The experiences of heart failure patients following their participation in self-management patient education programmes: A systematic review.

Review question/objective What are the experiences of heart failure patients following their participation in patient education programmes for self-managed care? Background Heart failure (HF) is a chronic syndrome and the final outcome of cardiovascular diseases, including hypertension and coronary heart diseases. The incidence of newly diagnosed HF is increasing worldwide [1]. The incidence of HF increases with age and the higher age groups carry higher risk of mortality [1, 2]. The symptoms patients experience contribute to reduced quality of life, increased mortality rates and increased hospital admission rates [3]. The burden of illness on the individual, family and primary health care represents a set of challenges to patients' ability to self-manage chronic illness and maintain health and quality of life [4]. The aims of treatment are to improve survival and quality of life [5]. Much emphasis is being placed on enabling people with heart failure to become ‘expert patients’, in order to self-manage their long term medical condition through educational intervention programmes that adopt multifaceted approaches [6-8]. Predictors of self management include concordance to treatment, positive health behaviours, evaluation of the importance of signs and symptoms and health care utilization. It has been shown that participants in self-management programmes demonstrate improved functional status, better quality of life and less hospitalization [9, 10]. The purpose of this systematic review is to identify experiences of heart failure patients following self-management programmes that contribute to best prepare men and women with HF to manage their long-term care and identify gaps in current patient education programmes. Inclusion criteria Types of participants The review will consider studies that include adult patients with a diagnosis of heart failure, 18 years and older, who participated in patient education programmes for self-managed care. Types of intervention(s)/phenomena of interest Self-management patient education programmes are variously described in the literature and vary in duration, include different set of self-management strategies, short term interventions, expected outcomes and follow-up. Patient education and self-management skills are often tailored to patients' functional and psychological well-being. Interventions may be variously described in the studies as nurse led, multidisciplinary, discharge education, patient education programme, and may target specific aspects of symptom management. Types of outcomes The review will focus on patients' personal experiences of participation in a selfmanagement programme and their subsequent care practices in relation to health outcomes. Types of studies This review will consider interpretive and critical studies that draw on the experiences of patients with heart failure enrolled on self management programmes Studies which adopt qualitative approaches such as phenomenology, grounded theory, narratives and ethnography will be selected. In the absence of research studies, textual evidence in the form of opinion papers and reports will be considered. Search strategy The search strategy aims to find both published and unpublished studies. The search will be limited to English language reports and cover 1990 to present day. The review will seek the worldwide literature. A three-step search strategy will be utilised in each component of this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. The databases to be searched include: CINAHL Embase Medline Psychlit PsychINFO Cochrane DARE JBI Clinical Evidence Grey Literature Dipex database BHF database Pre-Medicine AHRQ The search for unpublished studies will include: self-management programmes, service delivery plans, policy documents, guidelines. Initial keywords to be used will be: heart failure, heart diseases, patients' experiences, self-management, self-care behaviours, symptom management, community care and health outcomes. Assessment of methodological quality Research papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardised critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion with a third reviewer. Textual papers selected for retrieval will be assessed by two independent reviewers for authenticity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Narrative, Opinion and Text Assessment and Review Instrument (JBI-NOTARI). (Appendix II) Data collection Data from qualitative studies will be extracted using the standardized data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument QARI (Appendix III). Data from textual papers will be extracted using the standardized data extraction tool from the JBI-NOTARI (Appendix IV) Data synthesis Where meta-synthesis is possible, qualitative research findings will be pooled using the Qualitative Assessment and Review Instrument (QARI). This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings (Level 1 findings) rates according to their quality, and categorising these findings on the basis of similarity in meaning (Level 2 findings). These categories are then subjected to a metasynthesis in order to produce a single comprehensive set of synthesised findings (Level 3 findings) that can be used as a basis for evidencebased practice. Where textual pooling is not possible the findings will be presented in narrative form. Textual papers will, where possible be pooled using the JBI-NOTARI. This will involve the aggregation or synthesis of conclusions to generate a set of statements that represent that aggregation, through assembling the conclusions to generate a set of statements that represent that aggregation, through assembling and categorising these conclusions on the basis of similarity in meaning. These categories are then subject to a meta aggregation in order to produce a single comprehensive set of synthesised findings that can be used a as a basis for evidence-based practice. Where textual pooling is not possible the conclusions will be presented in narrative form. Conflicts of interest None