Living with Chronic Heart Failure: Exploring Patient, Informal Caregiver, and Healthcare Professional Perceptions.

Natasa Sedlar,Jerneja Farkas,Mitja Lainscak

doi:10.3390/ijerph17082666

Abstract

Due to the complexity of heart failure (HF) and its treatment process, a high level of patient and informal caregiver engagement is required for management results. We aimed to explore the views of HF patients, informal caregivers, and healthcare professionals about personal experiences, perceived needs, and barriers to optimal HF management. A qualitative study using semi-structured interviews with HF patients (n = 32), their informal caregivers (n = 21), and healthcare professionals (n = 5) was conducted in the outpatient HF clinic in Slovenia in 2018. A content analysis method was used to analyze the data. Negative emotional response to disease and its limitations (especially the inability to continue with work) and changes in family roles were the most prevalent topics regarding the impact of HF on livelihood. Among the most common barriers to HF self-care, were the difficulties in changing lifestyle, financial difficulties due to the disease, traditional cuisine/lack of knowledge regarding a healthy diet and lack of self-confidence regarding physical activity. Despite psychological and social difficulties due to HF being highlighted by patients and informal caregivers, only healthcare professionals emphasized the need to address psychosocial aspects of care in HF management. Established differences could inform the implementation of necessary support mechanisms in HF management.

Highlights

Heart failure (HF), the only cardiovascular disease with increasing prevalence, is often the final stage of a cardiovascular condition [1,2,3,4]
Clinic (n = 18) were male, retired, married or widowed. They were on average almost 10 years older compared to the HF patients that came to their medical visit unaccompanied (n = 14)
We explored the perspectives of HF patients, informal caregivers and healthcare professionals on their experiences, perceived needs and barriers to optimal HF management

Summary

Introduction

Heart failure (HF), the only cardiovascular disease with increasing prevalence, is often the final stage of a cardiovascular condition [1,2,3,4]. The studies have, for example, shown that patients diagnosed with HF living in rural areas face particular challenges, such as limited economic resources [13], limited access to management programs [14], lower levels of education and health literacy [15,16] that all lead to lower levels of HF knowledge and worse disease outcomes [17]. Informal caregivers and health professionals on challenges involved in the management of HF might differ, with health professionals often ignoring individual needs, resources and the role of context (such as place of residency, social support, healthcare system) that can affect the capacity for effective HF self-care [18]. Public Health 2020, 17, 2666; doi:10.3390/ijerph17082666 www.mdpi.com/journal/ijerph

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