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  • The legal and ethical framework governing body donation in Europe – 2nd update on current practice

    Erich Brenner (4887040); Ronald L.A.W. Bleys (17810500); Raffaele de Caro (17810502); Ilia Catereniuc (17810504); Andy R M Chirculescu (16213361); Christophe Destrieux (4450471); Elisabeth Eppler (10913934); Luis Filgueira (58825); David Kachlik (17810506); Péter Kiss (14164844) (2024-02-13)
    Background: In 2008, members of the TEPARG provided first insights into the legal and ethical framework governing body donation in Europe. In 2012, a first update followed. This paper is now the second update on this topic and tries to extend the available information to many more European countries. Methods: For this second update, we have asked authors from all European countries to contribute their national perspectives. By this enquiry, we got many contributions compiled in this paper. When we did not get a personal contribution, one of us (EB) searched the internet for relevant information. Results: Perspectives on the legal and ethical framework governing body donation in Europe. Conclusions: We still see that a clear and rigorous legal framework is still unavailable in several countries. We found national regulations in 18 out of 39 countries; two others have at least federal laws. Several countries accept not only donated bodies but also utilise unclaimed bodies. These findings can guide policymakers in reviewing and updating existing laws and regulations related to body donation and anatomical studies.
  • Methodological challenges in quality of life research among Turkish and Moroccan ethnic minority cancer patients Translation recruitment and ethical issues

    TNO Kwaliteit van Leven; Hoopman, R.; Terwee, C.B.; Muller, M.J.; Öry, F.G.; Aaronson, N.K. (2009)
    The large population of first generation Turkish and Moroccan immigrants who moved to Western Europe in the 1960s and 1970s is now reaching an age at which the incidence of chronic diseases, including cancer, rises sharply. To date, little attention has been paid to the health-related quality of life (HRQOL) of these ethnic minority groups, primarily due to the paucity of well translated and validated measures, but also because of a range of methodological and logistical barriers. The primary objective of this paper is to describe the methodological challenges in conducting HRQOL research among these patient populations, based on experience gained in a project in which four widely used HRQOL questionnaires were translated into Turkish, Moroccan-Arabic and Tarifit, and administered to a sample of 90 Turkish and 79 Moroccan cancer patients in the Netherlands. Problems encountered in translating and administering the questionnaires included achieving semantic equivalence (use of loanwords), use of numerical rating scales, lengthy questions and response scales, and culturally sensitive and/or inappropriate questions. Privacy laws that prohibit hospitals from registering the ethnicity of patients hampered efficient identification of eligible patients. Recruiting patients to studies is often difficult due to low literacy levels, lack of familiarity with and distrust of research, concerns about immigration status, and inaccurate or missing contact information. This can lead to lower response rates than is the case with the population of Dutch cancer patients. Additional ethical issues that arise in such studies concern patients' problems with communicating with their health care providers, their lack of understanding of their diagnosis, treatment and prognosis, and the potential role conflict experienced by bilingual research assistants who may wish or be asked to intervene on the patients' behalf. Practical approaches to resolving these issues are presented.
  • Eettiset kysymykset tulevaisuuden terveyden edistämisessä

    Metropolia Ammattikorkeakoulu; Fiucci, Jenni (Metropolia Ammattikorkeakoulu, 2018-05-31)
    Tämän opinnäytetyön tarkoitus on kuvata, minkälaiset eettiset arvot ja näkökulmat sekä eettisen toiminnan kompetenssit korostuvat terveyden edistämisen asiantuntijoiden terveyden edistämisen tulevaisuutta koskevissa teemahaastatteluissa. Työn tilaaja on HPP- Health Promotion Programme- projekti, jonka tavoitteena on kehittää uusia terveyden edistämisen opetuskokonaisuuksia ammattikorkeakoulun opetukseen ja ammatilliseen opetukseen. Tavoitteena on tutkimuskysymykseen vastaten tuottaa tietoa, jota voidaan käyttää tulevaisuuden terveyden edistämisen opetuskokonaisuuksia suunniteltaessa.
 
 Tutkimusaineistona oli HPP-projektin teemahaastattelut, joissa asiantuntijat keskustelivat terveyden edistämisen tulevaisuudesta, sen ihannetilasta 10 vuoden kuluttua. Menetelmäksi valittiin deduktiivinen sisällönanalyysi ja aineiston analyysirungoksi CompHP-käsikirjan terveyden edistämisen eettiset arvot. Jokainen kahdestatoista eettisestä arvosta on monisisältöinen eikä yhtäkään arvoa voi kuvata yhdellä käsitteellä, vaan kyseessä on monimerkityksellinen arvoteema. Alkuperäisilmaisut luokiteltiin arvoteemojen mukaan, jonka jälkeen analyysia jatkettiin induktiivisen sisällönanalyysin periaatteita noudattaen.
 
 Terveys on ihmisoikeus ja terveyden edistämisen toiminnassa se tulee ymmärtää jokaisen yksilön tai ryhmän oikeudeksi terveyteen ja hyvinvointiin. Terveyden ja hyvinvoinnin puolestapuhuminen kaikilla julkishallinnon toimialoilla, toimijoiden saumaton, ylisektorillinen yhteistyö sekä yhteistyö kolmannen sektorin ja elinkeinoelämän kanssa on välttämätöntä hyvän ja eettisen terveyden edistämisen toteutumiseksi ja tavoitteiden saavuttamiseksi. Palvelujen kohdentaminen heikommassa väestönosassa oleviin, ennaltaehkäisevä ote, riittävä resursointi ja digitalisaation hyödyt ja haasteet korostuvat tämän päivän terveyden edistämisen toimintaa eettisestä näkökulmasta tarkasteltuna.
 
 Yksilön ja ryhmän arvon tunnustavaa asiakaslähtöistä ajattelu- ja toimintatapaa tulee vahvistaa terveyden edistämisen ammattilaisten toiminnassa. Asiakaslähtöinen ajattelu- ja toimintatapa toteutuvat vain, jos nähdään yksilö ja ryhmä toiminnan subjektina ja mahdollistetaan tietoisten päätösten tekeminen sekä itsensä toteuttaminen lähiympäristössään. Asiakaslähtöisen terveyden edistämisen tulisi perustua vahvaan tietopohjaan ja näyttöön perustuvaan toimintaan. Terveyteen ja hyvinvointiin vaikuttavan tiedon tehokas kerääminen, hyödyntäminen ja jako on tärkeää. Tiedon huomioiminen päätöksenteoissa kaikilla toimialoilla sekä terveyden ja hyvinvoinnin edistämisen tavoitteiden selkeä määrittely ja vaikutusten arviointi ovat osa hyvän ja eettisen terveyden edistämisen perustaa.
  • The Reasons for Informal Payments in Hospitals: A Qualitative Study in Iraq

    Ali Abdulhussain Fadhil; Atheer Khdyair Hamad; Sadeq Sahib Sadeq; Moayad Aziz Abdulqadir; Zahraa F. Hassan; Ali Abdul Razaq; Sada Ghalib Al- Musawi (Iran University of Medical Sciences, 2023-03-01)
    Introduction: The responsibility of health systems has evolved to encompass not only the improvement of individuals' health but also the protection of their financial well-being against the costs of illness. However, many healthcare systems worldwide have experienced the issue of informal payments, which is considered a significant challenge to the credibility of medical professionals. The reasons for these payments vary across different regions. To tackle this issue, the current research was carried out in 2021 to examine the factors contributing to unofficial payments within healthcare facilities situated in Erbil, Iraq. Methods: The present study utilized a qualitative, applied research approach, employing semi-structured interviews as the primary data collection method. The sample consisted of 60 patients, doctors, and policymakers from Erbil, Iraq, who were selected based on targeted criteria. Informed consent was obtained from all participants, and the study was conducted with the approval of the Medical Ethics Council of Hawler Medical University. During the interviews, participants were asked about their reasons for engaging in informal payments, and the collected data were analyzed using content analysis techniques. Results: Patients' perspectives on informal payments suggest that legal, cultural, and quality-related factors are influential in their decision to make such payments. On the other hand, doctors and policymakers revealed several reasons for receiving informal payments from healthcare providers, including structural, ethical, and tariff-related issues, as well as those that demonstrate the provider's expertise and competence. Conclusion: Understanding the reasons behind informal payments is crucial in addressing and ultimately eradicating them. This research has discovered the reasons behind unofficial payments in Iraq's healthcare system. An extensive grasp of the requirements and driving forces behind healthcare providers and recipients can efficiently identify and eradicate this practice. Policymakers who possess a thorough comprehension of the consequences associated with these payments can make more informed decisions, ensuring a collectively agreed-upon policy approach. Enhancing the wages of healthcare professionals in Iraq, taking into account their performance and expertise, and introducing payment systems that are tied to performance can play a crucial role in mitigating this issue. Additionally, promoting professional ethics training fosters trust and mutual understanding among individuals while highlighting the negative impacts of bribery.

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