The Pediatric Healthcare Research Group is a multidisciplinary group representing researchers from the fields of pediatrics, psychology and nursing sciences. The group’s work focuses on care processes on the interpersonal and organizational levels (micro- and meso-level) in a variety of settings including children with chronic complex conditions and vulnerable populations.
A particular strength of our group is the combination of a vast experience of clinical care for patients and families with expertise in qualitative and quantitative methodologies. Collaborations with external partners such as the Section for Healthcare Research at the Freiburg University Medical Center, pediatricians in ambulatory settings and patient organizations ensure access to care processes and methodological rigor. We aim to include patients and caregivers in research projects as partners to ensure high levels of patient-centeredness in the research process.
GrowDMD: Growing into adulthood with Duchenne Muscular Dystrophy – comparing patient experiences and systems to optimize care
Despite transition guidelines for best practice, patients, caregivers, and service providers often encounter a variety of challenging barriers. For patients with Duchenne Muscular Dystrophy (DMD) the transition period is particularly challenging due to the loss of motor functions during adolescence. In this study, we analyze the lived experience of patients/caregivers with DMD living in different countries (Canada, Italy, and Germany). Patients and caregivers participate in the research process as patient research partners in all project stages (Germany, Italy, Canada). In a mixed methods design we compare differences and similarities on the level of patients/caregivers and care organizations with regard to the realization of transition guidelines. Through the identification of barriers and enablers, we will develop a conceptual model and policy recommendations to improve the quality of transition and opportunities for participation for patients with DMD that can be applied to other countries.
The German research part is funded by the BMBF: www.growdmd.org
Measuring and enhancing participation of children with disabilities: Psychometric Evaluation of the Participation and Environment Measure for Children and Youth (PEM-CY German version) and application in collaborative care planning for children with disabilities
Participation is an important goal of health and rehabilitation services, yet few comprehensive measures of this multidimensional concept exist. The Participation and Environment Measure for Children (PEM-CY) was developed as a parent-report measure to examine participation and the impact of the environment on the participation of children with and without disabilities. It can be a useful tool for healthcare providers allowing for a multidimensional, structured assessment of a child’s participation in clinical practice and care planning. This study will conduct a psychometric evaluation of the PEM-CY (German version) and pilot the application of the PEM-CY for collaborative care planning in an outpatient setting with the goal of enhancing participation of children with disabilities.
The project is funded through the clinican-scientist fellowship “Berta-Ottenstein-Program” granted to Anne Geweniger.
Pediatric Attention to Help
In P.A.T.H we evaluate an intervention to enhance the intersectional care for burdened families with a child aged 0-3 years. In well-child visits we explore the pediatricians´ clinical case finding of families who are exposed to psychosocial risk. By analyzing the motivational talk of trained pediatricians we analyze how the low rate of transference of vulnerable families to the early prevention network can be improved.
Patient advisory panel for the Pediatric Healthcare Research Group
Funded by a grant from Freiburg University, we are currently developing a framework with patients and patient representatives for a patient advisory board. This group will eventually collaborate in our research on various levels including strategic planning, project development and implementation.
Immunizations schemes differ slightly worldwide in regards to timing (measles, VZV), need (e.g. BCG) or availability (e.g. HPV). In addition, vaccinations are missed through war and displacement. I-CARE (Immuniztion Coverage Among Refugees in gErmany) focuses on the immunization coverage of refugee children in Germany. It collects data on obtained vaccinations and route of flight through interviews. This information is then linked with antibody levels for standard vaccinations (e.g. measles, diphtheria, tetanus). This study is supported by the Theodor-Escherich-Prize from DGPI granted to Benedikt Spielberger.
In 2015/2016 and from 2021 Germany has experienced an influx of refugees from several countries, predominantly the middle-east (Syria, Afghanistan), European countries (Turkey, Ukraine) and sub-Saharan countries. One third of the refugees are children or adolescents, which are over-represented among the refugees worldwide. Children and adolescents are generally considered a vulnerable group. When forced to leave theirs home-countries children and adolescents are threatened in different ways either through missed routine vaccinations or through traumatic events in a susceptible life phase. Although german and international infectious diseases societies recommend infectious diseases screenings among refugees, it is unclear to which extent these recommendations can be executed. SAVE-KID aims to collect information on the feasibility and application of infectious diseases screening in refugee children and adolescents in Germany. SAVE-KID also collects data on availability of translators (in person or electronic) and psychological and behavioral disorders in minor refugees. The study is supported by the Theodor-Escherich-Prize from DGPI granted to Benedikt Spielberger.
From July 2022 an upsurge in cutaneous diphtheria was detected among adolescent refugees in Germany. Most of them had fled via the Balkan states. CUDAAR (CUtaneous Diphtheria Among Adolescent Refugees) collects data on those diphtheria cases from Germany, Switzerland and Austria. The study is supported by the Theodor-Escherich-Prize from DGPI granted to Benedikt Spielberger.
Thanks to great advances in HIV-therapy, most infants born to women living with HIV (WLWH) are not infected. Several studies from Sub-Saharan Africa showed that these HIV exposed, uninfected (HEU) children have a higher risk for infection, slower growth and slightly reduced gross motor function, when compared with HIV unexposed, uninfected children (HUU). Studies from Denmark and Spain confirmed these effects in part. GEPIC Neo is a project within the German Exposed and Perinatally Infected Children (GEPIC) Cohort to examine the HEU children in Germany. Several subprojects address e.g. non-disclosure of HIV-infection or breastfeeding in HEU children. German university hospitals include their patients in GEPIC. This makes GEPIC the largest pediatric HIV cohort in Germany. Data is shared with international registries, e.g. EPPICC. This project is supported through a research grant from Gilead Sciences awarded to Benedikt Spielberger
Psychologic burden in children and adolescents in reception camps – PriCareNet
Refugee children and adolescents may have experienced multiple traumatic events, e.g. war, natural disaster, physical or psychological violence, hunger, or displacement. The number of minor refugees diagnosed with a psychological, behavioral, or psychiatric disorder is highly variable. In this study we investigate data collected through PriCareNet in routine care in refugee reception centers. We also assess if local structures, e.g. presence of psychologists, pediatricians, etc., influence the diagnoses and treatments. This a cooperation project with PriCareNet. The study is led by Benedikt Spielberger.
The CARE-FAM-NET project comprises a total of 45 consortium partners from hospitals and scientific institutions working closely together with health insurance providers, self-help organizations and cooperation partners from youth welfare, the education system and federal policy. The common goal is cross-sectoral psychosocial care for children with rare diseases, their siblings and parents at 18 locations in 13 federal states and, ultimately, implementation of this approach as standard care. To this end, the children’s clinics will be networked with a psychosocial care unit and the regional Center for Rare Diseases.
This project is funded by the German Federal Innovation Fund (Gemeinsamer Bundesausschuss Innovationsfonds).
SMA-C+: Development of an IT-supported Case Management for Children with Spinal Muscular Atrophy
We are developing a tailored Case-Management (CM) on the basis of a thorough descriptive study investigating the coordination activities and needs of caregivers and the respective indirect costs. An exploratory, comparative evaluation will be conducted to investigate the effect of the CM on the quality of care integration and health-related quality of life of caregivers.
This project is funded by the German Federal Innovation Fund (Gemeinsamer Bundesausschuss Innovationsfonds). The GBA’s decision can be found here: SMA-C+ – Entwicklung und Evaluation eines IT-gestützten Case Managements zur Verbesserung der Versorgung von Patienten mit Spinaler Muskelatrophie (SMA) – G-BA Innovationsfonds
Patient Guide Program for Patients with Muscle Disorders
Evaluation of a patient guide program provided by the German Society for Muscle Diseases (Deutsche Gesellschaft für Muskelkranke e. V., DGM) in five muscle centers in Germany. Patient guides are healthcare workers who support organization and care for patients with muscle disorders when they visit a muscle center. We evaluate the impact of patient guides’ work on the workload of clinicians and patient satisfaction over 3 years (Oct. 2020 until May 2023) using a mixed methods approach. Final report: https://www.dgm.org/beratung-unterstuetzung/dgm-patientenlotse DGM-Patientenlotse | Gesellschaft für Muskelkranke e. V.
Interprofessional Collaboration with Medical Interpreters
Improving the collaboration between interprofessional clinicians and medical interpreters. We evaluate interprofessional educational intervention including an enactment (triad physician, interpreter, patient) using a pre-post survey among participants.
The Covid-19 Children’s Network Study – a Longitudinal Comparative Online Survey
In the Covid-19 Children’s Network Study, we want to better understand the effects of measures to control the Covid-19 pandemic on children with chronic medical conditions and disabilities; in particular, we ask how control measures (“Lockdown”) affect the quality of care and the opportunities to participate in life for these children and their families over the course of the pandemic. The results will provide insight into which children and adolescents experience the strongest social and medical effects and which measures have the strongest impact on wellbeing. The study will inform policymakers, healthcare leaders and special education settings as they develop strategies which balance the need for infection control with children’s right to optimal medical care and opportunities to participate in life
Social pediatric care and bio-psycho-social health for children and adolescents during the Covid-19 pandemic
Children with chronic illnesses and disabilities and their families are particularly affected by the Covid-19 pandemic and the associated measures to protect the population from infection. In the project, the well-being of children and adolescents with and without chronic illnesses / disabilities and their families will be examined from different perspectives. This project builds on the results of the The Covid-19 Children’s Network Study and aims at identifying best-practice models and developing solutions for care organiszations in collaboration with the Children’s Network. Funding: Federal Ministry of Health (BMG)
Evaluation and further development of the lollipop method as SARS-CoV-2 screening in daycare centers and schools
The so-called “lollipop method” developed at the University Clinic in Cologne enables a non-invasive method of taking samples and is a possibility for a SARS-CoV-2 screening program in daycare centers and schools. In order to evaluate the benefits of this method and to optimize its use, the University Clinic in Cologne, the University Clinic in Freiburg and the Robert Koch Institute conduct a online survey to describe the effects on children and adolescents in schools and daycare centers. Funding: Federal Ministry of Health (BMG)