ArticleOrphanet journal of rare diseases2021
Evaluation of the parents' anxiety levels before and after the diagnosis of their child with a rare genetic disease: the necessity of psychological support.
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. Cited by 20 papers.
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Who cites it
20 citing papers in PubMed, 29 citations in OpenAlex.
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- Lived experiences of parents of children with genetic and neurodevelopmental disorders accessing genetic services in Rwanda: barriers and enablers.Journal of community genetics · 2026Article
- Exploring the Clinical and Psychosocial Impact of Genetic Diagnosis in Congenital Hearing Loss: A Comparative Study Between Syndromic and Non-Syndromic Conditions.Children (Basel, Switzerland) · 2026Article
- Coping with the challenges of caregiving: A qualitative exploration of the experiences of family caregivers of children with rare diseases in South Africa.Journal of genetic counseling · 2026Article
- Health care, social, educational, and employment needs of individuals affected by rare diseases and their families in Catalonia, Spain.Orphanet journal of rare diseases · 2026Article
- Health care providers' perceptions of screening for risk of type 1 diabetes in newborns using genetic risk scores.Journal of community genetics · 2026Article
- Quality of Life of and Its Predictors Among Caregivers of Children With Developmental Disorders.Journal of autism and developmental disorders · 2026Article
- The effect of burden and loneliness on depression in female caregivers through purpose in life.BMC public health · 2025Article
- More than a Diagnosis: How Prenatal Identification of Cantú Syndrome Transformed a Family's Medical Narrative.Journal of clinical medicine · 2025Article
- Exploring the experience of communication in healthcare settings with parents of children with a rare genetic condition: "It's the more negative ones that you remember".Journal of genetic counseling · 2025Article
- Parents' perspectives on expanded newborn genomic screening in Abu Dhabi, United Arab Emirates.Human genomics · 2025Article
- Stress and Quality of Life of Parents of Children With POLR3-Related Leukodystrophy: A Cross-Sectional Pilot Study.Journal of child neurology · 2025Article
- Parents' experiences of parenting a child with profound intellectual and multiple disabilities in France: A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Large-scale evaluation of outcomes after a genetic diagnosis in children with severe developmental disorders.Genetics in medicine open · 2024Article
- Understanding Challenges of Genetic Testing on Neuromuscular Disorders from the Parental Lens.Journal of personalized medicine · 2023Article
- A Qualitative Research Study of Experiences and Perceptions of People Living with Insulin Resistance Syndrome or Lipoatrophic Diabetes in Japan.Diabetes therapy : research, treatment and education of diabetes and related disorders · 2023Article
- Article
- Current situation and influencing factors of disease uncertainty in parents of children with Sturge‒Weber syndrome: a retrospective study.BMC pediatrics · 2023Article
- Multidimensional Family-Centred Early Intervention in Children with Hearing Loss: A Conceptual Model.Journal of clinical medicine · 2022Review
- Obstacles and expectations of rare disease patients and their families in Türkiye: ISTisNA project survey results.Frontiers in public health · 2022Article
Corrections and comments
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Authors and funding
5 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe diagnosis of the rare genetic diseases has great importance in treating multisystemic conditions, preventing potential complications, and estimating disease risk for family members. The duration of obtaining genetic test results is varies. The demand to learn the diagnosis of a possible untreatable illness involves a struggle between uncertainty and a lifetime chronic disease. The current uncertainty of their child's condition and the long wait for a diagnosis may increase the parents' anxiety level and cause difficulties in the continuation of diagnostic procedures in some families. This study aimed to investigate the prediagnosis and postdiagnosis anxiety levels of parents who have a child with a rare genetic disease.
methodThe parents in this study, mothers or fathers, admitted their children to the Bezmialem Vakıf University Medical Genetics Clinic due to a suspected rare genetic disease (n = 40). Researchers created "The Sociodemographic Questionnaire" and used it to analyze the parents' sociodemographic status. In addition, they used the State-Trait Anxiety Inventory (STAI) to determine the anxiety levels of the parents.
resultsThe state anxiety levels of parents decreased significantly after learning the diagnosis. However, there was no statistically significant decrease observed in trait anxiety levels.
conclusionData from this study revealed that informing parents about their child's disease and properly explaining to them the expected difficulties might help to reduce their anxiety levels. Psychological support for parents is necessary to reduce their long-term stress, thus increasing the patient's compliance with treatment.
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