Breaking bad news, the diagnosis of cystic fibrosis in childhood

Trudy Havermans, Jessica Tack, Anneke Vertommen, Marijke Proesmans, Kris de Boeck
Journal of Cystic Fibrosis: Official Journal of the European Cystic Fibrosis Society 2015, 14 (4): 540-6

BACKGROUND: The day parents are told their child has cystic fibrosis (CF) is imprinted in their memory. Parents often show strong emotions (e.g. shock, anxiety); they need to cope with bad news and restructure their lives taking into account CF.

AIMS: The aims of this study are (1) to explore how parents recall circumstances of the CF diagnosis and the information they received and (2) to investigate their current coping styles.

METHODS: Parents (n=38) of 20 children (diagnosed during the past 5 years) were interviewed using a semi-structured interview. Coping was assessed using the Utrecht Coping List. The association between coping and time since diagnosis/severity of illness was investigated.

RESULTS: Fifteen parents first heard the term 'CF' from their local pediatrician or GP. All were informed in detail by the CF specialist. All parents recalled specifics about the information, the attitude of the doctor, their thoughts and emotions. Most parents were satisfied with the content and manner in which they had received information. Nineteen appreciated the doctor showing some emotions during the talks. One couple criticized the doctor for not showing emotions. Parents reported higher use (than normative scores) of the active coping style 'social support seeking' and the accommodative coping styles 'palliative reaction pattern' and 'comforting cognitions'. Perception of severity of illness was associated with higher scores on palliative coping.

CONCLUSIONS: This study shows the importance of physicians and CF teams to tailor the way of providing bad news to parents' needs and preferences. It is important to help and encourage parents to use active or accommodative coping strategies. The diagnosis is the starting point of a long-term relationship. 'Doing things well from the start' helps families to learn to live with CF and treatment.

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