Dr. Johansson I, PhD
Faculty of Health and Life Sciences, Linnaeus University, Växjö, Sweden
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This study used an exploratory design with a hermeneutic approach. The aim was to increase the understanding of the emotional responses of family members during the patient's critical care. Interviews from the main researcher's previous study about relatives of patients in an intensive care unit (ICU) were used. Two of these interviews were chosen, one with the mother and one with the father of an adult young patient, who became critically ill and admitted to a general ICU in south-west Sweden. The present study identified six feelings describing the emotional responses of the family members. The family members experienced feelings of uncertainty, feelings of abandonment, feelings of desertion from the loved one, feelings of being close to the deathbed, feelings of being in a no-man's-land and feelings of attachment. The experienced feelings described in this article can contribute to expanding healthcare professionals understanding of the family members' emotional responses during the patient's critical care.
critical care, emotional responses, family, feelings, hermeneutic, qualitative, secondary analysis
Critical illness and traumatic accidents occur suddenly and unexpectedly. The family of the sick patient receives no prior warning or opportunity to prepare them emotionally and usually has little or no experience of such a situation. The admission to the Intensive Care Unit (ICU) comes suddenly without warning, as a shock, and the high mortality associated with critical illness causes feelings of uncertainty (Eggenberger, 2007; Engström & Söderberg, 2004; Johansson, Fridlund & Hildingh, 2005; Keenan, Joseph, 2010) and a sense of unreality (Coulter, 1989). The situation throws the family system into disequilibrium (Olsen, 1970). Several stressors suddenly confront the relatives. These include role changes, disruption of routines, dependence on others for transportation, financial concerns, fear of loss of their next-of-kin, uncertain outcome, and possible emotional turmoil while their adult next-of-kin is hospitalised (Eggenberger, 2007).
Qualitative studies exist in the field of ICU-family members' experiences (Eggenberger, 2007; Engström & Söderberg, 2004). In the area of family members' emotional responses, qualitative studies also exist (Kleiber, Halm, Titler, Montgomery & Johnson, 1994), but none of them have explored the meaning of family members' emotional responses from a hermeneutic approach.
The aim of the study was to increase the understanding of the emotional responses of family members during the patient's critical care.
Design and Method
An exploratory design with a qualitative approach and a secondary analysis was used to explore what emotional responses family members of an adult young patient experience during an ICU-stay [Heaton, 1998, 2004). As the aim was to gain deeper understanding about the meaning of the family members' emotional responses, a hermeneutic analysis and interpretation were used [Gadamer, 1989].
The study included two family members, a mother and a father of the patient. The mother was an assistant nurse and the father a carpenter, both middle-aged. The family considered themselves as having good and loving relations, within the family and with other relatives. The patient was their 19-year-old daughter, who was studying and still living at home during her holidays. The patient was in the ICU because of a life-threatening pneumonia, and was successfully treated in the ICU for five weeks.
The head physicians and the Ethical Committee of the Medical Faculty, Lund University, Sweden, approved the study. Social worker of the clinical department was informed about the study so as to be prepared to support the family members if necessary. The family members were informed that participation in the study was on a voluntary basis, that they could withdraw from the study at any time and that all data would be treated confidentially. Informed and written consent was obtained before the interview.
This study used interviews from the main researcher's previous study about relatives of ICU-patients (Johansson, Hildingh, Fridlund, 2002). Two of these interviews were chosen, one with the mother and one with the father of an adult young patient, who became critically ill and admitted to an general ICU in south-west Sweden. The audio taped interviews took place at the hospital four weeks after the patient's discharge from the ICU. The following interview question was asked: "Please describe the situation you have gone through, when having your daughter in the ICU". The interviews lasted 51 respective 63 minutes and were transcribed verbatim.
The study used the philosophical hermeneutic of Gadamer (Gadamer, 1989), when analysing the interviews. This philosophy is based on the following preconceptions about human understanding. In the human language is the tradition and history of humans embedded. With aid of the language, humans are able to understand other humans. Humans then understand each other because of pre-understandings. In the process of understanding, the interpretations will always be circular as the interpreters bring their pasts with them into the future. When translating this philosophy into interpretation procedures of a text, it means that the interpreter use his pre-understanding when communicating with the text, and moreover, use the hermeneutic circular movements between parts and the whole. The final interpretation product is a fusion of the horizons of both the text and interpreter. Gadamer means this final interpretation to be the truth, but not the final truth for all time, rather the best possible at the moment and at least a more comprehensive interpretation than before, and one that is established by the tradition.
The first principle intends to gain a grand understanding of the wholeness of the text. The understanding of the wholeness is the start of the analysis, because the meaning of the whole will influence the understanding of all the parts of the text. The text was read through several times in order to get a spontaneous interpretation of what the text is saying.
The second principle intends to find the meaning of the text. This step deals with the horizon of the text. When researchers are interpreting a text, it is acknowledged that pre-understanding influence interpretation. However, the researchers/interpreters must constantly be aware of the magnitude of their pre-understanding, during the whole analysis, and also be aware of changes that will happen to their pre-understanding. In current study, the main-researcher, an ICU-nurse, had experiences of meeting family members at the bedside of critically ill patients. During this step of analysis every single sentence or paragraph was examined with openness to the text, to uncover its meaning for understanding the phenomenon.
The third principle intends to gain understanding of what the text mean for oneself as an interpreter. This step deals with the horizon of the interpreter. The analysis and interpretation in this step involved continuous dialectical movement between the horizon of the text and the horizon of the interpreter oneself. Movements between the parts and the whole were also proceeding through the analysis. As a final result of this step of the analysis, every sentence or paragraph had become related to the meaning of the whole text, and, in turn, the sense of the text as a whole had become expanded.
The fourth principle intends to find meaningful statements, which give understanding of family members' emotional responses when having an adult young critically ill in an ICU. This step involves a fusion between the horizon of the text and the horizon of the interpreter. In this final step of the analysis, every sentence or paragraph from the text was reviewed to analyse and interpret the data. This in order to interpret and understand from the two different horizons of meaning.
The study explored six feelings that give an understanding of the emotional responses of family members, a mother and a father, having an adult young admitted to critical care. Below are these feelings of the family members described.
Feelings of Uncertainty
These feelings give understanding to existential areas in the life of the mother and father of the patient. These involves questions weather the patient will survive or not and weather the patient will develop mental functional disabilities or not. More clearly expressed, the feelings deal with the threatening consequences to the life of the mother and father, about their "living survival" if the worst happen to their loved one. Following quotation describe the family members' feelings of uncertainty:
I saw how she looked like when she was admitted …I was so afraid, all the time when she got no oxygen [into the blood] … she was anaesthetised, and I also knew that during that day she took in very little oxygen, so one could not know how she would be … what have been damaged in her brain, and I asked over and over again the physicians, but they could not give any answer.
Feelings of Abandonment
These feelings involve experiences like having somebody forcing them away from their private area. The feelings were evoked when having no admittance to own family member or being left out as the addressee of information. Following quotation describe the mother and the father's feelings of abandonment when being prevented from being close to the patient:
Then I began to be afraid, the more afraid the longer the waiting, and I sat in the room for relatives quite alone…even if I knew that the assistant nurse came and told me that they hadn't forgotten me, I know that I experienced feelings of abandonment at that time.
Feelings of Desertion from the Loved One
These feelings express the mother and father's self-reproaches when not being able to fulfil their moral obligations to the patient; like having broken unwritten words that exist in the bounds of near relationships. The mother and father experienced themselves as leaving the patient in the hour of danger, when not having any power them to cure the patient. Following quotation describe a situation that provoked this feelings:
The only she [the patient] said, it was to the physician, 'Are you sure that I am not going to die?' …then she should have an intravenous catheter and they should also arrange with support for the breathing [and the relatives had to wait in the room for relatives] … then I nearly was panic-stricken, because I know I thought 'What are they doing?', and I who had promised my daughter that I should come to her again. She was conscious when she was admitted [to the ICU], and suddenly the physician came and told me that they had to anaesthetise her because of her need for mechanical ventilation … I didn't got the chance to say something to my daughter … and then not knowing if she will ever wake up again … I think that was dreadful, because I had promised her to came back to be with her, and when I saw her the next time it was impossible [to get contact].
Feelings of being close to the deathbed
These feelings give understanding to how the mother and father lived in an imaginary world with representation of the patient's forthcoming dead. The feelings are expressions of the mother and father's anticipation of the worst; that is the risk of loosing the loved one. Firstly, when real signs of recovery were shown, they dared to trust the message of survival. Following quotations describe the family members' feelings of being close to the deathbed:
The worst time was the weeks after the horse-kick in the face [warn of bad prognosis]. As a reaction of the information from the physicians, I [the father of the patient] saw pictures in my mind of death, funeral and of evil and sudden death, but after a day I tried to think of how to cope this situation. I couldn't imagine myself standing in the church, but as soon as I locked my eyes I saw relatives, my dead parents, coming up in my mind, I saw churches and flowers on coffins.
I [the mother of the patient] had also such strange pictures, but I saw the coming funeral of my daughter [the patient]. I saw how the procedures of the funeral should be.
Feelings of being in a no-man's-land
These feelings involve the mother and father's experiences of having the family thrown into disquilibrium. The everyday routines and responsibilities are disorganised and the bonds between the patients were in the risk to be broken because of the patient's life-threatening illness. The following quotation describes the mother and father's experiences of not having any place where being able to make themselves comfortable:
When we were here in ICU we longed for coming home, when we were home we longed for coming here. I mean, we were in the middle of the no-man's-land searching for consolation or in some way searching for a halt where to find a breathing room, because we were both of us totally overstrained and apprehensive. We had nowhere a place; we got no peace anywhere, irrespective of place.
Feelings of Attachment
These feelings are coming from the heart of the mother and father. The feelings express the mother and father's love to the patient and their wanting and longing for having the patient back into the usual closeness they have with each other. Their feelings were strong during the whole period in the ICU, but reached at maximum when the patient waked up after having been unconscious because of sedation regime during the mechanical ventilation. Following quotation describes a situation when the feelings of attachment were apparent:
I experienced it so nice [to be near the patient] … I wouldn't be able to leave her alone [in the ICU] … lastly, we went home around one o'clock in the night, but it was hardly one could. … The first weeks it was really a crises … and then it took so long time … one got such a terrible separation anxiety when it deals with one's children. I remember once when we were sitting on the balcony [together with the patient], it was when my daughter was going to be better, I could feel deep in my heart just as she was born again, as I had given birth to a child. It cannot be described in words. So I felt, she had been away from me for so long, and when she at last came back it felt like …
The study used older interviews from a previous study (Johansson, Hildingh & Fridlund, 2002). It was important to highlight the included emotional content that was considered to be relevant even after several passed years. The study explored six different feelings reflecting the emotional responses of family members having adult young critically ill in an ICU. The study of Kleiber et al. (Kleiber, Halm, Titler, Montgomery & Johnson, 1994) had the aim to describe the emotional responses of family members with the aid of a thematic analysis. When comparing its findings with those findings of the current study, it is apparent that a hermeneutic approach receives different quality of findings. The findings of the current study reflect an understanding of the meaning of the emotional responses of the family members, in accordance with the aim of the study. When discussing trustworthiness of the study, it is evident that the findings of the study are describing the world of the family members that is the world of a mother and a father. The findings exhibit their very private and from their heart coming feelings, which indicate a genuine and thorough text from which the findings aroused. The mother and the father's ability and willingness to share their experiences is the result of feeling confidence in the interview situation, which is in line with the intention of a good qualitative research interview (Kvale, 1996). The study also illustrates each of the shown feelings of the family members with a quotation, which may help the reader to evaluate the findings. Further, the sample chosen in this study included two Swedish family members with good and loving relations within their family. The findings of this study describe their emotional responses, in their kind of situation and with their history and tradition, and these findings are the best possible at the moment; a view of the findings that are in agreement with the hermeneutic of Gadamer (Gadamer, 1989).
Aspects of the Findings
The study explored six feelings that give an understanding of the emotional responses of family members, a mother and a father, having an adult young admitted to critical care. These feelings are: feelings of uncertainty, feelings of abandonment, feelings of desertion from the loved one, feelings of being close to the deathbed, feelings of being in a no-man's-land and feelings of attachment. The six feelings are describing extreme emotional responses that touch existential aspects as love and suffering. The provoking factor of the feelings was inevitably the life-threatening illness of the patient and the emotional bonds existing between the family members and the patient. This is in an agreement with the meaning of a family by Taylor (Taylor, 1994), who describes family as the sense of home within ourselves and which influences us to be with our loved ones when they are critically ill. Further, this sense of homeliness within ourselves allows us to look at another person and immediately experience the bonds we have with that person. It makes us to experience fear and anxiety, both for ourselves and for the other person being in a life-threatening situation. Thus, the feelings explored in this study are understandable, but have at yet no support in literature. However, the feelings of uncertainty are frequently supported in the literature (Coulter,1989; Eggenberger, 2007; Engström & Söderberg, 2004; Jamerson, Scheibmeir, Bott, Crighton & Hinton, 1996; Johansson, Fridlund & Hildingh, 2005; Keenan, Joseph, 2010; Koller, 1991; Rose, 1995; Sinuff, Giacomini, Shaw, Swinton & Cook, 2009), and the sense of "being with" that is transparent in the feelings, is described earlier by Walters (Walters, 1995) and Eggenberger (Eggenberger, 2007) as a phenomenon of being a member in a family.
The study explored six feelings that give an understanding of the emotional responses of family members, a mother and a father, having an adult young admitted to critical care. These feelings are: feelings of uncertainty, feelings of abandonment, feelings of desertion from the loved one, feelings of being close to the deathbed, feelings of being in a no-man's-land and feelings of attachment. The six feelings are describing extreme emotional responses that touch existential aspects as love and suffering. The provoking factor of the feelings was inevitably the life-threatening illness of the patient and the emotional bonds existing between the family members and the patient.
With regard to the findings it is essential to recommend that healthcare professionals reflect upon how they would like to be treated themselves in a similar situation. Furthermore, it would be of great interest to expand the sample in a repeated study.
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