Review
Understanding help-seeking decisions in people with heart failure: A qualitative systematic review

https://doi.org/10.1016/j.ijnurstu.2012.05.010Get rights and content

Abstract

Objective

To understand the process of help-seeking among heart failure patients from the perspectives of patients, caregivers and health professionals.

Design

Systematic review using qualitative meta-synthesis.

Methods

A systematic search (20th May 2011) was conducted to identify studies published in English as full papers ≥1995 reporting primary qualitative data with extractable heart failure-specific data or themes related to help-seeking in patients, caregivers or health professionals. Databases searched were: CINAHL, Medline, PsycInfo, Social Science Citation Index, Embase, Social policy/Practice, SocIndex, Ageline, Health Source Nursing, Scopus; additionally, we consulted with experts and manually searched references.

Results

58 studies (990 patients; 274 female, 527 male, 189 sex not described; 229 caregivers, 79 health professionals) were included. Heart failure help-seeking was embedded in daily experiences of heart failure but ongoing symptoms were confusing, ambiguous and disruptive; little support was available from professionals to interpret the presence and significance of fluctuations in symptoms for help-seeking. Other significant barriers to help-seeking were: avoidance-based coping, fear of hospitals and misplaced reluctance to be burdensome. Help-seeking was facilitated by good involvement and frank communication between patients, caregivers and health professionals and the presence of a sense of elevated personal risk.

Conclusion

Health services should harness primary care providers and support patients and caregivers to prioritize development of objective symptom monitoring skills, recognize and personally assimilate the elevated risks of heart failure and help-seeking delays and discourage avoidance-based coping and unwarranted concerns that downplay the significance of heart failure and urgency to address symptoms.

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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    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.

    1

    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.

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