ArticleJournal of genetic counseling2013
Hoping to live a "normal" life whilst living with unpredictable health and fear of death: impact of cystic fibrosis on young adults.
Article in Journal of genetic counseling, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 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
10 citing papers in PubMed, 39 citations in OpenAlex.
- 'Struggling to participate in everyday life': emerging adults' experiences of living with long-term health challenges.BMC public health · 2023Article
- Lived experiences of individuals with cystic fibrosis on CFTR-modulators.BMC pulmonary medicine · 2022Article
- Genetic literacy and psychological adaptation in adolescents with genetic diseasesRevista de la Facultad de Ciencias Medicas (Cordoba, Argentina) · 2021Article
- The impact of COVID-19 shielding on the wellbeing, mental health and treatment adherence of adults with cystic fibrosis.Future healthcare journal · 2021Article
- An Exploration Into Knowledge, Attitudes, and Beliefs Towards Risky Health Behaviours in a Paediatric Cystic Fibrosis Population.Clinical medicine insights. Circulatory, respiratory and pulmonary medicine · 2019Article
- "Will she live a long happy life?" Parents' concerns for their children with Fontan circulation.International journal of cardiology. Heart & vasculature · 2018Article
- Living with cystic fibrosis - a qualitative study of a life coaching intervention.Patient preference and adherence · 2018Article
- Current characteristics, challenges and coping strategies of young people with cystic fibrosis as they transition to adulthood.Clinical medicine (London, England) · 2017Article
- An exploration of how young people and parents use online support in the context of living with cystic fibrosis.Health expectations : an international journal of public participation in health care and health policy · 2016Article
- Exploring the lived experiences of individuals with cystic fibrosis after the implementation of elexacaftor/tezacaftor/ivacaftor for treatment.Therapeutic advances in respiratory 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 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This study aimed to explore the hopes and fears of young adults with cystic fibrosis (CF). Fifteen young adults with CF, aged 18-29, were interviewed about their hopes and fears using a grounded theory approach. Five themes were identified during the analysis: perceptions of living with unpredictable health and fear of death and dying; hopes for normality; hopes for a normal relationship and/or marriage; hopes for having children; and hopes for a normal work life. Participants feared the unpredictable nature of CF and the suffering that they believed they would have to endure due to ill health before premature death. Despite their fears, participants hoped to live a "normal" life by achieving their hopes of having long-lasting relationships, having children and pursuing a career. The findings highlight the need to help alleviate the fears of young adults with CF and to enable them to plan to achieve their hopes, hence giving them a sense of control over their condition.
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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.