ArticleActa paediatrica (Oslo, Norway : 1992)2022
Being affiliated to a cystic fibrosis centre is important for parents' everyday life.
Article in Acta paediatrica (Oslo, Norway : 1992), 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 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
2 citing papers in PubMed.
- Parental experience and information needs following a positive newborn screening test-based neonatal diagnosis of a chronic condition: an integrative review.International journal of nursing studies advances · 2026Review
- Being affiliated to a cystic fibrosis centre is important for parents' everyday life.Acta paediatrica (Oslo, Norway : 1992) · 2022Article
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.
Funding
Abstract
aimNewborn screening represents a paradigm shift in the treatment of children with cystic fibrosis. This study aimed to explore parents' everyday life experiences from the time of diagnosis and in the following months.
methodsNarrative interviews were conducted at Aarhus University Hospital, Denmark, with parents (mothers = 15 and fathers =14) of 15 term-born children with a mean age of 2 weeks (range 1-3.5 weeks). Participant observation and field notes were used to complement interview data. The analysis was inspired by Kvale and Brinkmann.
resultsThree themes were identified. First, on diagnosis, a profound difference in parents' experience was observed depending on whether the diagnosis was communicated by a medical doctor from the cystic fibrosis team or by a paediatrician from another hospital. Second, during the initial meetings and subsequent relationships with the cystic fibrosis team, the knowledge and calmness exhibited by the doctors and nurses were very valuable. Third, regarding everyday life after the diagnosis, most parents described experiencing anxiety and concern for their child's future.
conclusionThe parents' experiences highlighted essential elements that should be implemented to optimise the patient care pathway as they are fundamental to parents' ability to cope with the new living conditions.
Indexed as
Identifiers
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.