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ORIGINAL RESEARCH article

Front. Public Health

Sec. Public Mental Health

The Family Stress Model in families of children with rare diseases: A cross-sectional multilevel path analysis for understanding family dynamics

Provisionally accepted
Johannes  BoettcherJohannes Boettcher*Sarah  HohmannSarah HohmannAnne  DaubmannAnne DaubmannJonas  DeneckeJonas DeneckeAnia  C MuntauAnia C MuntauSilke  Wiegand-GrefeSilke Wiegand-GrefeHolger  ZapfHolger Zapf
  • University Medical Center Hamburg-Eppendorf, Hamburg, Germany

The final, formatted version of the article will be published soon.

Background: Theoretical frameworks, such as the Family Stress Model, have been evaluated in various contexts; however, there is a lack of large-scale studies specifically focusing on families of children with rare diseases. Objective: To examine the applicability of the Family Stress model within a large-scale sample of families of children with rare diseases. Methods: The potential predictors of children's mental health in a multicenter study of n = 872 parents of children with rare diseases were investigated. Factors contributing to children's mental health within the Family Stress Model were investigated via cross-sectional multilevel path model. Results: Relevant associations were found among all variables. The multilevel model based on our data only partially supported the Family Stress Model. In our model, the quality of the parental relationship was not relevantly associated with stress and depressive symptoms. Conclusion: Our findings show that the Family Stress Model is not supported entirely in a multilevel analysis of families of children with rare diseases. Nevertheless, the results underscore the importance of focusing on alleviating parental stress, which could diminish intra-family psychopathology. Trial registration: ClinicalTrials.gov (NCT04382820).

Keywords: Family stress model, Rare Diseases, Children, Mental Health, multilevel path analysis

Received: 26 Sep 2025; Accepted: 28 Oct 2025.

Copyright: © 2025 Boettcher, Hohmann, Daubmann, Denecke, Muntau, Wiegand-Grefe and Zapf. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Johannes Boettcher, j.boettcher@uke.de

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