The role of informal carers in the diagnostic process of heart failure: a secondary qualitative analysis

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Background: Heart failure (HF) is a common clinical syndrome, particularly in older people, and symptoms can
develop gradually. The aim of this study was to explore the role of informal carers in the HF diagnostic process.

Methods: Secondary analysis of qualitative interviews with 16 participants with a new diagnosis of HF. Original
interviews were conducted in the participant’s home, with carers present in some cases. Interview transcripts were
re-analysed using the Framework Method for themes pertaining to informal carers and how they were involved in
the diagnostic process.

Results: Informal carers often noticed symptoms, such as breathlessness, before participants. In some cases, carers
colluded with participants in normalising symptoms but over time, when symptoms failed to resolve or got worse,
they encouraged participants to seek medical help. Adult children of participants commonly initiated help-seeking
behaviour. During the diagnostic process, carers coordinated participants’ healthcare through advocacy and
organisation. Carers were keen to be informed about the diagnosis, but both participants and carers struggled to
understand some aspects of the term ‘heart failure’.

Conclusions: Carers play a crucial role in HF diagnosis, particularly in initiating contact with healthcare services, and
should be empowered to encourage people with HF symptoms to seek medical help. Improving public awareness
of HF could mean informal carers are more likely to notice symptoms. The important role of carers in supporting
the patient’s route to diagnosis should be incorporated into future care pathways and explored in further research.


Original languageEnglish
Article number92
Number of pages7
JournalBMC Cardiovascular Disorders
Publication statusPublished - 23 Apr 2019


  • Heart failure, Diagnosis, Carer, Symptoms, Awareness