The role of informal carers in the diagnosis of heart failure: a secondary qualitative analysis
Heart failure (HF) is a common condition, particularly in older people, which causes symptoms such as breathlessness, fatigue, and oedema. Patients with HF may require support from close relatives to carry out daily activities. These family members may become informal carers, often without being aware of this description of their role. Previous research has shown the importance of informal carers in supporting people with established HF but their influence during the diagnostic process is unknown. The aim of this study was to explore the role of informal carers in the HF diagnostic pathway.
Secondary analysis of qualitative interviews with sixteen participants who had a recent diagnosis of HF. Participants were originally recruited from a HF outpatient clinic and had received a new diagnosis of HF within the last 12 months. Semi-structured interviews were conducted at the participant's home. Interviews were recorded, transcribed and the main findings previously reported (Taylor et al. From breathless to failure: symptom onset and diagnostic meaning in patients with HF - a qualitative study. BMJ Open 2017;7(3):e013648). Relatives were present for ten of the sixteen interviews and their input was encouraged. In this study, interview transcripts were re-analysed using the Framework method for themes pertaining to informal carers and how they were involved in the diagnostic process.
Informal carers were involved in noticing symptoms, such as participants becoming breathless. In some cases, they initially colluded with participants in normalising symptoms but over time, when symptoms failed to resolve or got worse, carers became concerned and encouraged participants to seek medical help. Children of participants more often initiated help-seeking behaviour than their spouse or partner. During the diagnostic process, carers coordinated participants' healthcare through advocacy and organisation. Carers were keen to be informed about the participant's diagnosis and they had as good an understanding of HF as participants. However, both participants and carers struggled to understand some aspects of the term 'heart failure'.
Carers play a crucial role in HF diagnosis, particularly in initiating contact with healthcare services. Partners and grown-up children should be empowered to encourage people with HF symptoms to seek medical help. Increased awareness of HF could mean informal carers are more likely to notice symptoms. The crucial role of carers in supporting the patients route to diagnosis should be incorporated into future care pathways. The needs and challenges faced by carers themselves during the HF diagnostic pathway should be explored in further research.