Research focus: Organ donation and organ transplantation as well as person centredness and care in high tech environments i.e. peri anesthesia nursing, pre hospital emergency care, intensive care and transplantation

A prerequisite for transplantation is organ donation. My research interest is how the patient comprehends, experiences, perceives and copes with the situation and phenomenon of organ donation. Organs can be donated from either a live or a deceased donor. The intensive care unit is a highly technological environment and in some cases organ donation is enabled when a patient dies there. After the death of the potential donor the situation has to be considered in relation to the legislation about presumed consent, the situation for the next of kin, as well as the attitudes and organizational conditions within the unit. Living donation involves several complicated psychological, social, ethical and pedagogical issues.

My focus is also on the experiences and beliefs of the transplant recipients in relation to illness, disease and suffering, as well as their recovery and maintenance of health. The research questions are mainly based on a nursing perspective, investigating the patient’s interpretation of and reaction to her/his entire life situation rather than the disease itself. A variety of methods are used, including Content analysis, Hermeneutics, Grounded theory, Phenomenography, Phenomenology, the psychometrical development of instruments and various statistical methods.

When I began my PhD studies, transplantation was still a fairly new clinical area and research on health-related quality of life (HRQoL), lived experience and various nursing aspects was scarce. The first liver transplantation in Sweden was performed in 1982.

The primary goal was survival, at first from the operating room/theatre to the intensive care unit (ICU) and later from the ICU to the transplantation ward. It was hoped that the transplant recipient would be discharged from the hospital to continue her/his recovery at home. Along with improved results and a 5-year survival rate of > 70% questions were raised about whether or not these patients experienced HRQoL. New aspects were considered, such as consequences in daily life, coping strategies, as well as the prevalence and management of various symptoms.

My thesis involved four studies aimed at exploring HRQoL and coping in liver transplant recipients. The first two studies indicated that chronic pain was a major problem after organ transplantation, affecting daily life in patients with good graft function by limiting physical functioning, vitality and general health. A relationship was found between the number of rejections and pain intensity. The most common pain locations were the hands, feet and back and usually there were several pain locations. This was completely new knowledge about pain prevalence, magnitude and the consequences of pain in daily life. However, my studies were not designed to explore the causes behind the pain. A research group from Switzerland later described the Calcineurin Inhibitor Pain Syndrome (CIPS), where immunosuppressive medication most likely plays an important role in the pain problems of organ transplant recipients. My results together with the knowledge about CIPS have affected clinical decision-making regarding immunosuppressive therapy for organ transplant recipients with chronic pain.

The third qualitative study described the recovery process during the first year after liver transplantation and contributed new knowledge about how the recipients approached their donated organ, involving an altered perception of their bodies and the constant fear of graft rejection. The fourth prospective study reported on which coping strategies are the most common after liver transplantation and how these strategies change over time both individually and at group level. Besides my thesis, I published a study about liver transplant recipients’ experienced meaning of health and quality of life one year after transplantation.

After the public defence of my thesis in October 2001 my research widened to include organ donation, both from deceased and living donors. Organ donation (OD) is a prerequisite for transplantation and although some organs can be supplied by living donors (e.g. kidney and liver), the vast majority stem from deceased donors. The OD process starts in the ICU with the identification of a potential donor, followed by a discussion of the issue of OD with the family/next of kin. It concludes when the OD takes place or when the mechanical ventilation is withdrawn due to the absence of consent to OD. Thus, organ donation from a deceased person can only take place when the potential donor has received end-of-life care in the ICU and dies there. In order to better understand what kind of care is needed in the organ donation situation, several studies have been performed to investigate end-of-life care in the ICU.

The ICU-environment is demanding for the patients involved. There is an increasing trend in European/Scandinavian countries to use light sedation regimens or no sedation at all for patients on mechanical ventilation (MVT) as soon as their condition allows. This trend also concerns organ transplant recipients with a prolonged ICU stay after transplantation. In several studies we have explored what it means to be awake during MVT.

Nurses strive to provide holistic care for potential organ donors (PODs) and their grieving families. They may be the first professionals to establish a relationship with family members and to initiate the discussion about donation. According to the previous studies mentioned above, there is great suffering involved in this situation from the relatives’ perspective, which needs to be addressed and considered. However, nurses are well placed to identify a potential donor and to support the family regarding the question of OD. Nurses’ attitudes towards and beliefs about OD as a phenomenon may influence whether or not a potential OD actually takes place. In a literature review comprising 343 abstracts as well as 23 articles and theses, several factors were identified that explain why OD does not take place despite the (presumed) positive attitude of the deceased towards it. The single most important factor was the ICU staff members’ attitudes to OD, as the more positive their attitude, the greater were their efforts to ascertain whether there was consent for OD. These studies mainly focused on physicians and provided no information on how ICU nurses’ attitudes influenced the donation process. It is important to approach attitudes to brain death (BD) and OD from a national perspective due to the differing legislation in each country. However, as there were no existing instruments available, the aim was therefore to present data on Swedish ICU nurses’ attitudes to BD and OD and to develop and test a questionnaire designed to explore attitudes towards organ donor advocacy in terms of validity and reliability. Data from these studies were reported in every newspaper in Sweden in May 2011, as well as on various distinguished international websites.

The recruitment of living donors represents a medical and moral responsibility. Their motives are often complex and their need for support and individualized treatment inspired several studies about living kidney donation. One study about living parental liver donation suggested several clinical implications of vital importance for the care of the parental donor.

The perceived threat of the risk of graft rejection is prominent in the lives of organ transplant recipients (OTRs). Besides infection, graft rejection is viewed as the most common threat to OTRs. Previous studies indicate that fear of graft rejection might have a negative impact on the patients’ everyday life. Despite this, research on patients’ perceptions of experiences of graft rejection or the mere threat of it has been neglected. Although tremendous advances have been made in exploring the physiological mechanisms behind graft rejection and the biomedical treatment of the immunological processes that cause graft rejection, the perceptions and experiences of OTRs, as well as consequences such as HRQoL are still poorly understood. For example, how OTRs of various ages perceive the risk of graft rejection remains unclear. There was no validated domain specific instrument used to measure the perceived threat of the risk of graft rejection among OTRs receiving various types of solid organ. The different characteristics of the threat of graft rejection were also rarely described. The absence of systematic and structured measurements hampered the possibility to make any comparisons between groups of OTRs to evaluate the effects of various interventions. We therefore explored the characteristics of the experienced threat of the risk of graft rejection, psychological reactions and their consequences in daily life among OTRs.

In the course of the last two years one of my research groups has extensively explored the core of social adaptation after solid organ transplantation, resulting in three publications during 2015. A great and inspiring challenge is an ongoing, longitudinal and multicentre study covering Self-management after thoracic transplantation (The SMATT-study), which will continue until 2018 and provide much new knowledge regarding the need for self-management support among heart and lung recipients.