perspective-dependent knowledge” (p.56). This thesis is therefore a constructed account that brings together the stories of the research participants with media, legal and academic texts about parents who resist proposed medical treatment for their seriously ill children.

Summary

This chapter has considered the philosophical background to the chosen methodology and method for this thesis on parental resistance. It has been shown that this background has emerged from poststructuralist thinking in the second half of the twentieth century, and in particular from the ideas of both Foucault and Bourdieu. It has also been shown why in this thesis selected main ideas from both of these particular social theorists have been utilised. Furthermore, it has also been maintained that it is the combined strengths of the analytical ideas of both theorists that strengthens and supports the thesis, including the strength that is obtainable from merging the approaches to research of both.

The chapter also discussed issues relating to methodology and method to illustrate the processes undertaken to provide a poststructuralist thesis that is both robust and flexible. In particular, it has been shown that the methods used to realise the research aim were the result of a gradual and sometimes serendipitous process. A detailed and thorough examination of the ever emerging issues involved in performing the research for the study has also been offered. It is maintained that from the overview of the design of the study, to its procedures, to the method of analysis, there is a very carefully considered methodological underpinning for this thesis that is both consistent and reliable.