Improving support for heart failure patients: a systematic review to understand patients' perspectives on self-care.

AIMS: This systematic review aimed to generate patient-focussed recommendations to enhance support of heart failure self-care by examining patients' experiences, perspectives and self-care behaviours. BACKGROUND: Despite increased recognition of the importance of heart failure self-care, patients' knowledge and practices around this self-care and interventions to improve it are inconsistent. Consequently, current guidelines focus on what the domains of heart failure self-care are, more so than the ways to improve this care. DESIGN: Systematic review and qualitative interpretive synthesis. DATA SOURCES: A systematic, comprehensive and detailed search of 11 databases was conducted until March, 2012 for papers published 1995-2012: 37 studies were included (1343 patients, 75 caregivers, 63 health care professionals) that contained a qualitative research component and data on adult patients' heart failure self-care. REVIEW METHODS: This interpretive synthesis used a recognized approach consisting of a multi-stage analytic process; in addition, the included studies underwent quality appraisal. RESULTS: Findings indicate that while patients could often recall health professionals' self-care advice, they were unable to integrate this knowledge into daily life. Attempts to manage HF were based on how patients 'felt' rather than clinical indicators of worsening symptoms. Self-efficacy and learning from past management experiences facilitated favourable outcomes - these enabled patients and caregivers to adeptly apply self-care strategies into daily activities. CONCLUSIONS: Addressing common but basic knowledge misconceptions regarding the domains of HF self-care is insufficient to increase effective HF self-care; this should be supplemented with strategies with patients and family members to promote self-efficacy, learning and adaptation/application of recommendations to daily life.

A secondary meta-synthesis of qualitative studies of gender and access to cardiac rehabilitation.

AIMS: To discuss issues in the theorization and study of gender observed during a qualitative meta-synthesis of influences on uptake of secondary prevention and cardiac rehabilitation services. BACKGROUND: Women and men can equally benefit from secondary prevention/cardiac rehabilitation and there is a need to understand gender barriers to uptake. DESIGN: Meta-method analysis secondary to meta-synthesis. For the meta-synthesis, a systematic search was performed to identify and retrieve studies published as full papers during or after 1995 and contained: a qualitative research component wholly or in a mixed method design, extractable population specific data or themes for referral to secondary prevention programmes and adults ≥18 years. DATA SOURCES: Databases searched between January 1995-31 October 2011 included: CSA Sociological Abstracts, EBSCOhost CINAHL, EBSCOhost Gender Studies, EBSCOhost Health Source Nursing: Academic Edition, EBSCOhost SPORTDiscus, EBSCOhost SocINDEX. REVIEW METHODS: Studies were reviewed against inclusion/exclusion criteria. Included studies were subject to quality appraisal and standardized data extraction. RESULTS: Of 2264 screened articles, 69 were included in the meta-method analysis. Only four studies defined gender or used gender theories. Findings were mostly presented as inherently the characteristic of gendered worldviews of participants. The major themes suggest a mismatch between secondary prevention/cardiac rehabilitation services and consumers' needs, which are usually portrayed as differing according to gender but may also be subject to intersecting influences such as age or socioeconomic status. CONCLUSION: There is a persistent lack of theoretically informed gender analysis in qualitative literature in this field. Theory-driven gender analysis will improve the conceptual clarity of the evidence base for gender-sensitive cardiac rehabilitation programme development.

A systematic review of patient heart failure self-care strategies.

BACKGROUND: Self-care is at the foundation for living with a chronic condition such as heart failure (HF). Patients with HF express difficulty with translating self-care knowledge into understanding "how" to engage in these activities and behaviors. Understanding the strategies that patients develop to engage in self-care will help healthcare providers (HCPs) improve support for unmet self-care needs of HF patients. The purpose of this systematic review was to highlight strategies that HF patients use to accommodate self-care recommendations into the reality of their daily lives. METHODS: A systematic review using qualitative meta-synthesis was carried out. Included studies had to contain a qualitative component and data pertaining to self-care of HF from adults older than 18 years and be published as full papers/theses beginning 1995. Ten databases were searched until March 19, 2012. RESULTS: Of 1421 papers identified by the search, 47 were included. Studies involved the following: 1377 patients, 45% women, mean age of 67 years (range, 25-98 years), 145 caregivers, and 15 HCPs. Approaches to self-care reflected both perception- and action-based strategies and were a means to effectively manage HF. Although HF patients often expressed difficulty on how to integrate self-care recommendations into their daily lives, they developed intentional, planned strategies that harnessed previous experiences. CONCLUSIONS: Healthcare providers must appreciate that patients view self-care as an "adaptation" that they undertake to maintain their independence and quality of life. In addition, HCPs must recognize that because self-care is a process of learning over time from experience, an individualized approach that emphasizes how to self-care must be adopted for patients to develop the necessary HF self-care skills.

Factors influencing participation in cardiac rehabilitation programmes after referral and initial attendance: qualitative systematic review and meta-synthesis.

BACKGROUND: Greater participation in cardiac rehabilitation improves morbidity and mortality in people with coronary heart disease, but little is understood of patients' decisions to participate. METHODS: To develop interventions aimed at increasing completion of programmes, we conducted a qualitative systematic review and meta-synthesis to explore the complex factors and processes influencing participation in cardiac rehabilitation programmes after referral and initial access. To be included in the review, studies had to contain a qualitative research component, population specific data on programme participation in adults >18 years, and be published ≥1995 as full articles or theses. Ten databases were searched (31 October 2011) using 100+ search terms. RESULTS: Of 2264 citations identified, 62 studies were included involving: 1646 patients (57% female; mean age 64.2), 143 caregivers, and 79 professionals. Patients' participation was most strongly influenced by perceptions of the nature, suitability and scheduling of programmes, social comparisons made possible by programmes, and the degree to which programmes, providers, and programme users met expectations. Women's experiences of these factors rendered them less likely to complete. Comparatively, perceptions of programme benefits had little influence on participation. CONCLUSIONS: Factors reducing participation in programmes are varied but amenable to intervention. Participation should be viewed as a 'consumer behaviour' and interventions should mobilize family support, promote 'patient friendly' scheduling, and actively harness the social, identity-related, and experiential aspects of participation.

A qualitative systematic review of influences on attendance at cardiac rehabilitation programs after referral.

BACKGROUND: Cardiac rehabilitation and secondary prevention programs can prevent heart disease in high-risk populations. However, up to half of all patients referred to these programs do not subsequently participate. Although age, sex, and social factors are common predictors of attendance, to increase attendance rates after referral, the complex range of factors and processes influencing attendance needs to be better understood. METHODS: A systematic review using qualitative meta-synthesis was conducted. Ten databases were systematically searched using 100+ search terms until October 31, 2011. To be included, studies had to contain a qualitative research component and population-specific primary data pertaining to program attendance after referral for adults older than 18 years and be published as full articles in or after 1995. RESULTS: Ninety studies were included (2010 patients, 120 caregivers, 312 professionals). Personal and contextual barriers and facilitators were intricately linked and consistently influenced patients' decisions to attend. The main personal factors affecting attendance after referral included patients' knowledge of services, patient identity, perceptions of heart disease, and financial or occupational constraints. These were consistently derived from social as opposed to clinical sources. Contextual factors also influenced patient attendance, including family and, less commonly, health professionals. Regardless of the perceived severity of heart disease, patients could view risk as inherently uncontrollable and any attempts to manage risk as futile. CONCLUSIONS: Decisions to attend programs are influenced more by social factors than by health professional advice or clinical information. Interventions to increase patient attendance should involve patients and their families and harness social mechanisms.

Understanding help-seeking decisions in people with heart failure: a qualitative systematic review.

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.