ArticleOrphanet journal of rare diseases2021
Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany.
Article in Orphanet journal of rare diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06729554 (Education & Care in RARE - Efficacy of Targeted Psychoeducational Intervention to Improve Knowledge About Rare Diseases and to Promote Mental Health Among Pediatric Rare Disease Patients), which is not on this map. Cited by 17 papers.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Education & Care in RARE - Efficacy of Targeted Psychoeducational Intervention to Improve Knowledge About Rare Diseases and to Promote Mental Health Among Pediatric Rare Disease Patients
Who cites it
17 citing papers in PubMed, 22 citations in OpenAlex.
- The social construction of the "good doctor": Expectations of physicians among adults with NF1.Journal of community genetics · 2026Article
- Lived experiences in rare genetic diseases: a narrative synthesis of 317 qualitative studies (2004-2024).European journal of human genetics : EJHG · 2026Review
- Health-related quality of life of children and adolescents with the most common ectodermal dysplasia: focus group study and item development for a condition-specific patient-reported outcome measure.Orphanet journal of rare diseases · 2026Article
- Prevalence of avoidant/restrictive food intake disorder in children and adolescents with rare diseases.Orphanet journal of rare diseases · 2026Observational
- Adams-Oliver Syndrome: A Comprehensive Literature Review of Clinical, Nutritional, Genetic, and Molecular Aspects with Nursing Care Considerations.International journal of molecular sciences · 2025Review
- Quality of life among children and young adults with rare diseases. A parental perspective.European journal of pediatrics · 2025Article
- Perception of psychosocial burden in mothers of children with rare pediatric neurological diseases.Scientific reports · 2025Article
- (Not) "just your nature". Diagnostic journeys of adults with neurofibromatosis type 1 in Poland.Frontiers in genetics · 2025Article
- Quality of life and caregiving burden associated with parenting a person with Duchenne/Becker muscular dystrophy in Poland.Orphanet journal of rare diseases · 2024Article
- Psycho-Emotional Aspects of Pregnant Women Diagnosed with a Rare Disease: A Systematic Review.Nursing reports (Pavia, Italy) · 2024Review
- Digital Psychosocial Follow-up for Childhood Critical Illness Survivors: A Qualitative Interview Study on Health Professionals' Perspectives.Scandinavian journal of child and adolescent psychiatry and psychology · 2024Article
- Living with a rare disease - experiences and needs in pediatric patients and their parents.Orphanet journal of rare diseases · 2023Article
- [Measures for optimal access to psychosocial care of children with rare diseases and their families].Innere Medizin (Heidelberg, Germany) · 2023Review
- Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.Children (Basel, Switzerland) · 2022Review
- Factors of family impact in a Swedish-German cohort of children born with esophageal atresia.Orphanet journal of rare diseases · 2022Article
- Dohsa-hou for unexplained regression in Down syndrome in a 19-year-old man: A case report.Clinical case reports · 2022Article
- Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases.Children (Basel, Switzerland) · 2022Article
Corrections and comments
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Authors and funding
9 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundRare diseases occur in early childhood and have a major impact on the quality of life of the affected children and their families. Their need for psychosocial support is considerable, but psychosocial care in Germany is still far from being part of routine care. We interviewed experts to explore how they describe the current pathways to psychosocial care, potential barriers and problems, and possibilities for improvements.
resultsWe conducted telephone interviews with 49 experts working in somatic medicine, psychosocial medicine, patient organizations, child and youth welfare, and the educational sector. Interviews were transcribed and analyzed using focused interview analysis. Results document ways of access and facilities used by families to receive psychosocial care. The barriers described by the experts can be summarized on three levels: the family-organizational level, the family-psycho-emotional level, and finally, the structural system level. Accordingly, suggestions for improvement were directed at these levels.
conclusionBased on the experts' perspectives, there is ample room for improvement to facilitate the pathways to psychosocial care for children with rare diseases and their families. Unfortunately, there seems to be a long way to go before psychosocial care will be routinely provided. However, awareness of the issue among different professional groups is high, and numerous suggestions for improvement were made, including continuous expansion of services to all family members, strengthening of low-threshold services, simplifying application procedures, and more cooperation between different funding agencies as well as between different care providers.
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Registered trials
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