Refine
Year of publication
Document Type
- Article (14)
- Part of a Book (9)
- Conference Proceeding (6)
- Part of Periodical (2)
- Book (1)
- Other (1)
- Report (1)
Institute
- Soziales & Gesundheit (34) (remove)
Language
- English (34) (remove)
Keywords
- Human needs (2)
- +SEC 391 EIN (1)
- Accompanied child asylum seekers (1)
- Autoethnography (1)
- Bisexuality (1)
- Children's rights (1)
- Children’s rights (1)
- Compassionate curriculum (1)
- Corona (1)
- Cultural Competence (1)
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.
Long-Term outcome of infantile onset pompe disease patients treated with enzyme replacement therapy
(2024)
Background: Enzyme replacement therapy (ERT) with recombinant human alglucosidase alfa (rhGAA) was approved in Europe in 2006. Nevertheless, data on the long-term outcome of infantile onset Pompe disease (IOPD) patients at school age is still limited.
Objective: We analyzed in detail cardiac, respiratory, motor, and cognitive function of 15 German-speaking patients aged 7 and older who started ERT at a median age of 5 months.
Results: Starting dose was 20 mg/kg biweekly in 12 patients, 20 mg/kg weekly in 2, and 40 mg/kg weekly in one patient. CRIM-status was positive in 13 patients (86.7%) and negative or unknown in one patient each (6.7%). Three patients (20%) received immunomodulation. Median age at last assessment was 9.1 (7.0–19.5) years. At last follow-up 1 patient (6.7%) had mild cardiac hypertrophy, 6 (42.9%) had cardiac arrhythmias, and 7 (46.7%) required assisted ventilation. Seven patients (46.7%) achieved the ability to walk independently and 5 (33.3%) were still ambulatory at last follow-up. Six patients (40%) were able to sit without support, while the remaining 4 (26.7%) were tetraplegic. Eleven patients underwent cognitive testing (Culture Fair Intelligence Test), while 4 were unable to meet the requirements for cognitive testing. Intelligence quotients (IQs) ranged from normal (IQ 117, 102, 96, 94) in 4 patients (36.4%) to mild developmental delay (IQ 81) in one patient (9.1%) to intellectual disability (IQ 69, 63, 61, 3x < 55) in 6 patients (54.5%). White matter abnormalities were present in 10 out of 12 cerebral MRIs from 7 patients.
This is Intellectual Output 2 (IO2) of the project “Developing a culturally competent and compassionate LGBT+ curriculum in health and social care education“ IENE9. The aim of the project is 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 through a MOOC which is aimed at health and social care teachers/trainers, workers, professionals, and learners across Europe and worldwide. The IO2 of this project, Internet Mapping and Systematic documentation of educational policies and guidelines as well as legislation at European and national level for LGBT+ inclusive education, aims to create an easy to navigate resource with information about European and national legislation/guidance/policies. Visit www.iene-lgbt.com for more information.
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.