ArticleJournal of genetic counseling2017
Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition.
Article in Journal of genetic counseling, 2017. 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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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.
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Who cites it
20 citing papers in PubMed, 47 citations in OpenAlex.
- Prevalence and Predictors of Stress Among Caregivers of Children with Developmental Disorders.Journal of autism and developmental disorders · 2026Article
- "I don't grieve as much as I used to": A qualitative study on parents of children with rare and undiagnosed conditions navigating grief in the context of uncertainty.Journal of genetic counseling · 2025Article
- Anxiety and quality-of-life for parents of children with undiagnosed rare conditions: A multi-site quantitative survey study.Journal of genetic counseling · 2025Article
- The case for including proteomics in routine diagnostic practice for rare disease.Genome medicine · 2025Article
- Uncertainties experienced by parents of children diagnosed with severe combined immunodeficiency through newborn screening.European journal of human genetics : EJHG · 2024Article
- The linguistic and construct validity of the Malay version of the Coping Self-Efficacy Scale (CSES-My): Evidence from a sample of Malaysian parents of children with leukemia or lymphoma.Belitung nursing journal · 2024Article
- Perceived control is significantly associated with psychological adaptation in individuals with known or suspected inborn errors of immunity.Journal of community genetics · 2023Article
- Participation in a national diagnostic research study: assessing the patient experience.Orphanet journal of rare diseases · 2023Article
- Psychometric Properties of the Portuguese Version of the Iceland-Family Perceived Support Questionnaire in Parents of Children and Adolescents with Chronic Condition.International journal of environmental research and public health · 2022Article
- Paternal adaptation and related factors in Iranian fathers.JBRA assisted reproduction · 2022Article
- "Doctors can read about it, they can know about it, but they've never lived with it": How parents use social media throughout the diagnostic odyssey.Journal of genetic counseling · 2021Article
- How do parents deal with their children's chronic kidney disease? A qualitative study for identifying factors related to parent's adaptation.BMC nephrology · 2020Article
- Determining the Topic Evolution and Sentiment Polarity for Albinism in a Chinese Online Health Community: Machine Learning and Social Network Analysis.JMIR medical informatics · 2020Article
- Genetic Counseling and Genome Sequencing in Pediatric Rare Disease.Cold Spring Harbor perspectives in medicine · 2020Review
- "Before Facebook and before social media…we did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process.Journal of community genetics · 2019Article
- Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy.Clinical genetics · 2019Article
- Cases from the Undiagnosed Diseases Network: The continued value of counseling skills in a new genomic era.Journal of genetic counseling · 2019Article
- Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network.Journal of genetic counseling · 2018Article
- Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?Journal of genetic counseling · 2018Article
- Stress, coping, and positive aspects of caregiving among caregivers of children with rare disease.Psychology & healthArticle
Corrections and comments
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Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
Abstract
Little is known about the adaptive process and experiences of parents raising a child with an undiagnosed medical condition. The present study aims to assess how uncertainty, hope, social support, and coping efficacy contributes to adaptation among parents of children with an undiagnosed medical condition. Sixty-two parents of child affected by an undiagnosed medical condition for at least two years completed an electronically self-administered survey. Descriptive analysis suggested parents in this population had significantly lower adaptation scores when compared to other parents of children with undiagnosed medical conditions, and parents of children with a diagnosed intellectual and/or physical disability. Similarly, parents in this population had significantly lower hope, perceived social support and coping efficacy when compared to parents of children with a diagnosed medical condition. Multiple linear regression was used to identify relationships between independent variables and domains of adaptation. Positive stress response was negatively associated with emotional support (B = -0.045, p ≤ 0.05), and positively associated with coping efficacy (B = 0.009, p ≤ 0.05). Adaptive self-esteem was negatively associated with uncertainty towards one's social support (B = -0.248, p ≤ 0.05), and positively associated with coping efficacy (B = 0.007, p ≤ 0.05). Adaptive social integration was negatively associated with uncertainty towards one's social support (B-0.273, p ≤ 0.05), and positively associated with uncertainty towards child's health (B = 0.323, p ≤ 0.001), and affectionate support (B = 0.110, p ≤ 0.001). Finally, adaptive spiritual wellbeing was negatively associated with uncertainty towards one's family (B = -0.221, p ≤ 0.05). Findings from this study have highlighted the areas where parents believed additional support was required, and provided insight into factors that contribute to parental adaptation.
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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.