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Bridges between families
(2016)
Issues with professional conduct and discrimination against Lesbian, Gay, Bisexual, Transgender (LGBT+) people in health and social care, continue to exist in most EU countries and worldwide.
The project IENE9 titled: “Developing a culturally competent and compassionate LGBT+ curriculum in health and social care education” aims to enable teacher/trainers of theory and practice to enhance their skills regarding LGBT+ issues and develop teaching tools to support the inclusion of LGBT+ issues within health and social care curricula. The newly culturally competent and compassionate LGBT+ curriculum will be delivered though a Massive Open Online Course (MOOC) which is aimed at health and social care workers, professionals and learners across Europe and worldwide.
We have identified educational policies and guidelines at institutions teaching in health and social care, taken into account for developing the learning/teaching resources. The MOOC will be an innovative training model based on the Papadopoulos (2014) model for “Culturally Competent Compassion”. The module provides a logical and easy to follow structure based on its four constructs 'Culturally Aware and Compassionate Learning', 'Culturally Knowledgeable and Compassionate Learning', 'Culturally Sensitive and Compassionate Learning', 'Culturally Competent and Compassionate Learning'.
Specific training may result in better knowledge and skills of the health and social care workforce, which helps to reduce inequalities and communication with LGBT+ people, as well as diminishing the feelings of stigma or discrimination experienced.
Bachground: Worldwide, more than 79.5 million people are forcibly displaced, including a significant number of migrant and refugee families with children. Migration and refugeedom affect these families in different dimensions, such as mental, physical and spiritual health. Identifying family needs and enhancing parenting skills can improve family cohesion and health, as well as smooth integration into the host country. This review is part of the Erasmus+ funded project- IENE 8 (Intercultural Education for Nurses in Europe) aiming at empowering migrant and refugee families regarding parenting skills.
Methods: This was a scoping review of literature. The IENE 8 partner countries (Cyprus, Germany, Greece, Italy, Romania, and United Kingdom) searched for peer reviewed papers, grey literature and mass media reports at international, European and national level. The time period for the search of scientific and grey literature was between2013-2018, and for mass media, it was between 2016 and 2018. Results: 124 relevant sources were identified. They included 33 Peer reviewed papers, 47 Grey literature documents and 44 mass media reports. This revealed the importance of understanding the needs of migrant families with children. Conclusion: It is evident from the literature that there is a need to support refugee parents to adjust their existing skill and to empower them to develop new ones. Healthcare and social services professionals have an essential role in improving the refugees' parenting skills. This can be done by developing and implementing family-centered and culturally-sensitive intervention programs.
Organic acidurias (OAs), urea-cycle disorders (UCDs), and maple syrup urine disease (MSUD) belong to the category of intoxication-type inborn errors of metabolism (IT-IEM). Liver transplantation (LTx) is increasingly utilized in IT-IEM. However, its impact has been mainly focused on clinical outcome measures and rarely on health-related quality of life (HRQoL). Aim of the study was to investigate the impact of LTx on HrQoL in IT-IEMs. This single center prospective study involved 32 patients (15 OA, 11 UCD, 6 MSUD; median age at LTx 3.0 years, range 0.8–26.0). HRQoL was assessed pre/post transplantation by PedsQL-General Module 4.0 and by MetabQoL 1.0, a specifically designed tool for IT-IEM. PedsQL highlighted significant post-LTx improvements in total and physical functioning in both patients' and parents' scores. According to age at transplantation (≤3 vs. >3 years), younger patients showed higher post-LTx scores on Physical (p = 0.03), Social (p < 0.001), and Total (p =0.007) functioning. MetabQoL confirmed significant post-LTx changes in Total and Physical functioning in both patients and parents scores (p ≤ 0.009). Differently from PedsQL, MetabQoL Mental (patients p = 0.013, parents p = 0.03) and Social scores (patients p = 0.02, parents p = 0.012) were significantly higher post-LTx. Significant improvements (p = 0.001–0.04) were also detected both in self- and proxy-reports for almost all MetabQoL subscales. This study shows the importance of assessing the impact of transplantation on HrQoL, a meaningful outcome reflecting patients' wellbeing. LTx is associated with significant improvements of HrQol in both self- and parentreports. The comparison between PedsQL-GM and MetabQoL highlighted that MetabQoL demonstrated higher sensitivity in the assessment of diseasespecific domains than the generic PedsQL tool.
Pooled data from published reports on infants with clinically diagnosed vitamin B12 (B12) deficiency were analyzed with the purpose of describing the presentation, diagnostic approaches, and risk factors for the condition to inform prevention strategies. An electronic (PubMed database) and manual literature search following the PRISMA approach was conducted (preregistration with the Open Science Framework, accessed on 15 February 2023). Data were described and analyzed using correlation analyses, Chi-square tests, ANOVAs, and regression analyses, and 102 publications (292 cases) were analyzed. The mean age at first symptoms (anemia, various neurological symptoms) was four months; the mean time to diagnosis was 2.6 months. Maternal B12 at diagnosis, exclusive breastfeeding, and a maternal diet low in B12 predicted infant B12, methylmalonic acid, and total homocysteine. Infant B12 deficiency is still not easily diagnosed. Methylmalonic acid and total homocysteine are useful diagnostic parameters in addition to B12 levels. Since maternal B12 status predicts infant B12 status, it would probably be advantageous to target women in early pregnancy or even preconceptionally to prevent infant B12 deficiency, rather than to rely on newborn screening that often does not reliably identify high-risk children.