ArticleJournal of applied communication research : JACR2017
Living with a Rare Health Condition: The Influence of a Support Community and Public Stigma on Communication, Stress, and Available Support.
Article in Journal of applied communication research : JACR, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 101 citations in OpenAlex.
- Public perspectives on healthcare professional-directed communication of hereditary genetic risks: a mixed-method systematic review.European journal of human genetics : EJHG · 2026Pooled it
- Transition Care for Young People with Rare Bone and Mineral Conditions: A Scoping Review.Advances in therapy · 2026Article
- For Me, Quality of Life Is When I Get Through the Day Without Thinking: I Won't Make It: A Participatory Qualitative Study of Health-Related Quality of Life in Rare Liver Diseases.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
- Experiences of stigmatization and its impacts among individuals living with hereditary diseases and family members in Portugal: an exploratory study.Journal of community genetics · 2025Article
- "…They were just treating her Symptom by Symptom": maternal experiences of having a child with spinal muscular atrophy in Ghana.BMC palliative care · 2025Article
- Exploring Quality of Life in Adults Living With Late-onset Pompe Disease: A Combined Quantitative and Qualitative Analysis of Patient Perceptions from Australia, France, Italy, and the Netherlands.Journal of health economics and outcomes research · 2025Article
- Quality of life and unmet needs in patients with fabry disease: a qualitative study.Orphanet journal of rare diseases · 2024Review
- The value of genomic testing in severe childhood speech disorders.European journal of human genetics : EJHG · 2024Article
- 'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Beyond the clinical context: the process of losing oneself living with Huntington's disease.Orphanet journal of rare diseases · 2022Article
- Rare disease emerging as a global public health priority.Frontiers in public health · 2022Review
- Quality of life and its contributors among adults with late-onset Pompe disease in China.Orphanet journal of rare diseases · 2021Article
- Negative Emotion Arousal and Altruism Promoting of Online Public Stigmatization on COVID-19 Pandemic.Frontiers in psychology · 2021Article
- Pain symptomology, functional impact, and treatment of people with Neurofibromatosis type 1.Journal of pain research · 2019Review
- Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland.Frontiers in public health · 2019Article
- Spirituality, Illness Unpredictability, and Math Anxiety Effects on Negative Affect and Affect-Management Coping for Individuals Diagnosed with Alpha-1 Antitrypsin Deficiency.Health communication · 2018Article
- From care to cure: a patient engagement framework for rare disease and orphan drug research.Therapeutic advances in rare diseaseArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
Abstract
People affected by rare diseases often have limited coping resources and sometimes face stigma. They build communities with others who share their conditions, but not all members may benefit from these communities. This study investigated how adults with a rare genetic health condition (Alpha-1 antitrypsin deficiency; AATD) think about both the Alpha-1 community and public stigma about AATD, and how these cognitions were associated with their communication responses and well-being. The results showed that people with AATD encountered stigmatization from various sources, including family, employers, healthcare providers, and insurance companies. Stronger public stigma predicted more secrecy, more stress, and less available support. Stronger group identification with the Alpha-1 community predicted less secrecy; stronger group activism predicted more available support and more communication to challenge stigmatizers. Post-hoc analyses showed significant interactions between public stigma and group cognitions on communication to challenge stigmatizers. Practical implications for bolstering communities to improve the well-being of people with rare diseases were discussed.
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What OpenQuestion holds
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.