Ethical committee approval and use of information
The ethics approval period lasted about a year. The study was examined and approved by Massey University Human Ethics Committee and the Auckland Human Ethics Committee. It was also slightly modified three times, the modifications being largely involved in making sure that the Information Sheet would be fully understood by all participants. The Information sheet for parents was therefore different in detail from the one used for doctors and nurses (see Appendices 2 & 3). Anonymity and confidentiality were guaranteed. This thesis has been prepared from the completed research. Throughout the research period, academic papers, journal articles and conference material was produced, and it is expected that similar activities will continue after the thesis is released. All research participants have been offered a written report of the study, and have been invited to view the finished thesis. It is anticipated that advisory notes, guidelines, protocols or standards for medical and nursing staff may result from this study.
Following ethics approval semi-structured, conversational interviews were conducted with parents, doctors and nurses, and themes relating to parental resistance were explored. Themes central to the aims of the research that I was interested in pursuing included:
• The impact of critical situations on the parents of young children and on the health care staff.
• The experiences and views of parents in the determination of their own child’s medical treatment.
• Perceptions about the limits of patient/parent/guardian self-determination in health care institutions.
• Talk concerning the threshold for the engagement by medical staff in paternal activities that include legal actions.
• Consideration of the consequences of health care disputes that lead to parental resistance when seriously ill young children are involved.
All interviews conducted for the purposes of this research included discussion of disputed treatment decisions under difficult circumstances. These circumstances included:
• A seriously ill child (between the ages of approximately 1-7 years preferred24). • A proposal or actual medical treatment in response to the illness of the child. • Doctors’ perspectives on parental resistance to such proposals.
• Nurses’ perspectives on parental resistance to such proposals.
• Parents’ perspectives on their responsibilities of care, especially those elements where they disagreed in some way with the proposed treatment of their child.
Procedures for recruiting participants and obtaining informed consent
As previously noted, it was necessary for the credibility of the research to examine a range of publicly sourced texts, but also individualised and personal interview material as well. Interviewed participants included five nurses, five doctors and five parents. One other interview, representative of a legal or State perspective was given by the Health and Disabilities Commissioner of New Zealand. The initial groups (i.e. parents, physicians and nurses) were chosen to ensure that a diversity of perspectives was presented, and considerable effort went into distributing a letter of introduction (Appendix 1) and finding suitable participants. The people interviewed for the thesis provided a ‘purposive sample’ (Coyne, 1997) of those involved in the field of study. The criteria for inclusion was a minimum of two years experience in the area of paediatric oncology for doctors and nurses (later changed to paediatric medicine or nursing), and experience of caring of a seriously ill child (an age range of 1-13 years was accepted) for parental involvement (Appendix 2 or 3). Each interview varied in actual length, some lasting about an hour, others two hours. Overall, the shorter interviews were obtained from physicians, the longer ones from parents.
Doctors and nurses were recruited by the distribution of the letter of introduction within their place of work. Originally the staff of a specialised Paediatric Unit within a large city hospital was selected for this task, but later because of difficulties recruiting volunteers, staff from another large Paediatric Unit within a second large hospital in the same city was invited to participate.25 After volunteering to be interviewed members of both groups received the appropriate information sheet. Parents were recruited through the use of a number of agencies
24 This enabled the research to concentrate upon the issue of parental decision making rather than the even more
convoluted issue of ‘child-parent’ decision making. This is not to say, however, that this issue was entirely ignored in this thesis.
25
This is because the first request for nurse participants at one particular hospital was fruitless. It has since been suggested that at least one important reason for this was a recent incident at the unit involving a seriously ill child and issues with his/her parents that was still painfully fresh in the minds of the nurses.
such as local community and hospital based support agencies that provided them with the letter of introduction; and they then volunteered after receipt of the information sheet. All participants signed a consent form after reading the Information Sheet and having the details of the study explained to their satisfaction (Appendix 4).
Finding participants
Material for analysis from interviews with parents, doctors and nurses was collated over several weeks and in three distinct stages between 2001 and 2003. The interviews were arranged only after a period of considerable difficulty in actually recruiting enough volunteers to be interviewed. Early attempts in the first stage tended to stall quickly. A visit to a specialised Paediatric Unit in Auckland to hand out letters of introduction and information sheets to medical and nursing staff and discuss the research with them as required yielded no immediate response and only later, one interview (a physician). No nurses on the visited unit wished to be interviewed, although one (who no longer actually worked there) did initially volunteer, but then later withdrew. The reticence of the nurses to be interviewed was a surprise at the time, but on reflection, it is likely that background pressures and recent ‘in-house’ difficulties (see footnote) were too great a distraction for them. A possible interview with a parent resulted in a visit to an empty house, and another turned out to be a useful mistake, ending up as an informal two hour lecture on the evils of modern medicine from a couple deeply committed to alternative medicine and health practices. It must be said, however, that this interview was influential in formulating an early idea that perhaps the parameters of the research were too limiting. This later proved to be the case. I therefore remain grateful to this couple for their input, however informal at the time.
A second attempt to recruit participants in the same city in 2002 yielded better results. By this time, local assistance from nursing colleagues and a community agency for parents to distribute the letters of introduction had been offered and gratefully accepted. This yielded about a third of the final number of interviews, one parent, three nurses, and one physician). Even though the introductory letters and information sheets were widely distributed, the numbers of potential interviewees was still insufficient. In light of this, members of another Paediatric Unit at another hospital in the selected area were given introductory letters via the help of a small group of interested medical and nursing administrative staff. The response here was much better, and seven interviews followed, five nurses, one doctor and one parent. There was now, finally, a viable amount of interview material to analyse. Following a few phone calls and e mails, a fourth and final attempt at recruiting in the city a few months later yielded the remaining participants (a total of five parents, five nurses, and five doctors).
Contextual and procedural elements
The interviews with physicians seemed to be the least tension free for myself as the interviewer, followed by the parent interviews, and ending up with largely very relaxed interviews with nurses. Most of the interviews with the physicians were ‘slotted in’ between one situation and another in their ‘busy days’, and nearly all were within their place of work, usually in their own office. The nursing interviews were often carried out on the nurse’s day off, at her or his home, and over several cups of tea or coffee. Parental interviews were carried out in a place of their choosing, and varied from at home, at work, or even on one occasion, in a hospital side room. The tensions that I experienced at the interviews are quite likely unsurprising, particularly in light of differences in habitus and field (Bourdieu, 1984). That is, the nurses knew that I was ‘one of their own’, as we shared a common language and general background in a relaxed atmosphere; the physicians knew that I wasn’t ‘one of their own’, and were generally ‘pressed for time’ within what was mainly in their chosen context, i.e. at work; and the parents were probably unsure about whether or not they really wanted to recall in depth what, for most of them, was a very painful experience. Subsequently, the parental interviews, wherever they were held, all tended to carry a high emotional charge for both interviewer and the interviewee.
The questions asked followed a semi-structured format, generally guided by the preliminary questions. Separate information sheets containing examples of these questions were developed for parents and health professionals (for full details, please refer to Appendices 4 or 5). Questions were also adapted during the interviews as participant needs were considered.
For parents or guardians the general approach to questions asked included the following: • “Tell me about your child’s illness. How was it identified and what happened?” • “When your child was seriously ill, do you remember an incident that, in your mind,
marked a major turning point in the treatment of your child?”
• “Can you recall your input at that point in ways of decision making and negotiating with the medical staff about your child’s proposed treatment?”
• “In regard to this research, do you recall any areas that you either agreed or disagreed with the proposed treatment for your child?”
• “What, if any, do you think were the moral or ethical aspects of the situation that you have described?”
• “How did you decide which course of action would be appropriate in your response to this incident?”
For doctors and nurses, the preliminary questions asked at interview included the following: • “In your work with seriously ill children and their parents, do you remember any
general situations that marked a major change in the overall approach towards decision making of the health care team involving parents and/or their children?”
• “Can you recall your input in ways of difficult decision making and negotiating with parents/guardians about proposed treatments for children?”
• “In regard to this research, i.e. cases of treatment option disagreements between medical staff and parents/guardians, do you recall any general situations that you either agreed or disagreed with the parents over the proposed treatment of children?”
• “What, if any, do you think were the moral or ethical aspects of the general situations that you have described?”
• “How would you decide which courses of action would be appropriate in your overall responsiveness to disagreements between medical staff and parents/guardians?”
The above questions provided a framework for the interviews, many of them expanded considerably into other reflections and ideas that extended well beyond the basic set of questions. In all, the interviews provided information from which to develop conceptual ideas in the thesis, and to provide an insight into the experiences of parents, doctors and nurses in disputes involving the treatment of critically ill children.
Transcription
Two typists transcribed the recorded cassette tapes verbatim and produced a preliminary transcript; each tape was then played back with the transcript before me and corrected as required. Both transcribers complained that “doctors (and a few of the nurses) seem to use a different language from the rest of us” (or words to that effect), but they liked transcribing the parents’ tapes because they could understand them more easily. Throughout the period of transcribing and checking, I was grateful for Silverman’s (1993) observation that discourse analysis does not require quite the same precision in transcriptions that alternative forms of analysis, such as conversational analysis, seem to need. Pitch changes, emotional emphasis and pauses were not well represented in the transcripts; a problem that may never be fully resolved in such research. Changes were made to the transcribed material where particulars that may identify or indicate persons or places were noted. In all cases, such entries were disguised by replacing such items with single letters or similar codes. What resulted was a representative account of every interview, even if a few passages were difficult to follow or emotionally demanding.