Summary
In this analysis, it is clear that both people with a diagnosis of HF and their carers perceive the carer role to be important in the process of diagnosis of HF for all participants. Carers noticed and responded to symptoms, even when the participant themselves did not realise anything was wrong. The proximity of the relationship of the carer to the participant had an impact on the nature of this response, in terms of whether noticing symptoms resulted in normalization of symptoms or sanctioning of help seeking: for instance, adult children who were less proximal were often reported to push for the participant to seek medical help promptly when they noticed significant deterioration, while spouses were more likely to initially normalise symptoms as normal signs of ageing. Once help was sought, carers supported the participant through the diagnostic journey emotionally and practically and were at least as knowledgeable as the participant regarding the diagnosis, although understanding of some aspects of HF was limited. Several carers were actively involved in organising and co-ordinating the participants’ professional care.
Strengths and limitations
Several studies have examined the experience of informal carers of patients with established HF, but this study is unique in focusing on the role of carers before and during the HF diagnostic process. The data offer an insight into the influence informal carers had at key stages of the diagnostic journey. The original purpose of the interviews was to gain an understanding of patient experiences during this period, and this secondary analysis describes the ways that the role of carers was understood by the families involved.
Secondary analysis of any existing dataset has limitations but can still be useful to inform further research and policy [18]. The aim of the original study was to explore the patient experience and recruited only people with a new diagnosis of HF. Carers were present during participant interviews in some cases but separate interviews with carers alone were not part of the design. The study did not explore whether relatives would have identified themselves as informal carers or if the participants would have identified them as their carers. However, the role that relatives played in the participants’ lives resembled the accepted definition of an informal carer: anyone who cares, unpaid, for a friend or family member who due to illness cannot cope without support [19]. A further limitation is that carers were not present at all interviews and we do not know whether data saturation, for the purposes of this study, occurred. The topic guide was appropriately structured to allow the participant to describe freely factors that were important in the diagnostic process and the importance of relatives as informal carers was evident in almost all interviews. The contribution of carers present during interviews was encouraged. This secondary analysis has allowed exploration of the role of carers from an existing dataset but did not allow the deep and thorough approach advocated by Silverman to the conduct and analysis of an interview study specifically recruiting carers [20]. A further study, with the aim of capturing the views and experiences of carers would ensure data saturation and allow more sophisticated analysis.
Comparison with existing literature
Previous research studied informal carer’s contributions to self-care for people with established HF [6]. Informal carers responded to certain symptoms by calling the clinician and facilitating clinic appointments, and were also involved in navigating the healthcare system and providing understanding and support.
The theme of normalisation of symptoms secondary to ageing has also been described in interviews with informal carers of patients with Alzheimer’s disease [21]. Public perception that memory loss is a normal consequence of ageing, rather than symptomatic of dementia, is commonplace [22]. Krull et al. reported that informal carers’ normalisations broke down due to a pivotal event in which symptoms could no longer be normalised. Intervention from ‘outsiders’ – individuals trusted by the informal carer but not involved in their day-to-day life, who observed and reported the symptoms of the carer’s loved one – was also influential in breaking down normalisations.
Normalisation of symptoms, as well as being due to a lack of understanding of HF symptoms and belief that they are part of normal ageing, may be a mechanism of collusion between participants and their spouses. This has also been described in the case of dementia symptoms [23]. Wingham et al recently reported that carers experience anguish in the transition to becoming an informal carer of someone with HF due to a changing sense of self [24]. Normalisation may unintentionally be used to delay diagnosis because carers and people with HF symptoms do not want their daily roles to change. Adult children who do not cohabit with their parents may be less likely to expect a significant role change to come with diagnosis so are perhaps less likely to be involved in collusion.
An important finding of our study was that the carer’s recognition of and concern about symptoms led participants to seek medical help. Several studies have implicated witnesses of symptoms in help-seeking, a process that is often termed sanctioning [25]. Patel et al interviewed 88 patients diagnosed with deteriorating chronic HF from a Swedish community and described a ‘wait and see’ strategy used by HF patients to delay hospital admission. In 15% of cases, patients were sent to hospital by their spouses, children or home carers, who noticed something was seriously wrong despite strong denials from patients [26]. It was clear from our interviews that some participants did not want to go to hospital for their symptoms and disregarded the advice of carers, and sometimes carers would take control and take them to see a medical practitioner.
Furthermore, despite Patel et al studying patients who had already been diagnosed with HF, participants in the study still tended to normalise exacerbations of HF symptoms as being part of old age [26]. This suggests that better communication to ensure patient understanding of HF diagnosis is required. Other studies also found that patients with organ failure and their carers have an inadequate understanding of their diagnoses [27]. In a comparative study of the experiences of patients with cancer, organ failure and frailty and their carers, Kendall et al [28] reported that patients with cancer, and their carers, had a much more detailed knowledge of their illness in comparison to patients with organ failure.
The gender of carers may also have influenced our results. Nine out of the ten carers present during the interviews were female. The role of women in caregiving has been previously explored in carers of people with dementia. Tolhurst et al. describe how gendered meanings of care can affect the experience of carers [29]. They describe the challenges of ‘caring’ being defined as a natural female role, associated with nurturing and maternal values, and the impact this can have on female self-identity. The role of gender may have had some impact on the findings of our study and prospective research, recruiting both male and female carers, is needed to explore this further.
Implications for research and practice
This study found differences between the roles of spouses and children as carers of people with HF which could have implications for practice. The spouse of the person with symptoms tended to be less active in seeking medical help compared to adult children, even when they notice the decline that comes with HF. Public awareness of the symptoms of HF and understanding of its causes has been repeatedly found to be inadequate, with a large proportion of the European public unable to recognise breathlessness and swollen ankles as symptoms of HF, and often thinking that HF is a normal consequence of ageing [30].
A qualitative synthesis of help-seeking in the event of cancer symptoms found similar triggers to this study, including ‘discussion of symptoms with friends and family’ [31]. However, the study also found that ‘specific well-known symptoms’ and ‘knowledge of cancer symptoms and awareness of risk’ were triggers for help-seeking. Any knowledge of HF symptoms before diagnosis was absent from the interviews in our study. Public health initiatives such as the Be Clear on Cancer campaign have focused on detection of cancer symptoms [32]. and similar initiatives for HF may have an impact on increasing awareness of HF symptoms.