Project Description

Michael Barth, PhD

Clinical Psychologist
E: michael.barth@uniklinik-freiburg.de
T: +49 (0)761 270-43950
F: +49 (0)761 270-44700

Department of General Pediatrics, Adolescent Medicine and Neonatology
Center for Pediatrics and Adolescent Medicine
Mathildenstraße 1
79106 Freiburg
Germany

The Psychological and Psychosomatic Research Group seeks to understand and improve psychological and psychosomatic wellbeing amongst children and young people living with medical conditions. Our research includes a wide range of projects and we work closely with the Pediatric Healthcare Research group.

RESEARCH PROJECTS

Psychology research at the Center for Pediatrics and Adolescent Medicine covers a wide range of areas. Examples of current and recent research include the following projects.

FAMILY COPING AND DEVELOPMENTAL ISSUES: KEY FACTORS FOR PATIENT AND FAMILY CENTERED CARE IN CYSTIC FIBROSIS (CF)

This project investigates the interaction between problematic behavior of children with CF, parental behavior and family functioning. Methods include questionnaires, interviews and observations at the home of the families.

The impact of problematic mealtime behavior on parents and family functioning. Due to an enhanced requirement of energy and reduced utilization of nutrients by patients, the recommended caloric intake lies between 120 to 150% of the normal daily allowance. Only a small number of CF patients are able to achieve this aim. In fact, children with CF are twice as likely to have mealtime problems as non CF-peers. Aims are the development of child centered dietary counseling and behavioral strategies for parents to support their children.

Work Group

  • Andrea Heinzmann, MD
  • Michael Barth (PhD, Clinical Psychologist)
  • Isolde Krug (Clinical Psychologist)

Contact

Andrea Heinzmann, MD
Professor, Head of Cystic Fibrosis outpatient department
E:andrea.heinzmann@uniklinik-freiburg.de
T: +49 (0)761 27043010
F: +49 (0)761 27044500

Medical Center – University of Freiburg
Center for Pediatrics and Adolescent Medicine
Mathildenstr. 1
79106 Freiburg
Germany

CARE-FAM-NET – CHILDREN AFFECTED BY RARE DISEASES AND THEIR FAMILIES – NETWORK

A disease is considered rare if it affects no more than 5 out of 10,000 people. But when considered together, rare diseases are surprisingly common: It is estimated that about two million children and adolescents in Germany live with a rare disease.

Affected families are often under considerable physical and mental strain, because providing ongoing care and support to the sick child can be exhausting. For example, research has shown that 30-40% percent of mothers become depressed or develop an anxiety disorder as a result of the considerable stress. Siblings also have an increased risk of behavioral disorders because they grow up in an environment defined by the care the family provides to their sick sibling.

This is where the consortium CARE-FAM-NET (Children affected by rare disease and their families – network) comes in. The project seeks to close the existing gap in psychosocial care for families with affected children and adolescents from birth to 21 years of age.

CARE-FAM-NET 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.

Two new approaches will be tested; these aim to improve both early diagnosis and early treatment of accompanying mental illnesses for all members of the family. We aim to recruit a total of 1,000 families of children with rare diseases to the project. The affected children and their relatives will receive individual psychosocial help (around 6-8 consultations over six months or an online consultation) as early as possible in the course of the child’s medical treatment. This will facilitate positive coping with the disease and avert the development of psychological  disorders.

The project is funded for three years with a total of approx. 7.6 million euros. If successful, the new forms of care will close a significant gap in care and improve the mental health and quality of life of children with a rare disease and their families.

Work Group

The CARE-FAM-NET consortium is led by Silke Wiegand-Grefe and Jonas Deneke (Universitätsklinikum Hamburg Eppendorf).

Freiburg’s involvement is led by Michael Barth and Ute Spiekerkötter at the Center for Pediatrics and Adolescent Medicine and Christian Fleischhaker at the Department of Child and Adolescent Psychiatry, Psychotherapy and Psychosomatics.

Funding

The CARE-FAM-NET project is funded by the Innovation Committee of the Federal Joint Committee (Innovationsausschuss beim Gemeinsamen Bundesausschuss (GB-A).

PEDIATRIC PALLIATIVE CARE

This recent joint project (Universities of Freiburg, Ulm, Tübingen, Heidlberg/Mannheim) focussed on the establishment of a state-wide research structure on the use and quality of care in specialised outpatient paediatric palliative medicine (Collaboration with Miriam van Buiren).

PEDIATRICS AND EARLY INTERVENTION

Objective: The aim of the project is the evaluation of the P.A.T.H. (Pediatric Attention To Help) intervention to network health care and child and youth welfare. Recent studies show that the transition of psycho-socially burdened families from pediatrics to early intervention is not yet sufficiently successful. The P.A.T.H. intervention was therefore developed with the aim of enabling paediatricians to better recognise family burdens and to transfer cases to early help. A comprehensive evaluation of this intervention is still pending.

Methodical procedure: The evaluation study implements a controlled mixed-method design. For this purpose, families, paediatricians and network partners in early intervention are interviewed. The sample for the quantitative survey comprises 800 families. For the quantitative survey, a total of 40 people from the various groups will be interviewed.

The evaluation will show empirically whether the P.A.T.H. intervention reaches more families, whether the intervention is accepted and whether it is cost effective. If these positive effects are proven, there is potential for a (nationwide) strengthening of the networking between the health care system and child and youth welfare services in order to better care for psychosocially burdened families and to alleviate strain on the public health system by enabling successful transition of families.

SELECTED RECENT PUBLICATIONS

  • Barth, M. Psychosozialer Hilfebedarf junger Familien- eine pädiatrische Aufgabe und Herausforderung. In: Autor: Hg.: Volker Mall, Friedrich Voigt, Nikolai H. Jung (Hrsg.): Aktuelle Fragen der Sozialpädiatrie Bd. 1: Wege zur Inklusion. Frühdiagnostik, Frühtherapie, Kindliche Sozialisation Lübeck: Schmidt-Römhild., 2014; 21-32.
  • Barth M. (2015) Die rekursive Herstellung von Normalität als handlungsleitende Rahmung der Arzt-Eltern-Interaktion in den ersten pädiatrischen Früherkennungsuntersuchungen. Z Soziol Erzieh Sozi, 35 (1): 39-52.
  • Belzer F, Ebel K, Hugenschmidt B, Fressle R, Barth M. (2015) Frühe Hilfen in der Kinderarztpraxis – ein Freiburger Modellprojekt Kinderärztliche Praxis, 86 (6): 362-368.
  • Wurm, M, Krebs,A, Doerfer, J, Otto, S, Deker, B, Gebhardt, K, Mötsch, SJ, Barth, M, Dirjak, C., Grossmann, C., Pfeiffer, S., Rädecke, S., Rosenbaum-Fabian, S, Schwab KO. (2017) Familienbezogene Adipositas-Prävention bei vier- bis siebenjährigen Kindern: Erste Ergebnisse des Schulungsprogramms »Zirkus Flitzebizz« Päd Praxis, 89: 48-60.