Åsa Roxberg

Out of the wave : The meaning of suffering and relief from suffering as described in autobiographies by survivors of the 2004 Indian Ocean tsunami

The aim of this study was to explore the meaning of suffering and relief from suffering as described in autobiographies by tourists who experienced the tsunami on 26 December 2004 and lost loved ones. A lifeworld approach, inspired by the French philosopher Merleau-Pontys phenomenology of perception, was chosen for the theoretical framework. This catastrophe totally changed the survivors’ world within a moment. In this new world, there were three main phases: the power of remaining focused, a life of despair, and the unbearable becoming bearable. Life turns into a matter of making the unbearable bearable. Such challenging experiences are discussed in terms of the philosophy of Weil, Jaspers, and Merleau-Ponty. The survivors of the tsunami catastrophe were facing a boundary situation and “le malheur,” the unthinkable misfortune. Even at this lowest level of misfortune, joy is possible to experience. This is part of the survivors’ ambivalent experiences of their lifeworld. In this world of the uttermost despair there are also rays of hope, joy, and new life possibilities.

Guilt and shame--a semantic concept analysis of two concepts related to palliative care.

BACKGROUND The theoretical viewpoint of the study was based on the fundamental motive in caring science, the suffering person and his/her health and life situation, which according to the philosophy of palliative care also includes the next of kin. The latter often wish to participate in the care of their loved ones and it is thus important for them to be able to make decisions that can generate a meaningful participation. Unfulfilled obligations or wrong decisions, concerning their dying relative, can result in experiences of guilt and shame in relation to the care of the loved one. A semantic concept analysis can provide a deeper understanding of these concepts and create a deeper insight into what the concepts mean for the individual. AIM The aim of the study was to elucidate the meaning of and the distinction between the concepts of guilt and shame. METHODS Semantic concept analysis based on Koort and Eriksson. FINDINGS The findings show that guilt and shame are two separate concepts. Guilt contains meaning dimensions of being the cause of and sin. Shame contains meaning dimensions of something that gives rise to shame and ability to experience shame. The synonyms for each concept do not overlap each other. CONCLUSION The semantic analysis creates an understanding of the concepts ontologically and provides a basis for theoretical, contextual and clinical understanding and development.

Being in transit and in transition The experience of time at the place, when living with severe incurable disease - a phenomenological study

The aim of this study is to describe the experience of time as it presents itself at the place being situated when living with severe incurable disease and receiving palliative care. The empirical data consist of 26 open-ended interviews with 23 patients receiving palliative care at home, at a palliative day care, in a palliative bed unit in hospital or in a nursing home in Norway. A common meaning of a shifting space for living emerged from the analysis and was revealed through three different aspects: (i) Transition from a predictable to an unpredictable time: To live with severe incurable disease marks a transition to a changed life involving an ongoing weakened and altered body with bothersome symptoms making experience of time different and unpredictable. (ii) Transition between a safe and unsafe time: When time is unpredictable, feeling safe is revealed as essential to how time is experienced at the place being situated. (iii) To be in transition from a homely to a homeless existence: In a time of increased bodily weakness, unpredictable ailments and displacements, the sense of belonging to the place is revealed as significant to the experience of time. Not knowing where to be in a time of change is like an existential cry of distress where the foothold in existence is lost. The findings are discussed and interpreted as an embodied experience originating from the passage of time continually affecting life sometimes so fundamentally that it marks a transition to a changed space of life that is reflected in the experience of time.

Entering a world with no future : A phenomenological study describing the embodied experience of time when living with severe incurable disease

This article presents findings from a phenomenological study exploring experience of time by patients living close to death. The empirical data consist of 26 open-ended interviews from 23 patients living with severe incurable disease receiving palliative care in Norway. Three aspects of experience of time were revealed as prominent: (i) Entering a world with no future; living close to death alters perception of and relationship to time. (ii) Listening to the rhythm of my body, not looking at the clock; embodied with severe illness, it is the body not the clock that structures and controls the activities of the day. (iii). Receiving time, taking time; being offered - not asked for - help is like receiving time that confirms humanity, in contrast to having to ask for help which is like taking others time and thereby revealing own helplessness. Experience of time close to death is discussed as an embodied experience of inner, contextual, relational dimensions in harmony and disharmony with the rhythm of nature, environment and others. Rhythms in harmony provide relief, while rhythms in disharmony confer weakness and limit time.

Feelings of guilt : Experiences of next-of-kin in end-of-life care

The aim of the study was to gain a greater understanding of the experiences of guilt of the next of kin in end-of-life care. Seventeen next of kin who had lost a loved one were interviewed with a focus on possible experiences of guilt. A Gadamerian-based hermeneutic approach to interpret these experiences was used. The interpretation showed that next of kin’s experiences of guilt emanated from a situation where the next of kin had a moral view on what was the right thing to do; it could also originate from a wish to do the best possible for the dying person out of love for this person. The situation could also involve both of these aspects. The way in which the situation was handled could, if the next of kin felt that he/she did not fulfill his/her commitments, have omitted or neglected the dying person or was the cause of something leads to experiences of guilt. The situation of being next of kin in end-of-life care is complex and demanding, something that health professionals are and should be aware of. Acknowledgement of experiences of guilt can help the next of kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next of kin through bereavement.

Where Can I Find Consolation? A Theoretical Analysis of the Meaning of Consolation as Experienced by Job in the Book of Job in the Hebrew Bible

The aim of the study was to explore the meaning of consolation as experienced by Job in the Book of Job and as presented in literature and how consolation relates to suffering and care. The study’s theoretical design applied Ricoeur’s view on phenomenology and hermeneutics. The resulting themes were as follows: consolation that is present, that originates in confrontation, that keeps suffering at a distance, that does not alleviate suffering, that originates in experience from giving comfort, and that facilitates a change of perspective. The authentic and caring consolation accepts the sufferer’s incomprehensible “otherness” but however provides no answers about how to console.

The Room as Metaphor: Next-of-Kin’s Experiences in End-of-Life Care

The “room” in end-of-life is a phenomenon that needs deeper understanding as it is a dimension that shows how health and suffering are shaped. Research on the concept of room was chosen as theoretical foundation in this study in order to reach a profound understanding of the next-of-kin’s “room” in end-of-life care. Lassenius’s hermeneutic interpretation in metaphorical language was used as an deductive-inductive approach to the empirical data. The data material comprised 33 interviews with next-of-kin about their experiences of end-of-life care when being close to a relative dying from a cancer disease. The analysis of the data formed four cases: the Standby, the Asylum, the Wall, and the Place. These cases lend their voices to the experiences of the next-of-kin in the study. The findings of this study explain and may well assist nurses to understand the experiences of being next-of-kin in end-of-life care as forming a room of rest from the suffering, a room of controlling the suffering, a room of hiding from the suffering, and a room of belonging.

Next of Kin's Experiences of Shame in End-of-Life Care

The aim of this study was to gain a greater understanding of the experiences of shame of next of kin in end-of-life care. Seventeen next of kin who had lost a family member were interviewed. A method inspired by Gadamer’s hermeneutic approach was used to interpret possible experiences of shame and to discuss these interpretations. The result showed that next of kin’s experiences of shame are linked to their perception of the remaining time and are guided by views on morality and what is right and wrong. Shame can occur when the next of kin are involved and actually cause harm to the family member as well as in situations that are beyond their control. Shame can also involve actions that have nothing to do with what they have actually done but is instead a shame that is placed on them by others, for example, health professionals or relatives. Shame is interpreted as experiences of ignominy, humiliation, and disgrace. Second-order shame is also found. It is important that health professionals are aware of these experiences of unhealthy shame when they meet and support next of kin in end-of-life care.