4.0 Introduction
This chapter introduces the aims and purpose of this research and discusses why the qualitative method, using in-depth interviews, was chosen to explore the identified research problem. The chapter will detail how the research process was conducted including the process of recruiting participants, gaining access, and the challenges encountered during the recruitment phase. Ethical issues will also be discussed as will data collection, data analysis and the dissemination of the research findings to key parties.
The proposed study has the potential to increase organ and tissue donation from the Emergency Departments (EDs) by contributing to the understanding of the donation process and subsequently informing the most effective course of action to maximise consent for organ donation in this environment. In order to achieve this, one main group of the population has been the focus o f this study; they are the bereaved families who were approached for organ donation consent in the ED very soon after their relative had been admitted to the ED. At this time they may or may not have been informed by the medical or nursing staff that their relative would not survive. All of the participants in this study gave consent for their relatives to donate organs for the purpose of transplantation.
4.1 Aims and purpose of the study
This study has explored the bereavement experiences and perspectives of those bereaved donor families who were approached for organ donation in the ED for the purpose of transplantation. The main aim was to obtain in- depth perspectives of key family members particularly in relation to the timing of the approach to the family for organ donation consent, how it was done, by
whom and how this impacted on the on-going experiences of the family. An additional aim was to gain an understanding of the trajectory of organ donation from consent to the removal of organs, and how the situational and temporal context o f the ED influences the trajectory experienced by the bereaved families. A key aim of the study was to explain to what extent the experiences and needs of potential ED donor families are different from the needs of donor families in the Intensive Care Unit (ICU).
The overall purpose of this research is to develop a greater understanding of the needs of the bereaved family at the time of request for donation in the ED, and to explore the social and organisational factors that may or may not influence a bereaved family’s decision about whether or not to agree to organ donation. It is hoped to use the views and experiences of ED donor families to educate health care professionals on how the care given to donor families at the time of approach for organ donation in the ED can be improved.
4.2 Research Design: Why chose qualitative research?
The most appropriate research design to achieve the aims o f my study was qualitative research using in-depth interviews. Mason (1996) states that:
“Through qualitative research we can explore a wide array of dimensions of the social world, including the texture and weave of everyday life, the understandings, experiences and imaginings of our research participants, the ways that social processes, institutions, discourses or relationship works and the significance of the meanings they generate”
(Mason, 1996:1).
There were two main reasons for choosing qualitative methods were: Firstly, with this study there is no specific question to be answered and it required an exploratory approach for which qualitative methods are appropriate. Morse (1997) suggests that the qualitative method would enable a full and sensitive investigation of human and social processes derived from the participants’
world. Equally, I resonate with Pope and Mays (1995) who state that the objective of qualitative research is the “development of concepts which help us understand social phenomena in natural settings, giving due emphasis to the meanings, experiences and views of the participants” (1995:43). Taking
into consideration my study aims, a qualitative approach was the obvious choice.
It is important that the bereaved family is provided with the opportunity to tell their ‘story’ without influence from the researcher. My professional experience in working with bereaved families informs me that interviews can be therapeutic, in that family members have the opportunity to talk to people other than a close family member or are given ‘permission’ to speak about their experiences without feeling that they are imposing on the goodwill of others. Riches and Dawson (2000) saw a benefit for individuals to tell their story and to be listened to without criticism. Hynson (2006) reported from her research with bereaved parents that the use of in-depth qualitative interviews promoted parent empowerment through determining both the pace and content of interviews. Hynson (2006) also reported that the parents who took part in the interviews found that the research process was a positive experience.
The second reason was related to the difficulty of approaching bereaved families to take part in the study. One cannot stress too highly how much sensitivity must be applied when researching the experiences of bereaved families. Lee (1993) suggests that qualitative methodology is much more appropriate when researching sensitive topics. I would have felt uncomfortable adopting another method, such as a structured questionnaire, as this would have restricted the nature of information that is generated from an interviewee and I was concerned that the participant families may perceive a survey questionnaire as a cold and insensitive approach.
4.3 The qualitative interview
Qualitative interviewing was the most natural method to choose as I felt this would provide an appropriate basis to explore the experiences of the bereaved families in detail. The purpose of the qualitative interviews was to establish the normal or usual practice related to organ and tissue donation in the ED by drawing on the experiences of the bereaved families. Frey and Oishi (1995) define interviewing simply as a conversation with a purpose in
which one person, the interviewer asks prepared questions, and another person, the respondent answers the questions. Lofiand and Lofland (1984) state that an interview is a directed conversation, and that an intensive interview permits an in-depth exploration o f a particular topic with a person who has had relevant experiences (cited in Charmaz, 2006:25).
As Charmaz (2006:29) states “Qualitative interviewing provides an open- ended, in-depth exploration o f an aspect of life about which the interviewee has substantial experience, often combined with considerable insight”. She goes on to say how interviews can elicit views of the person's subjective world. When researching sensitive topics it is important that the researcher and the method chosen are both appropriate, that the interviews are flexible and that the researcher can follow new ideas and issues as they emerge.
Without adopting a flexible approach the interviews I undertook would have been far too staged and would have prevented the participants from really expressing themselves through their story.
Mason (1996) highlights that when choosing qualitative interviews the researcher holds an epistemological position which allows for a logical way to generate data through talking interactively with people, listening and asking them questions in order to gain an account of their experiences and analyse their use of language. Mason emphasises that the researcher must be aware of the epistemological implications of this approach and must be self-critical about how much the interviews can provide. Mason states that the interview method is heavily dependent on the participants' ability to “verbalise, interact, conceptualize and remember” (Mason, 1996:64).
Initially I anticipated adopting an unstructured approach when interviewing participants as I thought that this would provide the bereaved families with the opportunity to describe their experiences within their own frame of reference.
However, as Mason (1996:62) points out, it is difficult to have an entirely unstructured approach as no research interview can be “completely lacking in some form of structure”. I quickly realised this during my first pilot interview. I knew the participant well and soon realised it would have been more beneficial to have some kind of interview guide. The interview guide helped
me stay on track and was very useful if any uncomfortable silences developed.
I was always conscious of the importance that my interviews were conducted in a gentle manner and that I did not cross-exam ine the participant families, but rather explored their experiences. Charmaz (1991) states that interviewers who use in-depth interviewing should do so to explore and not to interrogate the research participants. My approach and the tone of my voice and body language were very much shaped by the rapport with each individual participant and I tried to ensure that my approach was flexible during all the interviews. I know that my experience o f working with bereaved families over the last 20 years afforded me the skills to do this
4.4 Brief overview of recruiting bereaved families for interview
In total 50 families were invited to participate in the study, and 20 families agreed. The bereaved donor family interviews took place between February 2008 and May 2011 and were drawn from four organ donation services regional areas within the UK. The organ donors died between 2005 and 2010.The 20 families interviewed comprised 28 participants, as some families had more than one family member present during the interview as detailed in Table 4.1.
Seven donor family interviews involved multiple participants; six interviews were with two family members and one with three family members. The remaining 13 interviews were with one family member.
All 20 interviews were face-to-face and audio taped with the consent of the families. Anonymity has been and will be maintained, no data has been recorded that could identify any bereaved family participants.