Care-seeking behaviours for worsening symptoms in heart failure

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Purpose: Symptoms of breathlessness, fatigue, and peripheral oedema are a part of daily life for patients with heart failure (HF). These symptoms are the number one cause of HF-related hospitalisation, yet over 50% of patients with HF delay seeking professional care for worsening symptoms. Delayed care-seeking increases the risk of emergency hospitalisation, can lead to frequent re-admissions, longer lengths of stay, and death. Little is known about what lies behind patients’ decisions to seek or avoid professional care. The literature shows that misconceptions and lack of understanding of HF is common amongst patients with HF. The literature also tells us that patients with HF are likely to be cognitively impaired, have inadequate health literacy, and get most of their HF information from their providers. Whilst knowledge and understanding is assumed to be a major contributor to delayed care-seeking, educational interventions to reduce pre-hospital delay have, to-date, been unsuccessful. This thesis aimed to measure what is known to impact health related decisions, ascertain patients’ educational needs and perspectives of patient/provider communication, and explore their perspectives of factors that influence care-seeking behaviour, to inform a novel approach to promote timely care-seeking in HF. Methods: This mixed-methods study, guided by the self-regulation model of illness behaviour, involved 72 symptomatic patients with HF recruited from a larger longitudinal study at a tertiary hospital in Sydney, Australia. Quantitative data measuring illness perceptions, health literacy, HF knowledge, and self-efficacy were collected via validated questionnaires, and analysed using descriptive statistics in SPSS. Qualitative data eliciting patients’ experiences of and attitudes and beliefs about seeking professional care, educational needs, and perceptions of patient-provider communication were obtained through in-depth semi-structured interviews with 15 participants. Interviews were conducted face-to-face in hospital or over the phone, audio-recorded, transcribed verbatim, and were analysed using interpretative phenomenological analysis (IPA). Results: Interview findings revealed avoidance of care-seeking despite quantitative data reflecting high levels of self-efficacy, HF knowledge (12.3±1.9 out of 15), and above-average health literacy levels (75% adequate - 15% higher than average in HF). Participants described delayed care-seeking due to values and beliefs associated with healthcare use, and desire to avoid hospitalisation. The experience of being hospitalised represented a loss of freedom and control and served as a reminder of being ill. Perception of illness as a threat to identity led to rejection of treatment, whilst fear of being a burden to others also led to avoidance behaviours. Uncertainty about the cause and likely trajectory of symptoms often led to a ‘wait and see’ response, as symptoms were not perceived as serious. Professional care was often viewed as a last resort, when all alternative coping strategies were exhausted, and participants could no longer cope with the physical and emotional impact of symptoms. Patient-provider interpersonal relationships and preferences for continuity also impacted care-seeking. Participants relied heavily on providers for HF information and support, expressed numerous unmet educational needs, and had mixed feelings about quality of communication, which influenced subsequent care-seeking. Conclusion: Findings suggest that whilst patients may possess skills and HF knowledge, previous healthcare experience affects subsequent action. Improving patient-provider communication is key, not only to keep patients informed, but also to build supportive, trusting relationships to encourage timely care-seeking.
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