Quality of life and caregiving burden associated with parenting a person with Duchenne/Becker muscular dystrophy in Poland.

Background: Duchenne and Becker muscular dystrophies (DBMD) are rare progressive, X-linked diseases of muscle wasting characterised by the early onset and prognosis of premature death. The aim of this study was to evaluate the impact of providing care for a person with DBMD on caregivers' quality of life, perceived burden and financial well-being.

Results: 202 Polish caregivers of a person with DBMD were included and completed a self-administered, computer-assisted online survey.

Exploring the perspectives of female cancer patients on the donation of reproductive cells for fertility preservation and research purposes.

Introduction: This study aims to explore the opinions of female cancer patients regarding the donation of cancer and reproductive cells for reproductive and research purposes.

Material And Methods: The study involved 373 female cancer patients from 2 hospitals with oncology departments in Poznan, Poland. They completed a pen-and-paper questionnaire-based survey.

Association between beliefs in medical conspiracy theories and health behaviors among medical and healthcare students. Implications for professional practice.

Background: While conspiracy theories cover many different themes, medical conspiracy theories (MCTs) have become particularly prevalent in modern societies. As beliefs in MCTs can become a source of "infodemics", influence individual health behaviors and cause distrust in medical institutions and personnel, healthcare workers must find ways to overturn patients' conspiracy thinking. However, as the medical world is not free of these beliefs, in this study, we investigated beliefs in MCTs among medical and health science students and their association with reported health behaviors.

Navigating the Unique Challenges of Caregiving for Children with Rare Diseases: Are the Care Experiences of All Caregivers the Same? A Focus on Life-Limiting Rare Diseases.

: 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. : This study was conducted as a self-administered, anonymous, computer-assisted online survey, focusing on the challenges of caregiving for children with RDs.

"In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.

Most children with a rare disease are cared for by their family members but parenting such a child is extremely demanding due to the complexity and severity of symptoms, with serious physical, emotional, social, and financial consequences for caregivers. Although religion may serve as a positive coping strategy, little is known about its role in helping caregivers manage the stress related to the burden of caregiving in Poland. Therefore, we surveyed 925 Polish family caregivers of children with rare diseases to understand the association between caregivers' religiosity and their caring experiences.

Intercultural therapy with Ultra-Orthodox Jews in Israel: the complexity of the encounter between secular therapists and Haredi clients.

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.

Invisible patients in rare diseases: parental experiences with the healthcare and social services for children with rare diseases. A mixed method study.

This study explores the experiences of Polish caregivers of children with rare disease (CRD) with health care and social services for CRD. A mixed-methods approach was employed, using an open-ended questionnaire with a convenience sample. Quantitative data presented through descriptive statistics, were complemented by thematic analysis applied to qualitative responses.

Cultural competences among future nurses and midwives: a case of attitudes toward Jehovah's witnesses' stance on blood transfusion.

Background: Transcultural nursing recognises the significance of cultural backgrounds in providing patients with quality care. This study investigates the opinions of master's students in nursing and midwifery regarding the attitudes of Jehovah's Witnesses towards refusing blood transfusions.

Methods: 349 master's students in nursing and midwifery participated in a quantitative study and were surveyed via the Web to evaluate their awareness of the stance of Jehovah's Witnesses on blood transfusions and the ethical and legal dilemmas associated with caring for Jehovah's Witness (JW) patients.

Trust and Support for Cancer Research Biobanks: Insights from Cancer Patients in Poland.

BACKGROUND Biobanks are legally regulated entities that acquire, store, prepare, preserve, test, analyze, and distribute defined biological material and related information and data from human sources. This study aimed to evaluate trust, support and willingness to donate personal data and tissue samples for biobanking from cancer patients attending oncology departments in Poznań, Poland. MATERIAL AND METHODS This study utilized data from questionnaire-based survey conducted from February to June 2023 among 548 patients from 2 Poznań hospitals equipped with oncology treatment units.

Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.

Objectives: This study aimed to assess the biobank awareness among Polish pharmacy students and how it affects their support for biobank research.

Methods: A survey among 366 pharmacy students enrolled at two Polish medical universities: the Poznań University of Medical Sciences and Medical University of Lublin was conducted.

Results: Although most pharmacy students felt positivity about biobanking and expressed the willingness to donate their biospecimens for biomedical research, their awareness on research biobanks was low.

Investigating Beliefs in Anti-Vax Conspiracy Theories among Medical Students.

While the doctors' role in immunization is essential, their lack of knowledge or vaccine hesitancy may affect their ability to communicate effectively and educate patients about vaccination, vaccine hesitancy, and vaccine conspiracy theories. This, in turn, may hinder health policy aimed at fighting infectious diseases. Vaccine hesitancy is prevalent not only among the general population but also among healthcare workers; thus, this study is aimed at assessing future doctors' attitudes towards anti-vax conspiracy theories.

Perception of Polish patients with cancer of the ethical and legal issues related to biobank research.

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.

Attitudes of oncology patients' towards biospecimen donation for biobank research.

Background: Since the biological material that remains after diagnostic and therapeutic procedures plays crucial role in biobank research, this study aims to explore cancer patients' views on the donation of biospecimens for research purposes.

Methods: 548 oncology patients from two hospitals with oncology treatment units in Poznan, Poland, completed an anonymous, self-administered pen-and-paper questionnaire.

Results: Although only 43.

Support for Research Biobanks Among Medical Students in the Republic of Kazakhstan.

Over the past few years, several biobanks have been organized in the Republic of Kazakhstan (RoK). As research biobanks are becoming an increasingly important tool for precision medicine, they require competent biobankers who will help disseminate the idea of biobanking throughout the society and support donation for research purposes. This study aimed to assess the support for research biobanks among medical students (MSs) in Kazakhstan.

The Association Between Religion and Healthcare Professionals' Attitudes Towards the Conscience Clause. A Preliminary Study From Poland.

This study was designed to determine the relationship between religion and healthcare practitioners' attitudes towards conscience clauses in Poland. 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.

Ultra-rare ultra-care: Assessing the impact of caring for children with ultra rare diseases.

Background: We sought to assesses the impact of caring for children with ultra rare diseases (URDs) on family carers and to analyse the way these experiences differ among the caregivers of children diagnosed through prenatal or newborn screening, and those with symptom-based diagnosis.

Methods: A total of 200 caregivers of 219 URDs children completed an on-line survey regarding the challenges and experiences of caregivers of URDs children.

Results: The majority of URD caregivers felt burdened by their children's health problems, emotional and behavioural changes.

Parental experiences and needs of caring for a child with 22q11.2 deletion syndrome.

Background: For a variety of reasons, raising a child with 22q11.2DS has significant psychosocial and financial repercussions for the family caregivers. Our aim was to identify and explain the expectations and concerns of Polish parents of 22q11.

Exploring COVID-19 conspiracy theories: education, religiosity, trust in scientists, and political orientation in 26 European countries.

The COVID-19 virus disseminated globally at an accelerated pace, culminating in a worldwide pandemic; it engendered a proliferation of spurious information and a plethora of misinformation and conspiracy theories (CTs). While many factors contributing to the propensity for embracing conspiracy ideation have been delineated, the foremost determinant influencing individuals' proclivity towards CT endorsement appears to be their level of educational attainment. This research aimed to assess the moderating effect of religiosity, trust in scientists, and political orientation on the impact of education level on people's belief in COVID-19-related CTs in Europe by considering both individual-level and country-level contextual covariates of CT.

When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes.

While biobanking is expanding globally, the empirical evidence concerning the impact of religion on future healthcare professionals' awareness and willingness to donate biospecimens for biobank research is lacking. To understand how medical students' religious beliefs can fuel their questions regarding how biospecimens would be stored, cared for, and used, we conducted a survey among 1500 medical students at Poznań University of Medical Sciences. Our findings suggest that, while both religious and nonreligious students supported the idea of biobanking of human biological material and were willing to donate for research purposes, nonreligious students felt more positive toward biobanking, supported the idea of establishing biobanks in Poland more often, and were more eager to donate most types of tissues and to participate in biobank research.

Cluster Donation: How Future Healthcare Professionals Bound Certain Types of Tissues and Biomedical Research and How It Affects Their Willingness to Donate.

Although biomedical research requires cooperation with a large number of donors, its success also depends on the input of healthcare professionals who play a crucial role in promoting biomedical research and influencing an individual's decision to donate one's biospecimens that are left over after a medical procedure. This work was aimed at investigating the correlation between medical and healthcare students' willingness to donate a biospecimen, the type of tissues to be donated, and the type of biomedical research to be conducted. A population survey among medical and healthcare students enrolled at the Poznan University of Medical Sciences was conducted on their attitudes toward the donation of human biological material for research purposes.

Caring for Children with Dravet Syndrome: Exploring the Daily Challenges of Family Caregivers.

While Polish studies focus on the symptoms, causes and treatment of people suffering from Dravet syndrome (DS), much less is known about the situation of the family caregivers of DS children. This study was designed to explore the experiences, daily challenges and needs related to caring for DS children. An anonymous self-administered online questionnaire was developed.

Between Autonomy and Paternalism: Attitudes of Nursing Personnel Towards Jehovah's Witnesses' Refusal of Blood Transfusion.

The study describes the attitudes of Polish nursing personnel towards Jehovah's Witnesses' (JWs') refusal to receive blood and blood products. We developed an online survey assessing nurses' knowledge and attitudes towards JWs' refusal of blood transfusion in a life-threatening condition. It also examined nurses' attitudes towards ethical and legal issues associated with JWs' refusal of blood transfusions.

Professional activity, gender and disease-related emotions: The impact on parents' experiences in caring for children with phenylketonuria.

Introduction: Clinical management of rare diseases often fails to acknowledge the challenges faced by caregivers. Whilst management of phenylketonuria (PKU) may not be considered as dire as other conditions, most studies primarily concentrate on clinical issues, dietary adherence, or the quality of life of the PKU patients, leaving caregivers in the background. The aim of the study was to evaluate the psychosocial effects of PKU on family caregivers.

To donate or not to donate? Future healthcare professionals' opinions on biobanking of human biological material for research purposes.

Background: Over the last few decades biobanks have been recognised as institutions that may revolutionise biomedical research and the development of personalised medicine. Poland, however, still lacks clear regulations regarding the running of biobanks and the conducting of biomedical research. While the awareness of the general public regarding biobanks is low, healthcare professions and medical students also lack basic knowledge regarding biobanks, and such ignorance may affect their support for biobanks.