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. 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 socio-political 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.

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. RESULTS: The study yielded three significant findings. It unequivocally demonstrates that nursing and midwifery students possess inadequate knowledge regarding Jehovah's Witnesses' stance on blood transfusions and their acceptance of specific blood products and medical procedures. Despite being cognisant of the ethical and legal dilemmas of caring for JW patients, students lack an understanding of patients' autonomy to reject blood transfusions and their need for bloodless medicine. Students also articulated educational needs regarding cultural competencies regarding the Jehovah's Witnesses' beliefs on blood transfusions and non-blood management techniques. CONCLUSIONS: Healthcare professionals need the knowledge and skills necessary to provide holistic, patient-centred and culturally sensitive care. This study emphasises the urgent need for university curricula and nursing postgraduate training to include modules on transcultural nursing and strategies for minimising blood loss.

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 Poznan, Poland. MATERIAL AND METHODS This study utilized data from questionnaire-based survey conducted from February to June 2023 among 548 patients from 2 Poznan hospitals equipped with oncology treatment units. The survey employed convenience sampling. Statistical analysis was carried out using JASP 0.18.3 and PQStat1.8.6., with significance levels set at 0.05. Descriptive statistics and logistic regression were utilized to present the results. RESULTS 92.2% of cancer patients supported the establishment of cancer research biobank in Poland, and 93.1% declared the willingness to share their cancer tissues for research purposes. Patients' willingness to donate was associated with biomedical research conducted by biobanks and types of biobank institutions. Most patients were willing to donate for research on cancer, genetic and autoimmune diseases or dementia, but were reluctant to participate in research on sexual identity, intelligence, aggression and for-profit research. Patients were willing to donate to biobanks managed by medical universities, public institutions, clinical hospitals and national biobanks but not to foreign and private biobanks. CONCLUSIONS Although patients' support for cancer biobank is high it is not unconditional as their willingness to participate in cancer-related research is associated with types of biomedical research conducted by biobanks and different types of biobank institutions.

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. Responses from 925 caregivers of 1002 children with CRD revealed that the duration of the diagnostic journey varied, spanning from 0 to 18 years, with an average time of 1.7 years. Similarly, the average number of physicians consulted before receiving the correct diagnosis was 4.8. The Internet was basic source of information about children's disease. Although caregivers were to some extent satisfied with the quality of health care for CRD, they complained at the accessibility of health care and social services, physicians' ignorance regarding RDs, the lack of co-ordinated care and financial and psychological support. To break the cycle of the diagnostic and therapeutic odyssey that may aggravate the condition of CRD, cause parental stress and financial burden there is a need to change our view on CRD from cure to family-oriented care. Multifaceted challenges and needs of CRD families should be prioritized.

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 Poznan 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. Their willingness to participate was driven by the desire to benefit society, help advance science and develop new therapies. While students supported donation for most types of research, biobanks run by medical universities were the highest trusted research institutions. The primary factors associated with student's willingness to participate were religiosity and place of study. Notably, nonreligious students and those studying in Poznan exhibited more favourable attitudes toward donating for research and expressed greater support for the establishment of research biobanks in Poland. Conclusion: Since biobank awareness among future pharmacists is inadequate incorporating biobank competency domains into education and training of pharmacists is required.

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 93.1% 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.

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. A total of 441 medical students at Poznan University of Medical Sciences completed a web-based survey designed to explore their attitudes toward the six most prevalent anti-vaccine conspiracy theories. The survey showed that although over 97% of future doctors support vaccinations as an effective form of fighting infectious diseases, and 80% did not believe in any anti-vax conspiracy theory, a significant fraction of 20% of medical students either believed in at least one such theory or were unsure. It has also shown that male and younger students who had not received a flu vaccination and defined themselves as politically right-wing or conservative and religious were more likely to believe in anti-vax conspiracy theories. Our data suggest that, in order to overcome medical students' ambivalent attitudes towards anti-vax conspiracy theories, they should receive more education about the importance of vaccination in preventing disease and about effective ways to combat vaccine hesitancy and anti-vax conspiracy theories.

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

Background: 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. Methods: This research includes data from an anonymous, self-administered online questionnaire regarding MSs' support for research biobanks in the RoK. Results: Only 212 (31.3%) MSs have heard of biobanks and 466 (68.7%) have not. Students who were biobank-aware held more positive views regarding biobanks, were more likely to support the idea of establishing a research biobank in Kazakhstan, and expressed a greater willingness to donate their biological material for research purposes. Students' awareness of biobanks was also associated with the respondents' motivations to donate. Students who were familiar with biobanks tended to be motivated by altruistic reasons more often, and those unfamiliar with biobanks tended to indicate selfish motives. Students' attitudes toward donation to various types of research and biobanks were influenced by their awareness of biobanks, any family history of genetic disease, experience of chronic disease, declared religiousness, hospitalization history, blood donor status, and year of study. Conclusion: Since MSs' awareness of research biobanks is low, there is an urgent need for biobank education in Kazakhstan.

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 43.4% of patients had heard of biobanks, 93.1% declared themselves willing to donate. 71.1% of patients believed that doctors should ask patients to donate, and 60.9% that this should be done before the medical procedure. While 65% of patients were willing to donate any type of tissue that remained after a medical procedure, blood, saliva and hair were indicated most frequently. 40.5% of patients would donate their entire body after death and 21% would refuse. Patients' support for biobanks was mainly driven by the desire to support science, help advance cancer research and altruism. Some respondents expected health information or medical treatment. The most common barriers for donation were physical distance, repeated examinations, concerns over the privacy and confidentiality of data and the commercial or unethical use of samples. Patients' attitudes toward biobank donation seemed to be associated with age, education level, declared religiousness, a family history of genetically determined diseases and whether they were a blood donor. CONCLUSIONS: Although cancer patients' lack of biobank awareness had no effect on their affirmative attitudes towards biobank research, there is a need to further increase patients' support and overcome possible barriers that might hinder their willingness to donate.

Evaluating the challenges and needs of parents caring for children with Williams syndrome: A preliminary study from Poland.

BACKGROUND: Although physical, cognitive and behavioural manifestations of Williams syndrome (WS) affect every dimension of caregivers lives, no studies on the parental experiences of caring for a WS child have to date been carried out in Poland. METHODS: In order to identify the challenges and needs of Polish carers of WS children a survey was conducted with 32 family caregivers who were supported by the Polish Williams Syndrome Association. RESULTS: While caregivers were mostly challenged by their WS child's behaviours, health problems and mood swings, many parents experienced fatigue, intimacy problems with the partner and deterioration of mental health. They were also burdened by the lack of time for themselves and work restrictions resulting from caregiving responsibilities. Even though parents positively assessed quality of medical care for WS children, still many expressed their dissatisfaction both with the way the healthcare system for WS children works in Poland and complained about the doctors' lack of knowledge about WS, access to specialist care and lack of support from government and social institutions. Although many parents stressed positive impact of rising WS child, more than half experienced role captivity or role overload and felt not being understood by others. They also experienced variety of distressing emotions, including impatience, emotional lability, helplessness, anxiety and depression. CONCLUSIONS: Although many WS parents stressed the affirmative aspect of raising WS child this research shows that the burden of caring for such a child goes far beyond clinical aspects and seriously affects every aspect of parents' lives, including their mental health, daily lives, family, their professional and social lives. Because apart from the daily challenges related to caring for a WS child, parents' dealings with the healthcare system and support services represent major problems there is a the need for a bio-psychosocial approach to WS that should include not only WS children, but also their caregivers. WHAT THIS PAPER ADDS?: 1. It analyses the challenges and needs of parents caring for children with Williams syndrome; 2. It provides evidence that the impact of caring for WS children goes far beyond clinical aspects and seriously affects every aspect of parents' lives, including their mental health, daily lives, family, their professional and social lives; 3. It also shows that, apart from the daily challenges related to caring for a WS child, parents' dealings with the healthcare system and support services represent major problems. 4. Thereby, it highlights the importance of incorporating a bio-psychosocial approach to WS that should include not only WS children, but also their caregivers.

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. 46.5% reported feelings of care overload, 43% coped poorly with the stress, and many experienced a variety of feelings of distress towards the role of caregiver. While most caregivers struggled with the diagnostic odyssey and were dissatisfied with the healthcare services for URD children, caregivers of children diagnosed through prenatal or newborn screening were significantly less burdened than the parents of children with symptom-based diagnoses. CONCLUSION: Although caregivers of URDs children experience physical and emotional strain, they are often neglected by the healthcare system. A bio-psychosocial approach to URDs should therefore also include family caregivers' physical and psychosocial needs. Apart from financial and emotional support, enhancing access to genetic testing and newborn screening should be prioritised.

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 Poznan 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. Religious beliefs were also associated with medical students' perception of benefits and risks resulting from biobanking, perceived trust toward various biobank institutions, and preferred type of consent.

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 22q11.2DS children. An online survey was developed consisting of four sections: demographics, emotions experienced by caregivers while performing their duties, attitudes of the respondents about providing care, and finally different aspects of the caregivers' life satisfaction. The study was conducted with the support of the Polish 22q11 Association. RESULTS: Forty-four caregivers of Polish origin completed the survey, all but one of whom were mothers. Thirty-four per cent (n = 15/44) declared full-time employment. According to 73% (n = 32/44) of those surveyed, the child's disease has not harmed their relationship with the partner. In spite of the fact that the median diagnosis time was 1.9 years (ranging from 0 to 12 years), the caregivers indicated that they had contacted on average 3.9 doctors before obtaining the right diagnosis (range 1-17). The Internet was the main source of information and knowledge about their child's disease for 93% of respondents (n = 41/44), while for 54% (n = 24/44) it was the association for people with 22q11DS. Only 26% rated as very good or good the support for caregivers offered by the central and local government or its agendas. The physicians' knowledge about 22q11DS was positively rated by 14% of respondents (n = 6/44). The most frequently chosen source of support for 66% of respondents (n = 29/44) turned out to be their families, and for 34% - a Facebook support group (n = 15/44). Asked how often they rated their quality of life (QoL) highly, none of our respondents chose the option "always", although 64% (28/44) gave the answer "often". CONCLUSION: Our study is the first one in Poland to develop an online survey specifically for use with caregivers of paediatric patients with 22q11.2DS. Our respondents revealed that caring for 22q11.2 children entails a burden that extends far beyond clinical facets and has a significant impact on every dimension of the caregivers' lives, including their mental health, everyday activities, families, professional career and social lives. At the same time, caregivers are de facto left alone with the bureaucracy of the healthcare system.

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

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.

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. A total of 1500 students responded and completed the survey. The questionnaire used multiple-choice closed-ended questions designed to explore medical and healthcare students' preferences for sharing particular types of tissues and donating to a particular type of biomedical research. It asked three questions: 1. Which type of tissue would people be willing to donate for research purposes? 2. Which organs would they be willing to donate after death? 3. What type of research would they be willing to donate to? While future healthcare professionals' beliefs regarding certain types of tissues and research can influence their willingness to donate for research purposes, many students tend to think about the body and biomedical research in terms of clusters. Consequently, their willingness to donate certain tissues for a particular type of research can affect their decision to donate other tissues. Our data suggest that cluster thinking with regard to donation can be a predictor of people's readiness to participate in the collection and management of biospecimens.

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. We analysed data from the newest European Social Survey (ESS10) round conducted between September 2020 and September 2022 in 26 countries. We found religiosity weakens, and trust in scientists strengthens the effect of education, while the impact of political orientation is not straightforward. The result also demonstrates a significant negative correlation between the aggregate country-level data of the respondents supporting CTs and the level of vaccination and cumulative excess deaths in Europe. We concluded with a recommendation that planning effective public health strategies and campaigns are insufficient when based solely on people's education, as individuals' beliefs moderate the effect of education.

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

Objectives: The study describes the attitudes of Polish nursing personnel towards Jehovah's Witnesses' (JWs') refusal to receive blood and blood products. Methods: 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. These questions were explored using a sample of 202 Polish nurses. Results: Nurses' knowledge of JWs' stance towards blood transfusions is inadequate and they tended to be ill-disposed towards JWs' refusal of blood transfusions. Although most nurses respected adult JW patients' autonomy and supported their right to refuse blood, in the case of JW children they are guided by paternalism. Nurses' attitudes were affected by whether they had children, whether they declared themselves religious, their level of education and prior experience with patients who had refused a blood transfusion. Conclusion: Since most nurses felt unprepared to care for JW patients, this study reveals an urgent need to train nurses in transcultural nursing and increase nurses' cultural competencies, and that this should be incorporated into medical curricula .

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. The survey was completed by 75 family caregivers affiliated with the Association for People with Severe Refractory Epilepsy DRAVET.PL on Facebook. Most caregivers felt burdened by their children's reduced mobility (57.3%), mood swings (57.3%), lack of access to rehabilitation and medicine (56%) and healthcare expenses (50.7%). Caregivers also complained of a lack of time to themselves (76%) and work restrictions resulting from caregiving (72%). They consequently reported experiencing fatigue (84%), a deterioration of mental health (60%) and intimacy problems with their spouse/partner (53.4%). An important source of strain was a prolonged diagnostic odyssey and the constant struggle over the healthcare services for DS children. Since DS caregivers' problems and needs are often overlooked, they may be described as the forgotten people in DS. Healthcare professionals should be educated about the challenges related to caring for DS child, psycho-social status and coping resources of DS caregivers, and should focus on identification, monitoring and supporting caregivers' physical and mental well-being and needs.

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. METHODS: This study is aimed at assessing the knowledge and attitudes of future healthcare professionals towards the donation of human biological material for research purposes and is based on a sample of 865 Polish medical students at Poznan University of Medical Sciences. RESULTS: This research has shown that the awareness of medical students' regarding biobanks is low. It has also shown that while the majority of future healthcare professionals enrolled in this study supported the idea of biobank research and declared themselves willing to donate, still many students felt ambivalent about the biobanking of human biological material for research purposes and expressed concerns over biobanking research. While the primarily motivation to participate in biobank research was the desire to help advance science and to develop innovative therapies, the most common reason for a refusal was the fear that the government, insurance companies or employers, might have access to the samples. Concerns over unethical use of samples and data safety were also prevalent. More than half of students opted for a study-specific model of consent and only a few opted for broad consent. CONCLUSIONS: This research suggests that a lack of knowledge about biobanks, their role and activities may affect medical students' support for biobanks and their active participation in the collection and management of biospecimens for research purposes. Since in the future medical, nursing and pharmacy students will be involved in the collection, storage, testing and analysis of biospecimens from their patients, medical students in all professional fields should be trained regarding the concept, purposes and operational procedures of biobanks, as well as the ethical, legal and social implications of biobank research.

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. Methods: Between October 30th, 2022 and February 28th, 2023, we collected data from caregivers of children with PKU using an anonymous, self-administered, computer-assisted online questionnaire. The survey was distributed among to patients during their regular visits to five Polish PKU treatment centers. Results: A total of 159 Polish caregivers of children with PKU completed the survey. This research shows that while women caregivers were more likely to be unemployed due to their responsibilities for childcare (50.3% compared to 0% for men), and men caregivers were more likely to be employed full-time (93.8% compared to 40.6% for women), the former reported higher emotional engagement in caregiving (88.1% vs 56.3% respectively). Significantly, unemployed mothers reported higher levels of loneliness, helplessness, and emotional control problems, and lacked psychological/emotional support more often than employed mothers. This research also shows a statistically significant positive correlation between mothers' education level and financial situation (p < 0.05) and education level and professional activity (p < 0.01). Additionally, a significant positive correlation was found between perceived financial situation and feeling of happiness (p < 0.001), and between financial situation and professional activity (p < 0.001). Finally, a significant positive correlation was observed between feeling of happiness and professional activity (p < 0.05). Conclusions: According to our findings, there is a link between subjective happiness, financial situation, and professional activity among female caregivers. The relationship between these factors goes beyond just the income earned from work. The results of our study imply that there could even be a therapeutic advantage for working mothers. It is crucial to recognize the emotional difficulties that employed mothers may experience while taking care of a child with PKU, and to provide them with the necessary assistance and resources to meet their needs. Additionally, our results may provide a foundation for redefining the support system for caregivers in Poland.