Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries.

BACKGROUND: Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. METHODS/PRINCIPAL FINDINGS: This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4-6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. CONCLUSION: Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

A Multi-Directional and Agile Academic Knowledge Transfer Strategy for Healthcare Technology.

Technology, especially cognitive agents and robots, has significant potential to improve the healthcare system and patient care. However, innovation within academia seldomly finds its way into practice. At least in Germany, there is still a digitalization gap between academia and healthcare practice and little understanding of how healthcare facilities can successfully purchase, implement, and adopt new knowledge and technology. Therefore, the aim of this study is to develop a successful academic knowledge transfer strategy for healthcare technology. We conducted a qualitative study with academic staff working in higher education in Germany and professionals in their practice partner organizations. In 15 semi-structured interviews, we aimed to assess interviewees experiences with knowledge transfer, to identify perceived influencing factors, and to understand the key aspects of a successful knowledge transfer strategy. The Dynamic Knowledge Transfer Model by Wehn and Montalvo, 2018 was used for data analysis. Based on our findings, we suggest that a successful transfer strategy between academia and practice needs to be multi-directional and agile. Moreover, partners within the transfer need to be on equal terms about expected knowledge transfer project outcomes. Our proposed measures focus particularly on regular consultations and communication during and after the project proposal phase.

Dementia, Treatment Decisions, and the UN Convention on the Rights of Persons With Disabilities. A New Framework for Old Problems.

The UN Convention on the Rights of Persons with Disabilities has been at the center of considerable debate in the field of mental health. The discussion has caught up in particular after the publication of General Comment No. 1 in which the Committee on the Rights of Persons with Disabilities proposes a particularly radical interpretation of Article 12 of the Convention. Such a document has triggered skeptic and at times hostile reactions especially by psychiatrists, together with some positive comments. In this context, there is sometimes the tendency to focus only on the problematic aspects of the rights and support based model proposed by the CRPD and its Committee, forgetting that also "pre-CRPD" legislations on legal capacity present significant shortcomings. In this contribution I focus on the paradigmatic case of treatment decisions of people living with dementia with the aim to show how a number of provisions emerging from the CRPD and General Comment No. 1 can contribute to overcome the issues characterizing the traditional model of legal capacity and consent to treatment. First, I provide a brief overview of the provisions contained in the CRPD and General Comment No.1, summarizing the debate in this area. Then, I move to the case of treatment decisions of people living with dementia, analysing the main issues posed by the traditional model of capacity still characterizing European legislations. I will show how such problems and the solutions previously advanced by academics and practitioners resound in many ways with those identified by the CRPD and its Committee. In the second part, I analyse one by one the main provisions proposed by the CRPD and the Committee, studying how they can be applied in the area of treatment decisions of people living with dementia. In this context I point out the possible interpretations of the various provisions and their pros and cons, also referring to ongoing initiatives providing an insight on how such norms might work in practice.

Navigating complexity of child abuse through intuition and evidence-based guidelines: a mix-methods study among child and youth healthcare practitioners.

BACKGROUND: Dutch child and youth health care (CYHC) practitioners monitor and assess the well-being of children. One of their main concerns is identifying cases of child abuse, which is an arduous and sensitive task. In these contexts, CYHC-practitioners use both evidence-based guidelines aimed at increasing the quality of care through rationalised decision-making, and intuition. These two practices are seen as being at odds with each other, yet empirical research has shown that both are necessary in healthcare. This study aims to unravel how intuition is perceived and used by Dutch CYHC-practitioners when identifying and working with cases of child abuse, and how this relates to their evidence-based guidelines. METHODS: A sequential exploratory mixed-methods design: in-depth semi-structured interviews with CYHC-physicians focused on perceptions on intuition, which were followed by a survey amongst CYHC-practitioners on the recognition and use of the concept. RESULTS: The majority of CYHC-practitioners recognise and use intuition in their daily work, stating that it is necessary in their profession. CYHC-practitioners use intuition to 1) sense that something is 'off', 2) differentiate between 'normal' and 'abnormal', 3) assess risks, 4) weigh secondary information and 5) communicate with parents. At the same time, they warn of its dangers, as it may lead to 'tunnel vision' and false accusations. CONCLUSION: Intuition is experienced as an integral part of the work of CYHC-practitioners. It is understood as particularly useful in cases of child abuse, which are inherently complex, as signs and evidence of abuse are often hidden, subtle and unique in each case. CYHC-practitioners use intuition to manage and navigate this complexity. There is an opportunity for guidelines to support reflection and intuition as a 'good care' practice.