The Pediatric Healthcare Research Group investigates how social and cultural factors, organizational processes and personal behaviors influence the quality of health care and quality of health. Our group focuses on four main thematic areas:

• Integration of care across healthcare sectors
• Patient involvement in treatment and research
• Family coping strategies in chronic and rare diseases
• Intersectional care for burdened families
• Linguistic diversity
• Interprofessional collaboration
• Impact of COVID19 pandemic on children & adolescents

The goal of our research is to provide evidence on how to improve the quality of care for patients, how to support families and how to overcome inequalities for vulnerable populations.

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.

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).

CARE-FAM-NET

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).

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 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, DGM) in five muscle centers in Germany. Patient guides are healthcare workers 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 using a mixed methods approach.

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

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.

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)