A5027355551- Genomics and Rare Diseases
- Family and Disability Support Research
- Neurogenetic and Muscular Disorders Research
- Immunodeficiency and Autoimmune Disorders
- Health Systems, Economic Evaluations, Quality of Life
- Adolescent and Pediatric Healthcare
- Child and Adolescent Psychosocial and Emotional Development
- Congenital Anomalies and Fetal Surgery
- Mindfulness and Compassion Interventions
- Hypertrophic osteoarthropathy and related conditions
- Digital Mental Health Interventions
- Infant Health and Development
- Down syndrome and intellectual disability research
- Interprofessional Education and Collaboration
- Childhood Cancer Survivors' Quality of Life
- Family Support in Illness
- Patient-Provider Communication in Healthcare
Universität Hamburg
2020-2024
University Medical Center Hamburg-Eppendorf
2020-2024
Abstract Background During the COVID-19 pandemic people affected by rare diseases (RD) or caregiver of children have faced additional challenges. The has physical and mental health, social life led to financial consequences. Our objectives were identify impact (1) on health care (2) daily participation patients with RDs caregivers from perspective representatives patient organizations. Moreover, we explored their experiences stress resources during pandemic. Results We conducted 18...
Spinal muscular atrophy (SMA) is a neurodegenerative disorder that characterized by progressive weakness, respiratory insufficiency, and dysphagia. Due to symptom burden disease progress, its care management impact on daily life can severely the families of affected children. The objectives this study are (1) explore health experiences (2) investigate psychosocial needs parents children with SMA. In total, 29 patients SMA participated in our study. All received supportive therapy (e.g.,...
Abstract Background Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare is organized in expert centers diseases. Most patients additionally have regional general practicioners specialists basic medical care. Thus, collaboration information exchange between sectors highly relevant. Our study focuses on the patient caregiver perspective intersectoral interdisciplinary care local professionals (HCPs) Germany. The aims were (1) to...
Abstract Background Mindfulness training (MT) for parents of adolescents has been shown to improve mental health and stress-related outcomes in individuals their families. Studies MT among young people are mainly delivered educational or clinical settings, there is a need controlled studies on both parent-directed adolescent-directed approaches. It unclear whether preventive effects substance use outcomes. The primary objective this trial evaluate the effectiveness family-based targeting...
Spinal muscular atrophy is a rare neurodegenerative disorder in children which leads untreated to muscle wasting, respiratory impairments, and shortened life expectancy. Parents as primary caregivers are often physically psychologically burdened. In recent years, new promising treatment options have been approved, but it remains unclear if they an impact on the psychosocial situation of affected families.
Rare diseases often present complex symptoms and usually require intersectoral collaboration during diagnostic therapeutic processes involving inpatient outpatient care. Hence, smooth interfaces with little loss of information cooperation are essential to provide appropriate Our study, the project ESE-Best, aims at developing recommendations for design implementation care patients rare using various survey instruments.Using quantitative qualitative methods, multiple perspectives (primary...
Patients and families affected by a rare disease are burdened in multiple ways. Functional interface management can unburden patients or relatives from the need to be solely accountable for navigation through healthcare system. This study aims at (1) providing an assessment of approaches concepts care diseases, (2) evaluating selected existing (3) developing best practice recommendations management.We will conduct mixed-methods with three phases. In phase 1, we develop tool assess diseases...
Zusammenfassung Hintergrund Seltene Erkrankungen sind häufig durch komplexe Beschwerdebilder charakterisiert und erfordern in der Regel im Diagnose- Versorgungsverlauf die Koordination multiprofessioneller Behandlungsteams. Im Zuge COVID-19-Pandemie veränderten sich medizinische Versorgung Lebensalltag von Menschen mit einer Seltenen Erkrankung bzw. den Eltern bei minderjährigen Patient:innen drastisch. Das Projekt RESILIENT-SE-PAN („Retrospektive Analyse Versorgungssituation des...