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Background: Caregiving experiences in rare diseases (RDs) vary based on factors such as specific clinical entity, disease severity, the child's age, and available support and resources, leading to challenges that significantly impact caregivers' lives. This study investigates whether caregivers of children with different RDs encounter varied aspects of care. Methods: This study was conducted as a self-administered, anonymous, computer-assisted online survey, focusing on the challenges of caregiving for children with RDs. Questions covered aspects such as information availability on RDs, diagnostic processes, modern treatment accessibility, family physicians and specialists, the impact of caregiving on personal life, family dynamics, and financial challenges. To achieve our study objectives, we categorized caregivers of children with RDs into two groups to compare various aspects of caregiving: caregivers of children with phenylketonuria (PKU) (n = 175) and those caring for children with life-limiting rare diseases (LLRD) (n = 226). Results: Caregivers of children with LLRD reported greater emotional challenges, personal sacrifices, and financial burdens compared to caregivers of children with PKU. Significant differences included heightened emotional distress, more frequent conflicts, and lower assessments of healthcare support among LLRD caregivers. Although family support ratings were similar between the groups, perceptions of financial concerns and interactions with the healthcare system varied significantly. Conclusions: This study, representing the inaugural systematic comparison of specific caregiver cohorts overseeing children with RDs across a substantial sample size, provides valuable insights. The findings lay a crucial foundation for precisely tailoring assistance and support initiatives to meet the unique needs of caregivers facing various RDs in diverse contexts. [ABSTRACT FROM AUTHOR]

This paper explores the exceptional intercultural encounter between secular therapists and Ultra-Orthodox Jews in Israel, focusing on two key aspects. Firstly, it explores the distinctive attributes and conflicts inherent in treating Ultra-Orthodox individuals. On the one hand is the secular Israeli therapist, whose base is in Western philosophy that prioritizes individuality, cultural diversity, and tolerance of differences. On the other hand is the Haredi client, entrenched in values from Jewish tradition and religious principles that amplify solidarity and collectivism while rejecting prevalent secular culture. The existing sociopolitical climate in Israel often positions these two as potentially conflicting cultures. Secondly, the paper seeks to illuminate the uncommon dynamics of the minority-majority power balance within the therapeutic relationship. In contrast to prevalent literature in intercultural therapy, which typically frames the client as a representative of a disadvantaged minority and the therapist as a representative of a dominant majority, this article aims to unravel a nuanced power balance, where those in the minority perceive the dominant culture both as a threat to its way of life and as a despised entity, but paradoxically rely entirely on its financial support. This reveals a complex and intricate interplay of dominance and dependence, shaping a therapeutic relationship that defies conventional expectations. [ABSTRACT FROM AUTHOR]

Background Although biobanks have become fundamental to many research centers and contribute to medical development, they generate many ethical and legal issues that may discourage patients from donating. Materials and Methods To understand patients' perception of ethical and legal issues related to biobanks we conducted a survey among 548 Polish patients with cancer. Results While 93.1% of patients with cancer declared themselves willing to donate biospecimens left over after a medical procedure to a biobank, most opted for one-time consent or study-specific consent, blanket consent being less frequently preferred. Many patients believed that future use of previously collected tissues require second contact. Most patients preferred pseudonymization over anonymization of the data, and supported donors' right to withdraw informed consent at any given moment. Finally, while personal health information was the most expected form of compensation for donation, most patients suggested that all parties, including the biobank concerned, the sponsors of the research, and the donors, should own the rights to cancer tissues donated and profit from the biobank research. Patients' opinions on the ethical and legal issues related to biobank research were associated with age, sex, religiosity, education level, and place of residence. Conclusions Since biobanks generate ethical and legal issues related to informed consent, data protection and storage, as well as the sharing of biosamples, tissue ownership, and profit sharing, that may discourage patients from donation, when asking a patient for a donation, healthcare professionals should communicate in a donor-centered manner and address patients' ethical and moral concerns related to donation and offer resources to help manage these concerns. [ABSTRACT FROM AUTHOR]

Objectives: This study was designed to determine the relationship between religion and healthcare practitioners' attitudes towards conscience clauses in Poland. Methods: We developed a survey assessing impact of religion on attitudes healthcare professionals towards the conscience clause. These questions were explored using a sample of 300 Polish healthcare professionals. Results: The results indicate that religiosity was a significant predictor of acceptance of conscience clauses. It also influenced healthcare practitioners' opinions on medical professionals that should be granted the right to conscience clauses and medical services that may be denied on moral grounds. There was also a significant relationship between healthcare practitioners' religiosity and their eagerness to use conscience clauses in a situation of moral conflict. Finally, religious healthcare practitioners were more concerned about the personal consequences of using this right in a medical environment. Conclusion: This study shows that at the same time, both religious and non-religious healthcare professionals believed that the Polish regulations regarding conscience clause are unclear and inaccurate, therefore leading to misinterpretation and abuse regulation of law. [ABSTRACT FROM AUTHOR]