Carina Werkander Harstäde

Next of kin's feelings of guilt and shame in end-of-life care

Abstract In this study the aim was to explore and describe next of kin’s feelings of guilt and shame in end-of-life care via secondary analysis of 47 qualitative interviews. In the analysis categories and subcategories emerged which conveyed how the next of kin experienced guilt; not having done or talked enough, being absent at important events or making errors of judgement. Categories conveying feelings of shame were situations where the next of kin felt inferior, was ashamed on behalf of the dying person and when family conflicts became apparent. Receiving help and support in order to make the remaining period as pleasant as possible can facilitate the next of kin’s sense of having fulfilled their duties and responsibilities and therein reduce feelings of guilt and shame. It is apparent that these feelings should be taken into account and the next of kin should receive support to increase their well-being during the remaining time in end-of-life care and the grieving period.

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.

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.

It was as Good as it Could be A Family Members Non-Experiences of Guiltand Shame in End-Of-Life Care

Objective: This study is part of a larger project, “Guilt and shame in end-of-life care – the next-of-kin’s perspective”. The aim was to explore and interpret a family member’s situation without feelings of guilt and shame and describe reasons for non-experiences of these feelings. Methods: An exploratory case study was employed to investigate and achieve an in-depth, in context understanding of the phenomenon from an informant directly involved in the activities being studied. The data material consisted of two in-depth interviews, analyzed in a hermeneutic way in accordance with Gadamer. Result: Seven subthemes appeared “The mother received good care with clear planning”, “They became aware of the inevitable death”, “The mother knew how she wanted things to be”, “Mutual understanding and care between mother and daughter”, “They could make the most of the time that was left”, “The family was together during the dying”, and “Both the daughter and her mother could handle and see meaning in the situation”. These subthemes resulted in a main theme: “There wasn’t much we could have done differently. It was as good as it could be”. Three interpretations emerged that can decrease the risk of feelings of guilt and shame: 1) knowing that the loved one is receiving professional care of good quality, 2) family awareness of the situation and trusting and supportive relationship with the professionals, and 3) inner and external resources and open communication with each other. Conclusion: The study shows the importance of professionals being involved in the family situation, having the courage to be sensitive towards the patient’s and the family member’s requests in situations where there is dying and death. Being aware of the suggested interpretations can decrease the risk of feelings of guilt and shame.

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.