ReviewChildren (Basel, Switzerland)2022
Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.
Review in Children (Basel, Switzerland), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
40 citing papers in PubMed, 60 citations in OpenAlex.
- The Illness Narratives of Children and Young People With Spinal Muscular Atrophy: A Scoping Review.Journal of advanced nursing · 2026Article
- Diagnosis, treatment, and management recommendations for cleidocranial dysplasia: A modified Delphi panel.Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research · 2026Article
- The current state of Spanish language resources for patients in Alabama with rare genetic disease: qualitative expert stakeholder interviews.Journal of community genetics · 2026Article
- Structural Equation Modelling of Socioeconomic Status on Malnutrition Among Urban Preschoolers: Multi-Group Analysis of Hungary and Indonesia.International journal of environmental research and public health · 2026Article
- Performance of ChatGPT-4o in Providing Information on Pediatric Inborn Errors of Immunity: A Cross-Sectional Evaluation.Journal of clinical medicine · 2026Article
- 'If You Don't Fight for Yourself, No One Else Will': An In-Depth Interpretative Phenomenological Analysis of Rare Disorder Care Advocacy in Aotearoa New Zealand.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Social support and maternal caregiving burden in families of children with Angelman syndrome in China: the mediating role of self-stigma.BMC psychology · 2026Article
- Article
- Improving Lifelong Comprehensive Care Coordination in Nephropathic Cystinosis: Multidisciplinary Perspectives.Kidney international reports · 2026Review
- TikTok as a Platform for Patient Education and Health Information in Rare Genetic Diseases: Cross-Sectional Study.JMIR formative research · 2026Article
- Article
- Health-related Quality of Life among Children Living with Rare Diseases in China: a Nationwide Study.Applied research in quality of life · 2026Article
- Capability wellbeing of parents caring for children with rare diseases: a national cross-sectional study.BMC public health · 2025Article
- Exploration Into Lived Experiences of Multiple Sulfatase Deficiency-Affected Individuals and Their Families.Journal of child neurology · 2025Article
- Addressing psychosocial vulnerability in rare diseases: a call to action from a European expert consensus study.Orphanet journal of rare diseases · 2025Article
- A qualitative study of differences in palliative care in hospitals and traditional home-based care in Cameroon.BMC palliative care · 2025Article
- Nursing's Role in Advancing Care for Rare Genetic Diseases.The Nursing clinics of North America · 2025Review
- Understaffed Home Nursing and Wellbeing of Families of Children with Medical Complexity.Children (Basel, Switzerland) · 2025Article
- Trajectories of depression and anxiety in adults with rare disorders across 13 months during the COVID-19 pandemic.Orphanet journal of rare diseases · 2025Article
- Systematic Scoping Review of Socioeconomic Burden and Associated Psychosocial Impact in Patients With Rare Kidney Diseases and Their Caregivers.Kidney international reports · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their homes and family lives. We searched the literature on psychosocial considerations for children with rare diseases in PubMed and Google Scholar in English until 15 April 2022, excluding publications unavailable in full text. The results examine RD and their psychosocial ramifications for children, families, and the healthcare system. The domains of the home, school, community, and medical care are addressed, as are the implications of RD management as children transition to adulthood. Matters of relevant healthcare, public policies, and more sophisticated translational research that addresses the intersectionality of identities among RD are proposed. Recommendations for interventions and supportive care in the aforementioned domains are provided while emphasizing calls to action for families, clinicians, investigators, and advocacy agents as we work toward establishing evidence-based care for children with RD.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.