All of these constructs could be identified in measures included in the present study, with additional dimensions captured by some of the newer measures e.g. In comparison to the Herbert et al review [19], the present review identified 21 new studies, with 15 new measures of patient empowerment, and added robust quality appraisal of included studies and measures using published quality criteria. BACKGROUNDPatient engagement is critical in delivering high‐quality care. Dartmouth College, Lebanon, United States of America, Affiliation Retaining hope consequently enhanced capacities to acknowledge and manage transitions in their illness and made patients feel more powerful. Sharing links are not available for this article. 46113) with critical interpretive synthesis methodology. Furthermore, only four studies reported the percentage of respondents with the highest possible score [38,47,49,51], and only three studies reported the percentage of respondents with the lowest possible score [38,41,51]. An example is provided by Olsman et al.35 when a patient, not wishing to acknowledge her terminal diagnosis with HCPs, communicated this preference to help negotiate these relationships and felt empowered as a result. 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]. before deciding on inclusion or exclusion. studied the challenges to and facilitators of empowerment in an ethnographic study interviewing 26 patients aged ⩾65 years receiving specialist palliative care. Abstract This article aims to explore the relationship between patient empowerment and information and communication technologies (ICTs). https://doi.org/10.1371/journal.pone.0126553.t005. The emerging use of discrete choice experiments in service assessment and design42,43 may offer a method to maintain patient inclusion and support the generation of services that will benefit patient empowerment in tandem. Lean Library can solve it. The findings of limited psychometric quality of the 19 questionnaires identified in this study designed to capture patient empowerment is similar to that found in the Herbert systematic review [19] of measures of health-related empowerment. Similarly, 24 studies reported on construct validity, with only a few negative ratings [35,37,38,51]. The COSMIN checklist evaluates nine psychometric properties (‘A’ through ‘I’: A = internal consistency, B = reliability; C = measurement error, D = content validity, E = structural validity, F = hypothesis testing; G = cross-cultural validity, H = criterion validity, I = responsiveness). There are features of empowerment, for patients with advanced life-limiting illness, distinct to those of other patient groups. Constructs ranged from patient empowerment … The authors are very grateful to Dr Jan Stochl, Department of Health Sciences, York University and to Dr Stuart Nicholls, Department of Epidemiology & Community Medicine, University of Ottawa for assistance with quality assessment of included studies that used IRT methods. 28, 29, 31, 34, 36, 37 The remaining five papers, referencing empowerment within their results, were qualitative studies exploring living with multiple symptoms, 32 experiences of uncertainty, 25 the concept of chronic cancer, 26 relational ethics of hope 35 and experiences of self-management. No two PROMs capture the same construct(s) of patient empowerment and existing tools have limited overlap in constructs captured. Dar Al Uloom University, Riyadh, Kingdom of Saudi Arabia . Half of the studies (N = 15) were reporting on initial development and validation of the measure, and the rest were reporting on further development (including translation) of an existing measure. Robert M Anderson Diabetes Care Mar 1995, 18 (3) 412-415; DOI: 10.2337/diacare.18.3.412 This review provides an evidence base and conceptual model to inform future research into patient empowerment for patients with advanced life-limiting illness. … Patients can participate in health care in many ways. In contrast, Bravo et al.4 identified 67 studies with published definitions of patient empowerment for patients with long-term conditions. Information on floor and ceiling effects was reported in nine studies, resulting mainly in intermediate scores [28,37,41,46,47,52]. 2 Department of Informatics Engineering, Technological … the lowest rating on an item from any one box was considered the overall score for that box. In this context, control was signified through sorting affairs and making decisions in response to the limitations placed on their life expectancy.25 Control was also manifested through patient-led ‘handing over’ of physical tasks to family or HCPs to facilitate the reassignment of energy to alternative tasks/focuses.33 While one study stated that empowerment could not truly be achieved without people acknowledging their mortality and the consequences of progressive disability,30 others provided examples of patients feeling empowered, having stated their wish to avoid discussions around their mortality and future losses.33, Adaptation to, and coping with, continuous physical and social losses was cited as a key feature of becoming and being empowered in five papers. Empirical research included descriptions of, or references to, patient empowerment within their results, irrespective of whether empowerment featured in the objectives of the study. This does not alter our adherence to PLOS ONE policies on sharing data and materials. 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. The COSMIN criteria were used to assess methodological quality of the included studies. Patients ‘having hope’ were protective against the reality of terminal illness, including potential functional losses. To fully explore the notion of patient and family empowerment, this article will focus on the concept of empowerment in conjunction with practice development. We contrasted papers to observe and address any gaps, to ensure that the papers solely describing our population of interest were adequately addressing the subject matter, while also constantly testing and challenging our emerging theories against the available evidence for other patient populations. Pre-determined inclusion and exclusion criteria were applied during screening. This article takes the example of patient empowerment to show how the concept has been influenced by a variety of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. Simply select your manager software from the list below and click on download. It is also pertinent to have some indication of the minimal important change (MIC) or minimal important difference (MID) in scores on the measure (COSMIN v9). Healthcare systems globally are faced with the challenge of how best to support growing older populations with complex medical and social needs. 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. Two papers had the stated aim of exploring empowerment in our population of interest.27,33 We were unable to identify any interventions designed with the specific aim of empowering patients with advanced disease. Patient empowerment Patient empowerment Tierney, Alison J. A: Empowerment in nursing is a vital aspect of ensuring our professional success. 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]. Countries represented across the 13 papers were the United Kingdom (n = 5),25–29 the United States (n = 3),27,30,31 Australia (n = 3),31–33 Ireland (n = 2),27,34 the Netherlands (n = 1)35 and Norway (n = 1).36 There were seven qualitative studies and six mixed method studies, the characteristics of which are summarised in Tables 1 and 2, respectively. Six papers evaluated interventions, referencing patient empowerment as an incidental outcome. Journal of Psychosocial Nursing and Mental Health Services, Vol. 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? Volume 62, Issue 4. The concept of empowerment is defined as the creation of an environment in which individuals can behave as responsible adults, and where decision making is made at the point where the knowledge is greatest. This is the first systematic review of measures of patient empowerment to apply published quality criteria, assessing both the methodological quality of the studies and the psychometric properties of the measures identified. For COSMIN criteria, the overall proportion of included studies that achieved a rating of ‘Excellent’, ‘Good’, ‘Fair’ or ‘Poor’, is presented for each methodological element (box) examined. Patient empowerment; Fillers A memorable patient Patient empowerment BMJ 2001; 322 doi: ... after editing, be published online and in the print journal as letters, which are indexed in PubMed. Structural validity (box E) was also assessed by most studies with only the study on the Genetic Counseling Outcome Scale [18] being rated as good and all other studies receiving poor [28,30,31,34,36,37,41] or fair ratings [16,17,29,32,35,38–40,42–44,46–53]. Some studies reporting initial development of a measure were excluded (e.g. Focusing only on measures that purport to capture patient empowerment enabled more clarity to be provided regarding the constructs used to operationalise patient empowerment and removed the ambiguity of including related, but subtly different constructs. The total score of patient empowerment index value is 68.84 that is in the critical category, which means that consumers have control for the management of their disease conditions in their daily lives. use of a decision support tool to promote patient empowerment. Regarding hypothesis testing (box F) studies were either rated as poor [16,18,28,30,31,35–38,43,45–47] or fair [29,32,33,39–42,49,51–53]. We retained studies that exclusively included and defined patients as being in the advanced stages of life-limiting illness. Open Journal of Endocrine and Metabolic Diseases Vol.5 No.2，February 26, 2015 DOI: 10.4236/ojemd.2015.52003 2,571 Downloads 2,980 Views Citations The Effects of Patient Empowerment Scale in Chronic Diseases (Articles) No information was found in any study on agreement. ORCID iDsDominique Wakefield https://orcid.org/0000-0001-9800-0436, Lucy Selman https://orcid.org/0000-0001-5747-2699, Irene J Higginson https://orcid.org/0000-0003-1426-4923. Interpretability and generalisability were also assessed for each of the ten boxes that investigated methodological quality. perceived control) and domain 2 (patient actions and behaviours e.g. For more information view the SAGE Journals Sharing page. N2 - Background: There is an increased attention to and demand for patient empowerment in cancer treatment and follow-up programs. 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. By empowering patients to take co-responsibility for the management of their condition, it may not only … Data Availability: All relevant data are within the paper and its Supporting Information files. Patient empowerment is also twofold. To our knowledge, this is the first review to explore the concept of patient empowerment for adults living with advanced, life-limiting illness. Schulman-Green, D, Bradley, EH, Knobf, MT. If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. In addition, interventions shown to empower patients should be incorporated into routine practice; these include interventions that support patient and HCP dialogue28,31 and involve personalised lifestyle and self-management advice.29,36,37. amirzaki78@hotmail.com . 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. View or download all content the institution has subscribed to. This was achieved using the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) criteria. A definitive PROM capturing patient empowerment would enable healthcare interventions and policies designed to empower patients to be evaluated on the basis of how effective they are at achieving that goal. Click through the PLOS taxonomy to find articles in your field. These papers were later used to compare empowerment themes between the other disease groups and patients with advanced life-limiting disease to support the dialectic processes of the interpretive review. ‘Self-identity’, as a central feature of patient empowerment, includes preserving, enhancing and communicating self-identity. In congruence with the findings from other patient populations, having knowledge and skills encouraged patient participation in self-management, enhancing confidence and renewing a sense of self-responsibility and motivation.26,29,34,36 In contrast, desire for self-management education was often tempered by the patient’s ‘ability’ to consider further, inevitable losses. No, Is the Subject Area "Decision making" applicable to this article? Furthermore, the present study has classified the constructs captured by patient empowerment measures into four domains, supporting previous work suggesting that patient empowerment can be conceived of as a concept that is related to, but broader than patient-centeredness [54]. By increasing the role of patients, health care providers should become more responsive to patients' needs and preferences and deliver better quality care. Furthermore, relationships with HCP and families, for this group, evolve more readily owing to persistent losses and often inevitable physical or cognitive dependency. BACKGROUNDPatient engagement is critical in delivering high‐quality care. However, despite this, there is no agreement about the best way to demonstrate that patients have, indeed, been empowered. Submit an article Journal homepage. 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. Another 14 constructs were captured by at least one generic measure and at least one specialty or condition-specific measure. These were classified into four domains: patient states, experiences and capacities; patient actions and behaviours; patient self-determination within the healthcare relationship and patient skills development. This measure captured a construct of empowerment comprising positive attitude and sense of control, knowledge and confidence in decision making and enabling others. The proposed conceptual model (Figure 2.) Background Current health policies emphasize the need for an equitable doctor-patient relationship, and this requires a certain level of patient empowerment. We would also like to thank the student assistants Eva Christalle and Evamaria Müller for their invaluable help with this project. Key differences relate to the continued physical and psychosocial challenges this group encounter, producing contrasting patient empowerment foci. Despite policy interest and initiatives relating to patient empowerment, there is limited evidence to support the reliability and validity of existing tools. Both papers communicate the emphasis placed, by patients, on relationships and services that enable them to attain and retain respect, acknowledgement and inclusion. 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. However, the COSMIN criteria do not provide an assessment of the psychometric properties of the instruments themselves. Conceived and designed the experiments: MMcA GE PJB. In order to better understand which evaluation procedures have been used so far, and which advantages and disadvantages are connected to them, we systematically reviewed empowerment-based health promotion interventions. 1 Computational BioMedicine Laboratory, FORTH-ICS, Heraklion GR70013, Greece. First, many of these existing approaches assume a role for prevention of negative health states or promotion of lifestyle measures to benefit health states.15 Second, there is little research addressing and/or managing the irreversible aspects of health states.40 Third, there may be additional dimensions and aspects of empowerment in advanced illness, as described in the opening of our discussion. In the UK, government health policy declared in “High Quality Care for All” [9] committed the National Health Service (NHS) to patient empowerment. In all, 13 papers met inclusion criteria. Research ethics and patient consentThis study uses routinely collected, aggregated and anonymised data that are publicly available, and therefore, no ethical approvals were necessary. acceptance [17], emotional wellbeing/regulation [18,44], tolerance of uncertainty [52], stigma [34] and sense of affinity with the family [48]. From the literature focused on patients with long-term conditions (the group that empowerment strategies have largely evolved to target), a key empowerment outcome is aimed towards enhancing patients ‘feelings of control over their illness’.5,13,15 In contrast, an outcome or focus for empowered patients with terminal illness appears to centre around self-identity, as opposed to control of their illness or health state(s). Taking that extra step would demonstrate a true commitment to ‘patient empowerment’. Considering the benefits of services and programmes designed to empower patients in other groups, further research is needed to ensure end-of-life care is optimally empowering. Patient empowerment is a key topic in public health, medical sociology and in public debates on the modernisation of healthcare. This study contributes significant clarification of how patient empowerment, as operationalised in measures purporting to capture this concept, overlaps with, and differs from other related constructs. There is some limited evidence that patient empowerment can improve cost-effective use of health services [1]. 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. Conditions affecting the patients included in the test samples varied, with several studies conducted with samples of patients affected by a mental health condition (N = 10) [28–37] or diabetes (N = 7) [16,38–43]. The conference was convened under the auspices of the Danish Presidency of the European Union (EU), and organised by the WHO Regional Office for … Coulter , A. Jenkinson , C. ( 2005 ), ‘European patients’ views on the responsiveness of health systems and healthcare providers’ , European Journal of Public Health , 15 ( 4 ): 355 – 360 . Patient empowerment. Each box comprises items evaluating methodological quality, such as appropriateness of sample size and psychometric statistic(s) generated. Yes Wrote the paper: PJB IS PB MF GE MMcA. 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’. and I.J.H. ”Empowerment” is a hot topic in health research these days. The psychometric property reproducibility (agreement) was never assessed. A synthesis of constructs captured by the included measures is shown in Table 3, grouped into four domains. Fig 1 provides the study PRISMA flow chart with the complete list of reasons for exclusion at the stage of eligibility assessment. For many patients, it is the way that healthcare is delivered that is the problem. This led to the inclusion of 30 studies. Being an ‘empowered patient’, when living with advanced life-limiting illness is different to the experience and meaning of empowerment for other patient groups. The protocol for this systematic review was registered on PROSPERO: http://www.crd.york.ac.uk/PROSPERO/display_record.asp?ID=CRD42013003961#.U2zSMWcU-L0. This approach would be in keeping both with (1) ensuring development of a construct to operationalise in the new measure that has consensual support amongst key stakeholders and with (2) the emerging ‘realist’ approach to evaluating complex social interventions or programmes, which focuses on establishing what works for whom and how this can best be achieved [67]. How has empirical research defined ‘patient empowerment’ for adults in the advanced stages of a life-limiting illness. There is also some cultural diversity identifiable with stress management included only in Swedish measures, and some constructs that may be specific to the mental health context. This product could help you, Accessing resources off campus can be a challenge. In the theoretical model, each theme has a potentially mutually influential relationship with self-identity. 1. Empowerment seems likely to provide for an umbrella concept of professional development in nursing. 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