Online Resource 1, Methods
ICM reference: ICM-2010-00929
“Wait and see” as a communication strategy in end-of-life decisions in the intensive care unit: A qualitative study of family members’ experiences
Ranveig Lind1 RN, ICN, MSc* , Geir F Lorem PhD2**, Professor Per Nortvedt Rn, PhD3***, Olav Hevrøy MD PhD4****
1Intensive Care Unit, University Hospital of Northern Norway, Department of Care and Health Sciences, University of Tromsø, Norway, 2Department of Care and Health Sciences, University of Tromsø, Norway, 3Section for Medical Ethics, University of Oslo, Norway, 4Intensive Care Unit, Haukeland University Hospital, Bergen, Norway
*Corresponding author
E-mail: , Tel: [+47] 91184108, Fax: [+47] 77626192 Address for reprints: UNN HF, Intensiv, Opin-klin, Pb 6060, 9038 Tromsø, Norway
**E-mail: , Tel: [+47] 77646533
***E-mail:
****E-mail:
Method: Constructivist Grounded Theory
Grounded theory is an approach to data collection and analysis developed by Glaser and Strauss in the 1960s. The goal of grounded theory research is to develop theory from the data collected by the researcher [1]. In this approach the researcher is a restrained observer. A constructivist approach to grounded theory recognizes the interaction between researcher and participant. A fundamental question is: How do the participants construct, and act upon, their view of reality? In this approach, theories provide interpretive frames from which to view realities and a definition of theory emphasizes understanding rather than explanation. Interpretive theories give priority to showing patterns and connections rather than linear reasoning [2].
Method: Data Production
The interviews were held within 3-12 months after the patients’ death (average time 9 months). All interviews were conducted by one researcher (RL). The interviewer had previous experience of carrying out research interviews from her master thesis and had also taken university courses in qualitative methods focusing on interview techniques. A semi-structured interview guide was developed. The written information had informed the participants that the interviewer had extensive ICU clinical experience. This was repeated when the interview started. Because the selection of participants had been made by the local research coordinators, the interviewer was unaware of the relationships between the deceased patients and the participants. Thus using a single initial narrative-inducing question: “Can you tell me what happened?” an extensive narrative was elicited. This uninterrupted account varied in length from 10 to 25 minutes. The interviewer listened actively, giving non-verbal responses. The story was followed by a sub-session based upon the content of the first phase, reflecting the ordering of the themes presented by the interviewee. The participants were thus given the opportunity to emphasize what they found most important and express their own interpretation of meaning. The interview guide was used as a background tool to ensure that all relevant topics were covered in the dialogue. To some extent notes were taken to document non-verbal communication, pauses and other observations. Following each interview, the researcher wrote a reflection note as an interpretation of the interview situation. The 1-1.5 hour long interviews were recorded digitally and transcribed partly by the researcher (RL) and partly by a professional typist.
Method: Data Analysis
The interview situation represented the first stage of the analysis. Open-ended questions elicited the participants’ experiences. Where the preliminary interpretation was unclear, the participant was asked to give examples to expand on the theme. The interviewer’s experience as an ICU nurse provided a sound basis for a flowing conversation.
The interviews were analyzed immediately afterwards by two researchers (RL and GL), who used various approaches. In order to understand and learn more about the structure of the interview, a structural analysis was performed [3]. This drew attention to the contextualization of the narrative in time and space. The starting point was often the patient’s acute illness and subsequent admittance to an ICU. Such an analysis revealed that issues involving dissatisfaction or criticism of the staff or the system often occurred in the latter part of the narrative. A thematic analysis was also conducted, showing that issues connected to relationships with the clinicians and communication about the patient’s condition and decision-making processes were emphasized in all interviews. The participants’ everyday experiences and common sense understanding of communication and relationships appeared to be challenged in the face of the unfamiliar culture of an intensive care unit. The participants’ revelation of the patterns or framework underlying their understanding enhanced the researchers’ perception of what the experiences meant to the participants. This work was taken a step further through coding of the texts. In this process all four researchers participated. Writing memos was an important aspect of the initial coding and such memos helped to develop and focus the coding. The codes and data were compared with each other within a single interview and between interviews. It was then decided which initial codes made the most analytic sense in categorizing the data. The codes were at this stage discussed and refined by all four researchers. The next major selection stage was based on an investigation of the conditions forming the structure of the event or phenomenon under examination, whereby actions, interactions and their consequences were studied [4]. The interviews were divided into two groups based on the participants’ experiences of inclusion in the decision-making process on withholding or withdrawing treatment. Previously identified incidents or events were compared across groups, with the same questions as before, focusing on structure, actions, interactions and consequences.
Method: Research Ethics
The study was approved by the Regional Committee for Medical and Health Research Ethics, the Norwegian Social Science Data Services [NSD] and subsequently by the participating ICUs.
The approval authorized contacting potential participants 3-12 months after the loss of a close relative. The average time between death and interview was nine months. The researchers carefully considered the fact that it might be potentially offensive and intrusive during the grief period to make contact soon after the loss. Only one interview was carried out as early as three months after the death. This interview differs from the others in being a kind of "chaos interview", without any real beginning or end, where themes are embarked upon only to be set aside, replaced by new ones, and then returned to. The distance in time appears to have helped most participants to portray their experiences in a more orderly and reflective manner. It also seems that a strongly personal account of memories established itself and probably took shape precisely because the experiences strongly affected the participants emotionally. There were only a few occasions when the participants had to stop during the conversation because they could not remember what they wanted to talk about.
Since the interviews touched upon personal and emotional issues, the written information for the participants also contained the name and telephone number of a contact person from the ICU which had selected them for the study. If new questions, problems or a need for further follow-up arose from the interviews, the contact person would be able to put the participant in touch with the appropriate service.
Method: Additional limitations
This study is limited to the extent that the researchers may have been affected by pre-understanding during the data collection and analyses. All interviews were conducted by one researcher (RL). However, the research team is interdisciplinary with an experienced nursing researcher (PN), an ICU senior physician (OH) and a philosopher (GL). Their different theoretical and practical perspectives help to minimize the problem of prejudice.
The study is also limited to the extent that the participants had experiences that distinguished them from potential informants that were not interviewed.
References
1. Bryant A, Charmaz K (2007) The SAGE handbook of grounded theory. Calif.: Sage, Los Angeles
2. Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage, London
3.Riessman CK (2008) Narrative methods for the human sciences. Sage Publications, Los Angeles
4. Corbin JM, Strauss AL (2008) Basics of qualitative research: techniques and procedures for developing grounded theory. Calif.: Sage, Thousand Oaks
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