An ELPAT definition of the concept ‘Psychosocial’ in the context of Screening Living Organ Donors in Europe: A Concept Mapping approach

Introduction: Across Europe, transplant centers vary in the set of psychosocial screening criteria/guidelines used for the selection of eligible living donors. Our aim was to explore whether a common framework underlies this variation in screening criteria and, based on this framework, to develop a consensus on the essential elements of psychosocial screening of living liver and kidney donors. In order to do so, a research question was set out to define a conceptual framework of the concept ‘Psychosocial’ in the context of screening living organ donors in Europe. We formulated the following research question: Which psychosocial screening criteria are most commonly reported and considered as most important or effective in selecting eligible kidney and liver donors? Method: Concept mapping methodology was used to create a visual representation of the complex topic ‘Psychosocial’ in the context of screening living organ donors in Europe, in which underlying concepts, the relative importance of these concepts and the interplay between different concepts are organized. Initial psychosocial screening criteria (N=83) were derived from an extensive systematic literature review on guidelines, protocols and consensus statements on psychosocial screening practices, complemented by group brainstorm sessions. These criteria were then sorted and rated for their importance and effectiveness by 26 project participants. The data were analyzed using the Concept System Core© Software, which provided us with graphical depictions (concept maps) illustrating the view of project participants on these screening criteria. Pattern Matches and Go-Zones showed us the highlycommon, important and effective criteria. Results: The concept map procedure resulted in six clusters of psychosocial screening criteria: (1) Motivation and decision making (2) Personal resources (3) Psychopathology (4) Social resources (5) Ethical and Legal factors (6) Information and risk processing. Bivariate rating of these criteria revealed which important criteria are already frequently used for screening and which require more attention. Based on the cluster map and bivariate ratings we constructed a conceptual framework for non-medical risk factors that need to be considered when screening potential living organ donors. Conclusion: We provided a conceptual framework of psychosocial screening criteria which can serve as a practical recommendation for the psychosocial screening of potential living organ donors

“It Is Me Who Endures but My Family That Suffers”: Social Isolation as a Consequence of the Household Cost Burden of Buruli Ulcer Free of Charge Hospital Treatment

Despite free of charge biomedical treatment, the cost burden of Buruli ulcer disease (Bu) hospitalisation in Central Cameroon accounts for 25% of households' yearly earnings, surpassing the threshold of 10%, which is generally considered catastrophic for the household economy, and calling into question the sustainability of current Bu programmes. The high non-medical costs and productivity loss for Bu patients and their households make household involvement in the healing process unsustainable. 63% of households cease providing social and financial support for patients as a coping strategy, resulting in the patient's isolation at the hospital. Social isolation itself was cited by in-patients as the principal cause for abandonment of biomedical treatment. These findings demonstrate that further research and investment in Bu are urgently needed to evaluate new intervention strategies that are socially acceptable and appropriate in the local context

What Role Do Traditional Beliefs Play in Treatment Seeking and Delay for Buruli Ulcer Disease?–Insights from a Mixed Methods Study in Cameroon

Victims of Buruli ulcer disease (BUD) frequently report to specialized units at a late stage of the disease. This delay has been associated with local beliefs and a preference for traditional healing linked to a reportedly mystical origin of the disease. We assessed the role beliefs play in determining BUD sufferers' choice between traditional and biomedical treatments.Anthropological fieldwork was conducted in community and clinical settings in the region of Ayos and Akonolinga in Central Cameroon. The research design consisted of a mixed methods study, triangulating a qualitative strand based on ethnographic research and quantitative data obtained through a survey presented to all patients at the Ayos and Akonolinga hospitals (N = 79) at the time of study and in four endemic communities (N = 73) belonging to the hospitals' catchment area.The analysis of BUD sufferers' health-seeking behaviour showed extremely complex therapeutic itineraries, including various attempts and failures both in the biomedical and traditional fields. Contrary to expectations, nearly half of all hospital patients attributed their illness to mystical causes, while traditional healers admitted patients they perceived to be infected by natural causes. Moreover, both patients in hospitals and in communities often combined elements of both types of treatments. Ultimately, perceptions regarding the effectiveness of the treatment, the option for local treatment as a cost prevention strategy and the characteristics of the doctor-patient relationship were more determinant for treatment choice than beliefs.The ascription of delay and treatment choice to beliefs constitutes an over-simplification of BUD health-seeking behaviour and places the responsibility directly on the shoulders of BUD sufferers while potentially neglecting other structural elements. While more efficacious treatment in the biomedical sector is likely to reduce perceived mystical involvement in the disease, additional decentralization could constitute a key element to reduce delay and increase adherence to biomedical treatment

Self-esteem and illness self-concept in emerging adults with Type 1 diabetes: long-term associations with illness functioning.

This long-term prospective study examined whether illness self-concept (or the degree to which chronic illness becomes integrated in the self) mediated the pathway from self-esteem to problem areas in diabetes in emerging adults with Type 1 diabetes. Having a central illness self-concept (i.e. feeling overwhelmed by diabetes) was found to relate to lower self-esteem, and more treatment, food, emotional, and social support problems. Furthermore, path analyses indicated that self-esteem was negatively related to both levels and relative changes in these problem areas in diabetes over a period of 5 years. Illness self-concept fully mediated these associations