ReviewUnderstanding help-seeking decisions in people with heart failure: A qualitative systematic review☆
Introduction
Heart failure (HF) is characterized by high mortality, poor quality of life, and frequent hospitalization (Heart Failure Society of America, 2010). As the syndrome affects 6–10% of adults over 65 years of age (McMurray and Stewart, 2000) – the personal, systems and societal costs of heart failure are extremely high and rising. In the United States, over 5.8 million people have heart failure and its annual costs are over $39 billion (Lloyd-Jones and Adams, 2010) or around 2% of the national health care budget (Lloyd-Jones and Adams, 2010). Similar costs, as proportion of health care budgets, are reported in Europe (Braunschweig et al., 2011, Stewart et al., 2002) and high-income countries internationally (Berry et al., 2001). Although length of hospitalization is reportedly shorter in the USA (around 4 days) than in Europe (around 11 days), expensive in-hospital care contributes the most to total HF costs (Braunschweig et al., 2011, Stewart et al., 2002). Furthermore, as the severity of HF increases, so do the total costs of HF (Berry et al., 2001). To reduce these effects, health professionals should support effective ongoing heart failure management (Heart Failure Society of America, 2010) and its self-care (Lainscak et al., 2010, Riegel et al., 2009). An important dimension of this self-care is at what point and how patients should seek help from health professionals for worsening symptoms (Heart Failure Society of America, 2006).
Help-seeking is ‘a multi-stage process, influenced by a range of factors, that results in assistance being sought from a health professional or system in response to symptoms or complications’ (Liang et al., 2005, National Heart Lung and Blood Institute, 1997). Though patients with heart failure should be able to recognize symptoms of deterioration and seek help promptly (Task Force for Diagnosis and Treatment of Acute and Chronic Heart Failure of the European Society of Cardiology, 2008), most delay 2–7 days before seeking help (Evangelista et al., 2000, Friedman, 1997, Gravely-Witte et al., 2010). Such delays may contribute to avoidable suffering, treatment and costs (Heart Failure Society of America, 2010). In Canada, patients admitted to hospital require a mean of 13 days of expensive care to stabilize symptoms (Lee et al., 2004, Tsuyuki et al., 2003). Yet, despite the prevalence and cost of delays, how professionals can support prompt help-seeking is not well understood. Although numerous qualitative studies have explored patient accounts of heart failure, this research has not been examined for data on help-seeking. This knowledge could inform interventions and care to promote prompt help-seeking.
Section snippets
Methods
Qualitative systematic review derives knowledge from systematic identification and synthesis of findings from published qualitative studies (Britten et al., 2002). To provide useful insights into patient decision-making (Feder et al., 2006, Smith et al., 2005) and help-seeking (Smith et al., 2005), we used meta-synthesis (Noblit and Hare, 1988) (see online Appendix A) to collate and interpret findings from published studies containing data on help-seeking among patients with heart failure (
Results
From 2120 citations, 209 papers contained qualitative findings (Fig. 1) and were fully screened by SH and AMC. Of these, 58 studies met the criteria for inclusion in the review (Table 2). Five studies were each reported over two papers (Table 2). Studies involved: 990 patients (274 women, 527 men, 189 sex not described; mean age: 70.1 years, range: 39–86 years), 229 caregivers and 79 health professionals (15 nurses; 35 general practitioners; 12 internists; 17 cardiologists).
While only one study
Discussion
Current guidelines recommend that to seek help appropriately, patients should be able to state the signs and symptoms of worsening heart failure, recognize when these symptoms worsen and have a ‘concrete plan’ for help-seeking (Heart Failure Society of America, 2010). This review suggests that, in the context of daily experiences and accounts of help-seeking, achieving the level of ‘clarity’ required for these steps will be challenging, complex and should harness the contributions of primary
Conclusion
Help-seeking was found to be a multi-stage process embedded in daily experiences of heart failure. Symptoms were confusing, ambiguous and disruptive and little support was available from professionals to interpret their presence and significance. Avoidance-based coping, fear of hospitals, and misplaced reluctance to be burdensome were common. Help-seeking was facilitated via involvement and effective communication between patients, caregivers and health professionals and the presence of a sense
Conflict of interest
None.
Funding
AMC is supported by a career awards from Alberta Innovates Health Solutions and the Canadian Institutes for Health Research. The review was funded in part by a Small Faculties Grant from the University of Alberta.
Ethical approval
None.
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Cited by (51)
Understanding help-seeking decisions in people with subjective cognitive decline: A systematic review of qualitative studies
2021, Geriatric NursingCitation Excerpt :However, such benefits depend on early identification, which relies on the ability of individuals to detect the problem and seek help in the absence of routine screening. Help-seeking behaviors were investigated in patients with different health problems, such as cancers,11 cardiovascular accidents,12 mental illnesses,13,14 and dementia.15–17 Help-seeking is a dynamic decision-making process, which is defined as an intentional action to solve a problem that began with awareness of some change, followed by assessment of the problem to determine if help is needed and to identify available sources of help and finally the willingness to seek help and disclose relevant information.18
Illness identity as an important component of candidacy: Contrasting experiences of help-seeking and access to care in cancer and heart disease
2016, Social Science and MedicineCitation Excerpt :Conversely, coronary heart disease attracts little fear or dread in the public psyche and is more often seen to represent a good, and crucially, quick death (Emslie et al., 2001). In reality, when heart disease or more specifically heart failure is described by patients and families, the picture is of an extreme condition with a range of negative consequences (Clark et al., 2012). How and whether these cultural differences extend to differences in service provision is not widely researched.
Knowledge among patients with heart failure: A narrative synthesis of qualitative research
2019, Heart and LungCitation Excerpt :It is shaped by subjective experience and evolves along with its possessor. This is not surprising given how HF has pervasive effects on individuals’ lives yet is uniquely experienced by patients.19,108,114,120 Several implications can be drawn from this synthesis of qualitative research on HF knowledge.
Heart failure self-management and normalizing symptoms: an exploration of decision making in the community
2018, Heart and LungCitation Excerpt :An important finding from this study was that participants did not apply HF education to appropriately respond to daily fluctuations in symptoms. Maladaptive coping strategies in heart failure management; waiting out the symptoms, avoiding situations that bring on the symptom, and reducing physical activity have been previously reported.36,37 The findings from our study also indicate that exertional shortness of breath and safe exercise capacity were poorly understood by the participants.
Gender differences in unplanned hospital admission: A population-based approach
2024, Nursing and Health SciencesSomatic Changes Perceived by Patients with Heart Failure during Acute Exacerbation: A Qualitative Study Using Text Mining
2023, Journal of Cardiovascular Nursing
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An oral paper about this review was presented at the World Congress of Cardiology in Buenos Aires: Clark, A.M., Savard, L., Heath, S., Spiers, J. 2008. A qualitative systematic review to understand help seeking during heart failure. Circulation 117, 14.
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Clark AM, Savard L, Heath S, Spiers J, McAlister FA. A qualitative systematic review to understand help seeking during heart failure. Circulation 2008 117:14.