PLoS ONE 10(5): These findings, and our aim to contrast our results with existing evidence on empowerment for other patient groups and to build conceptual understanding, informed our decision to conduct a critical interpretive synthesis, rather than use traditional aggregative review methodology. Lean Library can solve it. The qualities advocated applied to HCPs, families, informal carers, patients and services, with the synergy between these groups integral in the attainment of empowerment. Studies that lacked a psychometric assessment, were not tested in a sample of adult patients or were designed for completion by children or other relatives or carers were excluded. Dar Al Uloom University, Riyadh, Kingdom of Saudi Arabia . We adopted this methodology based on the findings of our initial scoping of the literature, which aimed to identify empirical research on empowerment for adults in the advanced stages of a life-limiting illness This exercise identified a small body of literature of methodological heterogeneity, highlighting the challenges of attempting to collate and synthesise evidence where the phenomenon of interest is not well specified and where evidence is very heterogeneous in both type and purpose. A synthesis of constructs captured by the included measures is shown in Table 3, grouped into four domains. Members of _ can log in with their society credentials below, Dominique Wakefield, Jo Bayly, Lucy Ellen Selman, Alice M Firth, Irene J Higginson, and Fliss EM Murtagh, This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (. For interpretability, only four studies reported how missing items were handled [18,34,35,44]. No, Is the Subject Area "Database searching" applicable to this article? RESULTS Empowerment is more often defined according to some of its anticipated outcomes rather than to its very nature. Sharing links are not available for this article. Reference () . No, Is the Subject Area "Psychometrics" applicable to this article? Citation: Barr PJ, Scholl I, Bravo P, Faber MJ, Elwyn G, McAllister M (2015) Assessment of Patient Empowerment - A Systematic Review of Measures. amirzaki78@hotmail.com . No, Is the Subject Area "Questionnaires" applicable to this article? Reflecting the shift in Western culture towards increasing consumerism and individualism, institutional culture in healthcare is slowly moving away from an ethic of paternalism towards an ethic of empowering patients to make informed decisions. Only six studies assessed reliability, resulting in either intermediate [32,37] or positive [18,36,39,43] scores. When assessing reliability it is recommended that both internal consistency and test-retest reliability be investigated [65]. By continuing to browse Empowerment in patients with chronic diseases has shown several positive effects, such as increased patient satisfaction with care, improved patient adherence to self-management of the treatment and better clinical outcomes [12–15]. No information was found in any study on agreement. The COSMIN criteria were used to assess methodological quality of the included studies. This review intends to appraise the international evidence surrounding definitions and/or concepts pertaining to patient empowerment for persons living with advanced, life-limiting disease, with the aim of understanding whether patients can still be ‘empowered’ in the context of advanced, terminal illness and/or whether these patients fall outside of the measures, models and services designed around the current understanding and constructs of ‘patient empowerment’. Of those, only four had moderate support. Therefore, an antecedent to patient empowerment is staff empowerment, wherein empowerment can be understood and the concept transferred and operationalized. Dr. GE provides ad hoc consulting to Emmi Solutions, a producer of patient decision support tools, and holds a number of research grants in the area of shared decision-making. A quick Medline search using the phrase “patient empowerment” elicits over 500 recent articles. The assessment of the quality of psychometric properties of included measures using the criteria developed by Terwee et al [23] is summarised in Table 5. Patients needed HCPs to convey hope of what still can be done. The ICECAP capability [61,62] measures capture patient wellbeing defined in terms of ability to 'do' and 'be' the important things in life: enjoyment, achievement and attachment and is a more general measure of patient quality of life. Analyzed the data: MMcA PJB PB IS MF. Empirical research included descriptions of, or references to, patient empowerment within their results, irrespective of whether empowerment featured in the objectives of the study. For interpretability and generalisability boxes there is no possibility to aggregate the extracted data into a sum score, therefore these sections will be summarised qualitatively. An additional box was used to assess requirements for studies that used Item Response Theory (IRT). American Journal of Research Communication www.usa-journals.com Elnaga, et al., 2014: Vol 2(1) 13 ajrc.journal@gmail.com The Impact of Employee Empowerment on Job Satisfaction . Owing to the deleterious effects of advancing disability, relationships and roles needed constant re-evaluation. Barr et al.5 identified 30 studies on 19 measures of empowerment for a range of patient groups, although none designed specifically for patients with advanced, life-limiting conditions. In all, 13 papers met inclusion criteria. The proposed conceptual model (Figure 2.) captured constructs ranging from psychological empowerment (interpersonal, interactional, behavioral), through knowledge, skills and attitudes, to decision-making, sense of control, hope, coping and self-efficacy. by ‘dumping’ information on them rather than collaborating in decision-making), conversely resulted in patients feeling abandoned and disenfranchised.31 In addition, respecting the preference of some patients to pass on responsibility for decision-making can be an empowering demonstration of wishes for patients.31. Personal Health Information Recommender: implementing a tool for the empowerment of cancer patients. These, like all the themes identified, were expressed to different degrees within the literature. Conceived and designed the experiments: MMcA GE PJB. Antecedents, attributes, and consequences of empowerment will be discussed, as well as suggested strategies in … BACKGROUNDPatient engagement is critical in delivering high‐quality care. … For more information view the SAGE Journals Sharing page. Database search details and search terms used for review, MEDLINE via Ovid (Inception to week 2 March 2018), EMBASE via Ovid (Inception to week 2 March 2018), CINAHL via EBSCOhost (Inception to week 2 March 2018), PsycINFO via Ovid (Inception to week 2 March 2018), Cochrane Database of Systematic Reviews (Inception to week 2 March 2018). ¶‡ These authors are shared first authors on this work. The orientation of critical interpretive synthesis towards theory generation makes its practice distinct from that of meta-ethnography and other qualitative synthesis methods. We would propose that the themes of this review may provide a useful starting point to guide the assessment of existing services and development of a new dialogue surrounding patient participation in the design of services and interventions. In contrast, there is a significant body of work in this area for patients with long-term conditions and as part of population health-promotion strategies.12,13,40,41. Six measures are generic, while 13 were developed for a specific condition (N=4) or specialty (N=9). An example of this is demonstrated by Richardson et al. In the UK, government health policy declared in “High Quality Care for All” [9] committed the National Health Service (NHS) to patient empowerment. Patient empowerment is a high priority for healthcare policy makers in many countries. Yes The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Patients can participate in health care in many ways. However, following identification of full-text articles, a decision was made to include only measures that specifically stated that they were designed to measure patient empowerment. Possessing the skills and capacity to continually adapt, and remain resilient to, loss provided opportunity to achieve or regain a sense of feeling ‘in control’.30 The presence or absence of control thus emerged as a key moderator to being or becoming empowered. Included studies assessed a median of four out of the nine COSMIN criteria. Merely providing knowledge and skills around symptom management was highlighted as insufficient.27 Personalised information provision, at the patient’s pace, that included the expected symptom trajectory and more generally ’what to expect’, was reportedly empowering.29,30, Mikkleson et al.36 report on the benefits of a ‘healthy’ lifestyle educational intervention, emphasising the continued desire to be ‘healthy’ and make ‘healthy choices’ even in the advanced stages of illness, as a mechanism for regaining control, which promoted confidence and coping. Figure 2. The electronic search strategies used are available in S1 Fig Titles and abstracts retrieved from the database searches were equally distributed to four team members (PB, IS, PBr, MMc) for independent screening. Patient activation interventions have been generally effective in assisting patients to be more proactive during medical visits by helping them identify, phrase and rehearse questions; disclose concerns and problems; and raise agenda items,23, 24 or in increasing scores indicative of gains in patient knowledge, skill and confidence in health self-management tasks as assessed by the Patient … To achieve a highly sensitive search strategy, databases were searched from their inception to Sept 15, 2012 using a number of Medical Subject Headings (MeSH) and keywords in four domains: (i) patient (ii) empowerment, (iii) measures and (iv) psychometrics (S1 Fig). Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA, Is the patient satisfaction questionnaire an acceptable tool for use in a hospice inpatient setting? Each box comprises items evaluating methodological quality, such as appropriateness of sample size and psychometric statistic(s) generated. the site you are agreeing to our use of cookies. Electronic searches identified 4083 records and the secondary search generated 311 additional records. Therefore where the majority of items within the box are considered ‘good’, and one item is marked as ‘fair’ the overall quality of that box is considered ‘fair’. Journal of Psychosocial Nursing and Mental Health Services, Vol. Lead author involved in drafting and revising the article and approved the version to be published. Both enablement and activation overlap with some, but not all constructs across the four domains identified in the current study. 2. The most common sampling method was convenience sampling [13,16,37,38,43,47,52,53]; some studies did not report the sampling method at all [17,28,31,36,46,51] and only a few studies used randomised sampling [39,40,42]. Although these concepts have been discussed for a number of years, their exact meaning in hospital care remains somewhat unclear. But, patient empowerment is generally seen as leading to collaborative, coordinated care. To apply the COSMIN criteria four steps were followed: 1) Identify what properties (boxes) were assessed in the paper and select these boxes, 2) determine if classical test theory (CTT) or IRT was used, 3) evaluate methodological quality of studies identified in step 1 and 4) assess the generalisability of results from the studies on properties identified in step 1. We undertook two assessments of quality with two distinct aims: Firstly, to evaluate the methodological quality of the included studies. Six articles did not report any subscales; for these, we have included some information on what the measure was intended to capture. Each potentially included paper was scrutinised, using these criteria, and discussed by at least two of the authors (D.W., J.B. and F.E.M.M.) Furthermore, relationships with HCP and families, for this group, evolve more readily owing to persistent losses and often inevitable physical or cognitive dependency. In addition, as recommended by Terwee et al [23] criterion validity was not assessed in this study using either COSMIN or Terwee et al criteria because there is no gold standard comparison for measures of patient empowerment. The purpose of the study was to develop the patient empowerment index (‘IKP’/Indeks Keberdayaan Pasien) and its dimensions (patient knowledge, patient control, and patient participation) in patients with diabetes mellitus. Is the Subject Area "Diabetes mellitus" applicable to this article? Information on floor and ceiling effects was reported in nine studies, resulting mainly in intermediate scores [28,37,41,46,47,52]. Greater efforts should be made to progress the empowerment of patients nearing the end of their lives. 2. No study assessed all the psychometric properties highlighted by Terwee et al [23]. However, a systematic review of the empirical evidence on how empowerment affects medication adherence—the extent to which patients … Search terms (Appendix 1) were generated from the existing research and theoretical literature surrounding patient empowerment and activation.4,6,16,19,20 We subsequently trialled various combinations of concept headings and search terms before settling on a broad search strategy, accepting that we would obtain a large volume of papers of high specificity and low sensitivity. The concepts of patient empowerment, patient participation and patient-centeredness have been introduced as part of the trend towards a more participatory health care and have largely been used interchangeably. Empowerment is a process whereby patients gain the necessary knowledge to influence their own behavior to improve the quality of their lives. We included studies incorporating a mix of participants, including informal carers and HCPs, only in circumstances where patient reported data could be separated and extracted. Responsiveness (box I) was only assessed in one study [18] and was rated as fair. Other areas of cross over with patient empowerment include measures of shared decision-making, which may capture aspects of collaboration and mutual decision-making, components of domain 3 in our categorisation of patient empowerment [59,60]. e0126553. This led to the inclusion of 30 studies. No discernible differences were identified between the cancer and non-cancer groups with respect to patient empowerment. Funding: MMcA’s time contribution was funded by the National Institute for Social Care & Health Research (UK, Wales) through an Academic Health Sciences Collaboration Clinical Research Time Fellowship. Psychometric testing was limited to assessment of structural validity, internal consistency and hypothesis testing, with no assessment of either test-retest reliability or responsiveness. At the full paper screen, the included articles were again distributed equally to four team members (PB, IS, PBr and MMc) for assessment of the methodological quality of studies and the quality of included measures. To address this, we used criteria developed by Terwee et al. To avoid any intellectual conflict of interest, this study was neither extracted nor rated by MMc. The Patient Enablement Instrument focuses on whether patients feel able to understand their illness, cope with their illness and their lives, and keep themselves healthy [57]. BACKGROUNDPatient engagement is critical in delivering high‐quality care. Yes Critical interpretive synthesis methodology, developed by Dixon-Woods et al.,18 is an iterative approach designed to appraise and synthesise complex and heterogeneous quantitative and qualitative evidence, in a bid to develop a novel definition, concept or theory. Patient empowerment. Submit an article Journal homepage. The solution – patient empowerment. From a policy and practice standpoint, for a measure to be useful as a PROM for evaluating interventions, it is vital to understand how responsive the measure is to change in the underlying construct being measured e.g. Systematic review (PROSPERO no. There is evidence that for some patients, desire for open and honest communication can be restricted by the fear of losing hope, based on either previous experience or an expectation of clinicians censoring hope when communicating with complete honesty in the context of life-limiting illness. Abstract. 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