Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000–2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle–Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child’s rare disease. We discuss insights into existing research gaps and improvements for subsequent work.

(1) Background: Health-related quality of life (HRQoL) is frequently reduced in children of parents with a mental illness (COPMI). Child self- and parent proxy-ratings vary with raters’ characteristics and facets of HRQoL. This study aimed at analyzing risk and protective factors associated with HRQoL in COPMI, and at examining the magnitude, direction, and predictors of child–parent agreement. (2) Methods: Analyses were based on baseline data of the German CHIMPS (children of parents with a mental illness) project with n = 134 parents diagnosed with mental illness and n = 198 children and adolescents aged 8 to 18 years. (3) Results: Both children and parents reported significantly lower HRQoL than the reference population, particularly for the child’s physical and psychological well-being. Parents’ proxy-report indicated a lower HRQoL than the children’s self-report. Child and parental psychopathology, social support, and the child’s age significantly predicted HRQoL. Interrater agreement was satisfactory and better for observable aspects like physical well-being and school environment. The child’s gender-identity and mental health significantly predicted child–parent agreement. (4) Conclusions: Parental psychopathology significantly reduces children’s HRQoL. Interventions should promote resilience in children by targeting risk and protective factors. Child–parent agreement emphasizes the need to obtain both self- and proxy-reports, whenever possible.

Children of mentally ill parents represent a particularly vulnerable risk group for the development of mental illness. This study examines whether there is a predictive association between children’s psychiatric symptomatology and (1) the clinical diagnosis according to the International Statistical Classification of Diseases and Related Health Problems (ICD-10) of their mentally ill parent as well as (2) to families both parents showing psychiatric symptoms. The study is part of the multicenter controlled trial project “Children of Mentally Ill Parents” (CHIMPS). For this purpose, the psychiatric symptomatology of the mentally ill parent (N = 196) and his or her partner (N = 134) as well as the psychiatric symptomatology of their children aged 4 to 18 years (N = 290) was measured using clinical rated ICD-10-diagnosis, self-rated Brief Symptom Inventory (BSI), and Child Behavior Checklist (CBCL). Using multilevel analyses, the severity of the parental psychiatric symptomatology (BSI) was identified as a significant predictor of children’s psychiatric symptomatology (CBCL). Children of parents with a personality disorder (ICD-10) were not more affected than children of parents with another ICD-10-diagnosis. However, children with two parents showing psychiatric symptoms (CBCL) were significantly more affected than children with one mentally ill parent. The results of this study support the well-known view that parental mental illness is a risk factor for children’s psychiatric symptoms. Therefore, increased support, especially in high-risk families, both parents having psychiatric symptoms, is highly necessary and should be implemented in the future psychotherapeutic family care.

Background: In Germany, approximately three million children under the age of eighteen have a mentally ill parent. These children are at an increased risk of developing a mental illness themselves (1) as well as a physical illness (2). While research has identified numerous evidence-based family-oriented interventions, little is known about how to implement such interventions effectively and efficiently in clinical practice in Germany. This implementation study (ci-chimps) evaluates three clinical implementation projects with three different implementation interventions for the optimal implementation of the tailored family-oriented preventive and therapeutic interventions in the CHIMPS-NET (children of mentally ill parents—research network) with an implementation model for children of mentally ill parents. Methods: A two-group randomized controlled multicenter trial will examine changes in family-oriented practice and aspects of implementation at baseline as well as at 12- and 24-months follow-up. The CHIMPS-Network consists of 20 clinical centers. The centers in the intervention group receive the support of all of the three implementation interventions: (1) optimal pathways to care, (2) education and a training program for professionals, and (3) systematic screening for children. The centers in the control group do not receive this specific implementation support. Discussion: While we know that children of mentally ill parents are an important target group to be addressed by preventive and therapeutic interventions, there is often a lack of structured implementation of family-oriented interventions in clinical practice in Germany. Using a randomized controlled multicenter trial design with a large and wide-ranging sample (clinics for adult psychiatry and clinics for child and adolescent psychiatry, university clinics and clinics at the real health care) will provide a robust understanding of implementing family-oriented changes in German clinical practice. Trial Registration: The CHIMPS-NET-study was registered with the German Clinical Trials Register on 2019-12-19 (DRKS00020380) and with Clinical Trials on 2020-4-30 (NCT04369625), the ci-chimps-study was registered with the German Clinical Trials Register (DRKS00026217) on 2021-08-27, the Clinical Trials registration is in review process.

Zusammenfassung: Kinder psychisch kranker Eltern sind als Risikogruppe für die Entwicklung eigener Auffälligkeiten bekannt. Gleichwohl weisen viele Unterstützungsangebote einen befristeten Projektcharakter auf, und es ist noch keine familienorientierte Regelversorgung für Kinder und Jugendliche mit psychisch erkrankten Eltern in Deutschland etabliert. Am Beispiel des Verbunds „Children of mentally ill parents – network“ (CHIMPS-NET) wird dargestellt, wie sich neue Versorgungsformen mit den Möglichkeiten des Innovationsfonds des Gemeinsamen Bundesausschusses (GB-A) in die Versorgung implementieren lassen. Das systematische Implementierungsmodell des Verbunds, basierend auf Arbeiten aus Australien und Norwegen, wird vorgestellt. Nach der Implementierung und bei erfolgreicher Evaluation ist eine Übernahme der bedarfsorientierten, familienorientierten Versorgungsformen des Verbunds in die regelhafte Versorgung geplant.

Wir haben in Deutschland ein sehr weit entwickeltes und hoch spezialisiertes Versorgungssystem. Aber: Es krankt daran, dass im Fokus aller Versorgungssysteme ausschließlich individuumszentriert gedacht wird. Hoffnung auf Besserung legen viele Behandelnde in den Innovationsfonds des Gemeinsamen Bundesausschusses.