How can we research human suffering?

Health and suffering are key concepts in the scientific research of caring and nursing, and an interest in human or patient suffering and its alleviation is considered to be central to the understanding of health care. The body of research focusing on the phenomenon concerning suffering and its alleviation is fairly extensive in relation to health care and nursing. For example, Professor Katie Eriksson's work at Åbo Academy University and Professor Janice Morse's theory development at the University of Alberta continue to inspire researchers. Interesting findings also continue to contribute to the scientific corpus of knowledge regarding suffering as experienced by humans in a variety of contexts. In this issue of the Scandinavian Journal of Caring Sciences we are introduced to a discussion on suffering in relation to soldiers in war. In the article ‘Family suffering related to war experiences’ we draw attention to the importance of recognizing the perspective we put on a phenomenon or a situation. From a caring science perspective, suffering contributes to a person's natural ability to change through understanding of life and meaningfulness of his or her life. However, most research into war-related suffering among individuals and families has been medically, psychologically, sociologically or nursing oriented, where the central concept has mainly been post-traumatic stress disorder (PTSD). The new question raised is: what can caring science theories bring to the body of research on peoples’ health and suffering in regard to the demanding existential situation connected to war experiences? It may be a more natural and holistic or an ‘inside’ approach than the more commonly used PTSD. Acquiring knowledge of phenomena from an ‘outside’ approach depends on methods that make it possible to indicate the status of well-being or illness by observing, measuring and comparing the appearance of the phenomena. The knowledge and truth of suffering is already there ‘waiting’ to be understood from an inside perspective. Only by the narration of the suffering person is an entrance carved into the world of the suffering patient. The carer must acquire skills that make it possible for the other to discuss the suffering from an existential and spiritual perspective. A recreation of understanding of life can be achieved by an authentic encounter, in which words are searched for in communion with another person. This can be seen as a kind of hermeneutic dialogue. Interpreting the words of Isovaara, Arman and Rehnsfeldt, this means that the patient longs to describe his or her story of suffering to an authentic listener. Research methods for human suffering and alleviation of suffering are often qualitative and are based on interviews with people who are assumed to have experienced suffering. Examples of this include Professor Morse's research on burn victims and trauma units, Dr Öhlen's research into palliative domiciliary care and our own research on women with breast cancer. However, researchers and clinicians time and again ask, ‘How can we go about questioning people about suffering?’ By posing the question, do we not ‘awaken’ the interviewee's suffering? The questioner often further suggests that suffering is such a serious, deeply rooted or complex concept it should best be avoided, basing this judgement on the supposition that the person being interviewed will become painfully aware of his or her suffering, with a negative outcome for all concerned and a situation which the interviewer is not prepared to ‘deal with’. Based on experience of research, nursing and ethics we are of another viewpoint: people who are suffering long to talk about their perceived suffering. Being questioned about their suffering is a way for the person to find an opening to their own inner world and interpretations of what has been experienced. The research person is free to perceive suffering as having a contextual as well as existential significance. Many researchers maintain that, for patients, being able to relate their tales of suffering is an essential path towards its alleviation. A research interview is not an exception. When research subjects are aware that the interest is not therapeutic but for the benefit of the experience and narrative, they tend to relate their story with a sense of liberation. For the sufferer, it is a gift to gain a listening ear, and as interviewers/researchers, our experience shows that, first, people only open up or awaken as much suffering as they want to or can cope with, and secondly, sufferers are completely sensitive to the listeners’ ability to take in and assimilate the story. Our research shows that people suffer the most when they do not receive ample opportunity to share their suffering with others. They found it difficult to find people who ‘could cope with it’. We have called the phenomenon ‘doubled suffering’. In our view, the above queries arising amongst researchers of caring or nursing are a sign of how suffering has been culturally and socially suppressed as a phenomenon and experience. This may be interpreted in an understanding that the concept suffering has been replaced by, for example, PTSD, anxiety, pain, crisis or depression. We do not see this as being of benefit to suffering people; rather it is an obstacle to holistic care and to ethical research and nursing. If we ask the question ‘Should we awaken suffering or alleviate it?’ a paradox arises in that awakening suffering can be synonymous with alleviating it. Isovaara, Arman and Rehnsfeldt suggest that more research is needed from the ‘inside-approach’ in order to increase knowledge about the holistic world of the suffering patient and the appropriate placement in a clinical context.

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