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Unclear illness perceptions are common in heart failure. The self-regulation model of illness behaviour highlights factors that may impact how people with chronic illness choose to cope with or manage their condition and has been used to study pre-hospital delay for stroke and acute myocardial infarction. The principles of self-regulation can be applied in heart failure to help illuminate the link between unclear illness perceptions and sub-optimal symptom self-management. Informed by the self-regulation model of illness behaviour, this study examines the role of illness perceptions in coping responses that lead to delayed care-seeking for heart failure symptoms. Mixed-methods phenomenological study. Quaternary referral hospital - centre of excellence for cardiovascular care and heart transplantation. Seventy-two symptomatic patients with heart failure participated in a survey assessing illness perceptions. A subset of fifteen individuals was invited to participate in semi-structured interviews. Illness perceptions were assessed using the Brief Illness Perception Questionnaire. In-depth semi-structured interviews were conducted to elicit previous care-seeking experiences and decision-making that led to a passive, or active coping response to worsening symptoms. Descriptive statistics were used to report questionnaire findings, and open-ended responses were grouped into descriptive categories. Interpretative phenomenological analysis was undertaken on interview transcripts. Participants perceived little personal control over their condition and mostly attributed heart failure to lifestyle factors such as diet and lack of activity. Cognitive dissonance between perceived self-identity and heart failure-identity led to a highly emotional response which drove coping towards avoidance strategies and denial. This study demonstrates the use of the principles of self-regulation in heart failure and offers a framework to understand how patient representations and emotional responses can inform behaviour in illness. Findings highlight the value of empowering patients to take control of their health and the need to help align values (e.g. independence) with behaviours (e.g. actively addressing problems) to facilitate optimal symptom self-management. [ABSTRACT FROM AUTHOR]

An editorial is presented on terminology of heart failure. Topics discussed include specificity of diagnosis having huge implications for people living with heart failure, their families and friends; health literacy needs of the public in relation to heart failure; and group of signs and symptoms of well-defined diseases.

Delayed care-seeking for heart failure symptoms increases the risk of unplanned and frequent hospitalization. Presenting to hospital at a later stage when symptoms are severe requires more complex treatment, contributing to longer lengths of stay and higher risk of mortality. Patient-related factors such as knowledge have been highlighted as key contributors to care-seeking delay, yet little is known about how previous experiences within the healthcare setting, including relationships with providers, influence decisions to engage with health services when required. To assess patient-related factors thought to impact care-seeking, and examine the role of previous healthcare experiences in decisions to seek or avoid professional care. Sequential mixed-methods study with a phenomenological approach. A cardiology in-patient ward in a quaternary referral hospital in Sydney, Australia. A total of 72 symptomatic in-patients diagnosed with heart failure. Self-efficacy, heart failure knowledge and health literacy were assessed quantitatively. Semi-structured, in-depth interviews were undertaken with a subset of participants to elicit previous healthcare experiences and their influence on seeking care when symptoms worsened. Qualitative data were analyzed using interpretative phenomenological analysis and interpreted in the context of quantitative findings. Three major themes were identified that impacted decisions to seek or avoid professional care: (i) preference for continuity; (ii) previous hospital experience and; (iii) patient-provider relationships. Avoidance of care-seeking was described, despite quantitative data reflecting high levels of self-efficacy, heart failure knowledge (12.3±1.9 out of 15), and above-average health literacy levels (75% adequate – 15% higher than average in heart failure). The qualitative and quantitative data together demonstrate that participants delayed seeking care for heart failure symptoms despite having sound knowledge and self-efficacy to seek professional care when necessary. Previous healthcare experience affects patient's subsequent action, despite having skills and heart failure knowledge. Interactions with the healthcare system and those within it may impact decisions to avoid seeking treatment more than patient-related factors such as condition-specific understanding. [ABSTRACT FROM AUTHOR]