Being affiliated to a cystic fibrosis centre is important for parents' everyday life
Pia Bonde Nielsen1, Hanne Vebert Olesen1, Claus Sixtus Jensen1,2,3
1Department of Paediatrics and Adolescent Medicine, Aarhus University Hospital, Aarhus, Denmark.
Insights
Parents of children with cystic fibrosis (CF) experience anxiety post-diagnosis. Effective communication from CF teams and healthcare providers is crucial for coping with new daily life challenges.
Area of Science:
- Pediatrics
- Genetics
- Psychology
Background:
- Newborn screening has transformed cystic fibrosis (CF) care.
- Understanding parental experiences post-diagnosis is vital for optimizing care pathways.
Purpose of the Study:
- To explore parents' lived experiences following a cystic fibrosis diagnosis in their child.
- To identify key factors influencing parental coping and adjustment.
Main Methods:
- Qualitative study using narrative interviews with 29 parents (15 mothers, 14 fathers) of 15 infants.
- Conducted at Aarhus University Hospital, Denmark.
- Participant observation and field notes supplemented interview data.
Main Results:
- Parental experiences varied based on who delivered the diagnosis (CF team vs. general pediatrician).
- Knowledge and calmness from the CF team were highly valued.
- Parents reported significant anxiety and concern for their child's future.
Conclusions:
- Parental experiences underscore the need for optimized communication and support during the diagnostic process.
- Effective care pathways must address parents' emotional needs for successful coping.
Aim:
Newborn 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.
Methods:
Narrative 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.
Results:
Three 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.
Conclusion:
The 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.
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