Concepts and measures of patient empowerment: a comprehensive review

Do conceito de empoderamento do paciente aos instrumentos de medição: uma revisão integrativa

Abstract

OBJECTIVE

Analyze the definitions and dimensions of empowerment. Identify the strengths and weaknesses of empowerment measures based on the conceptual model.

METHOD

This was a comprehensive literature review of publications on the MEDLINE and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases.

RESULTS

Twenty-nine articles were selected. Seventeen definitions and seven dimensions of empowerment, and 10 empowerment measures were selected. Empowerment can be seen as an enabling process involving a shift in the balance of power, or as an outcome of this process. The dimensions reflect outcome indicators, such as participation in decision-making and control, and process indicators, such as knowledge acquisition and coping skills. Six of the tools analyzed by this study could be said to provide a robust measure of patient empowerment.

CONCLUSION

we propose a definition of empowerment that helps to deepen understanding of the term and, therefore, its operationalization.

Descriptors
Patient Participation; Power; Self Efficacy, Decision Making; Personal Autonomy; Review

Resumo

OBJETIVO

Analisar as definições e as dimensões do conceito de empoderamento. Identificar os pontos fortes e fracos dos instrumentos de medição de empoderamento a partir do seu modelo conceitual.

MÉTODO

Revisão integrativa da literatura nas bases de dados MEDLINE e Cumulative Index to Nursing and Allied Health Literature (CINAHL).

RESULTADOS

Foram selecionados 29 artigos, 17 definições de empoderamento, sete propostas de dimensões e 10 instrumentos de medição. Empoderamento pode ser concebido como um processo de formação e habilitação em que se transfere o poder de um indivíduo a outro, ou como resultado/produto desse processo; as dimensões refletem indicadores de resultados, tais como a participação na tomada de decisões e assumir o controle; e os indicadores relativos ao processo referem-se à aquisição de conhecimentos e às habilidades de enfrentamento. Dos instrumentos analisados, seis têm maior robustez.

CONCLUSÃO

Propor uma definição de empoderamento que possa ajudar a melhorar a compreensão do termo e, assim, operacionalizá-lo.

Descritores
Participação do Paciente; Poder; Autoeficácia; Tomada de Decisões; Autonomia Pessoal; Revisão

Resumen

OBJETIVO

Analizar definiciones y dimensiones de empoderamiento. Identificar fortalezas y debilidades de los instrumentos de medida de empoderamiento respecto al modelo conceptual.

MÉTODO

Revisión integrativa de la literatura en las bases de datos MEDLINE y Cumulative Index to Nursing and Allied Health Literature (CINAHL).

RESULTADOS

Fueram seleccionados 29 artículos . Se identificaron 17 definiciones, 7 propuestas de dimensiones y 10 instrumentos de medida. Empoderamiento puede ser un proceso de capacitación o habilitación en el que se transfiere el poder de un individuo a otro, o bien un resultado producto de ese proceso. Las dimensiones reflejan indicadores de resultados como son la participación en la toma de decisiones y tomar el control, e indicadores relativos al proceso como son la adquisición de conocimientos y las habilidades de afrontamiento. De los instrumentos analizados seis son los instrumentos que presentan mayor robustez.

CONCLUSIÓN

Se propone una definición de empoderamiento que puede ayudar a mejorar la comprensión del término y por lo tanto a operacionalizarlo.

Descriptores
Participación del Paciente; Poder; Autoeficacia; Toma de Decisiones, Autonomía Personal; Revisión

Introduction

In 2012, the World Health Organization's (WHO) Regional Office for Europe unveiled Health 2020¹, which sets out strategic directions and priority areas for European policy action for health and well-being up to 2020. One of the specific objectives of the framework is citizen and patient empowerment. The report regards empowerment and patient-centered care as key elements for improving health outcomes, user satisfaction with health care, communication between patients and health professionals, bringing about better adherence to treatment regimes, and ensuring the efficient use of primary health resources.

The concept of empowerment is employed in a wide range of contexts. In the sphere of health, the expression has been adopted primarily as a guiding basis for health promotion approaches and, in recent years, as a strategy for the management of chronic conditions. However, although there is broad consensus on its importance and its multidimensional nature, a universally accepted definition of the concept, its dimensions and its operationalization does not exist, thus giving rise to a variety of different measures of empowerment ^(2-5.

The main purpose of this article is to analyze the different definitions and dimensions of the concept of empowerment that appear in the literature in order to identify differences and similarities and propose a single definition that embraces their essential characteristics. The secondary objective of this work is to identify the strengths and weaknesses of the tools designed to measure empowerment based on the conceptual model.

Method

A review of the literature on empowerment was undertaken in four stages (Figure 1). The first stage consisted of a search of the MEDLINE and CINAHL (Cumulative Index to Nursing and Allied Health Literature) databases. The Medical Subject Headings (MeSH) controlled vocabulary was initially adopted for the search of MEDLINE. However, the concept empowerment is a descriptor in the MeSH and refers to "Power (Psychology)" and "Patient Participation", and thus it was decided to use an ad hoc strategy using the keyword "Patient Empowerment" together with another descriptor "Chronic Disease" and the Boolean Operator AND. Language (English) was used as a limit. No time limit was added.

Controlled vocabulary was also used for the search of the CINAHL database, where empowerment is a Subject Heading. A first search was therefore carried out using the keyword "Patient Empowerment" and language (English), study population (adults) and peer-reviewed as limits, whereby 86 results were obtained. A second search was carried out combining "Patient Empowerment" AND "Chronic Disease", which gave rise to three results.

The searches resulted in a total of 137 articles, which was reduced to 126 after excluding repeated articles.

The second stage consisted of a title and abstract review using the following inclusion criteria: titles including at least one of the terms empowerment, self-efficacy, self-management, self-care, patient participation, patient engagement, patient involvement, expert patient, shared decision-making, and health literacy; abstracts mentioning the term empowerment or referring to a review of the concept or the design of questionnaires or measures of patient empowerment. Articles that did not have an abstract were excluded. A total of 45 articles were selected for the next stage.

In stage three, the full text of each selected article was reviewed. Those articles that provided a definition of the concept, illustrated its relationships with other concepts or outlined the dimensions of the main concept and proposed empowerment measuring tools were selected, resulting in a final simple of 29 papers.

The reviews conducted in the second and third stages were carried out by independent reviewers, resulting in a high level of concordance (κ-index >0.8). Any discrepancies between reviewers were resolved by consensus.

Figure 1
Number of articles found on the databases, descriptors, criteria and sample selected for comprehensive review - Barcelona, Spain, 2015.

The Evaluating the Measurement of Patient-Reported Outcomes (EMPRO)⁶⁾ tool was used to identify the strengths and weaknesses of empowerment measuring tools based on the recommendations of Medical Outcomes Trust. The EMPRO covers eight key attributes: conceptual model, reliability, validity, responsiveness, interpretability, burden, modes of administration, and cross-cultural adaptation. An approximate version of the tool was used to evaluate the conceptual model since the present review only considered whether each tool provided a definition of the concept of empowerment and outlined its dimensions, rather than other assessment criteria, such as the participation of the target population in defining instrument content, the variability of the scale within the population, justifying the scale to measure empowerment, and the basis for calculating scores.

Results

Seventeen definitions^7-23 (Chart 1) and seven dimensions^9,14,24-28 of empowerment (Chart 2), and 10 empowerment measures ^{9,13,24,29-35} (Chart 3) were selected.

The analysis showed that the concept of empowerment has been broadly used in the health sciences field, especially over the last 10 years. The majority of the publications studied trace the history of the concept back to pedagogy and community psychology^36-37. This section is therefore structured into subsections: the first section outlines the history and evolution of the term, while the second contextualizes the concept within the health sciences field and outlines the different definitions of the term and empowerment measures.

Empowerment within other disciplines: pedagogy to psychology

One of the earliest references to the concept of empowerment was within the context of Paulo Freire's philosophy of emancipatory education^8,20, in which empowerment is seen as a response to oppression and social inequality. Later, the concept was explored within community psychology, critical social theory, gender studies, rural economy and finally in health education and promotion^1,35. Regardless of the disciplinary context in which it is used, the literature contains a wide range of meanings, definitions and interpretations of the term, thus transforming empowerment into a multidimensional concept.

One of the characteristics of the concept when viewed through the lens of psychology is that empowerment is an attribute of the community and not the individual. Authors differentiate between empowerment and concepts such as personal agency, self-efficacy, autonomy, self-determination, personal control, self-regulation, all of which have a generally equivalent meaning. The latter characteristics are considered individual attributes, and one can only talk of empowerment when these processes have an impact on the community, that is, when individuals actively participate in the community or organization^38-39.

Empowerment within the health sciences: health promotion and management

When applied to the field of health, the concept of empowerment is diversely used and remains contested. Initially, it was adopted as the backbone of health promotion and later used as a way of increasing patient autonomy and participation in making decisions related to their health. Finally, with the increase in chronic diseases, empowerment began to be used as a strategy to ensure that patients participate in and take responsibility for their health care in order to improve health outcomes and control health expenditure⁷.

The WHO¹ defines empowerment as "a process through which people gain greater control over decisions and actions affecting their health, and as such individuals and communities need to develop skills, have access to information and resources, and the opportunity to participate in and influence the factors that affect their health and well-being".

Definition and dimensions

Certain characteristics that are inherent in the concept of empowerment are common to all the definitions found in the review (Chart 1): empowerment can be seen as an enabling process involving a shift in the balance of power, or as an outcome of this process.

Chart 1
Definitions of empowerment taken from the review - Barcelona, Spain, 2015.

Chart 2 illustrates topics found in the literature that we have classified as dimensions. It should be noted however that the other writers have employed different terms such as themes^13,19,40, elements²², characteristics¹⁷, domains³³, and principles¹⁰.

Chart 2
Dimensions of empowerment found by the review - Barcelona, Spain, 2015.

Empowerment measures

Ten empowerment measures were selected from the literature. The context in which these tools were applied and the operationalized constructs are described in Chart 3. Four tools were developed in the United States^29,31,33-34, four in Great Britain^9,30,32,35, one in Australia¹³, and one in Iran²⁴.

All but one of the tools³¹ are setting (primary health care^9,32 and hospital care³⁰⁾⁾ or condition-specific. With respect to the condition-specific tools, one addressed mental health ³³, two diabetes^24,29, two cancer^13,34, and one clinical genetics³⁵. One of the tools³⁴ addressed two levels of specificity since it assessed cancer patients in virtual spaces.

Chart 3
Measures of empowerment found in the reviewed articles - Barcelona, Spain, 2015.

Discussion

Definition and dimensions

With respect to the first definition in terms of chronological order¹², which regards empowerment as a social process of recognizing, promoting, and enhancing people's abilities to meet their own needs, solve their own problems, and mobilize the necessary resources in order to feel in control of their own lives, it can be observed that it contains three characteristics that are present in other definitions: for empowerment to occur, patients must have prior abilities^9,12, and empowerment is both a process^{3,5,7-9,11,13,16-19} and outcome^3-11,13-19. With respect to prior abilities, only one author⁹ highlights which abilities help patients to accept the disease.

With regard to process, the majority of authors regard empowerment as a communicative process that is developed between health professionals and patients^7,9, involving helping partnerships^20,23, a collaborative^21-22) patient-centered approach¹⁷, and fair and equal relationships¹⁸. The process should be guided by exchange of information involving knowledge and skill sharing^{9,14-15,22,26}, coping strategies^9,13, and should include motivational elements^12,15.

For the majority of authors, self-efficacy is considered an outcome of empowerment, while some^11,14 suggest that it is acquired during the process and that it is a necessary element for patient participation in decision-making, which is seen as the final outcome of empowerment.

Certain authors suggest that the outcome of empowerment are changes in the patient's condition^7,9,21, while others propose that the ultimate goal of empowerment is patient self-management^{8,12,14,21-22}, self-efficacy^8-9, self-care¹⁴, control over the situation^{8-9,13,16,19,20}, participation in decision-making^{10-11,18,20,22}, and shifting the balance of power in health professional-patient relationships¹⁵.

Only one author²³ considers empowerment at both the individual and community level, suggesting that an empowered patient can exert influence on the health system.

The dimensions reflect outcome indicators taken from the definitions, such as participation in decision-making and control, and process indicators expressed in terms of results, such as knowledge acquisition and coping skills.

Only one author⁹ incorporates sharing and enabling others, which is used along the same lines as community psychology. Other authors^13,22 highlighted the importance of sharing the experience of the illness with peers in relation to feeling "more powerful", though did not refer to this as a dimension.

Self-efficacy as an outcome of the process of empowerment is one of the most frequently used concepts in the definitions; however, contrary to the concept of control and participation in decision-making, the term is not referred to as a dimension. This could be due to the fact that, despite being contextualized at different levels, efficacy and empowerment are overlapping concepts that have very similar attributes. Self-efficacy is seen as a concept employed at individual level, linked to personal levels of performance, and which has a clearly psychological component⁴¹, while empowerment has psychological, social and political elements and is used to describe personal variables, care practices and the characteristics of the system^4,33,36.

Measuring tools

Given that the key concept was patient empowerment, only nine out of the 10 abovementioned measures were examined in order to evaluate the conceptual model. Seven tools provide a definition of the concept being evaluated, five define the concept of empowerment^{9,13,24,29,35}, one the concept of enablement³², and one activation³¹. Based on the definitions and dimensions suggested by the authors, the latter two concepts may be considered synonyms of empowerment.

Two tools^9,24 outline the dimensions of the concept and its corresponding indicators. Others describe what could be considered dimensions, but which the authors term as domains³³, principles²⁹, themes^13,31, or concepts³⁵.

For the purpose of the analysis, all were considered dimensions regardless of the terminology used for the operationalization, since the review showed that these terms were repeated in various measures, as shown in Chart 4.

Based on this criterion, the following tools could be said to provide a robust measure of patient empowerment: DES-28, PAM, PES2, GCOS-24, Patient Empowerment in long-term conditions, and the Diabetes empowerment questionnaire.

Conclusion

The findings of this literature review suggests that empowerment is a widely-used concept that has a major influence on health care, and highlights the multiple attempts to design empowerment strategies within education programs, operationalize the concept and develop tools and enable the measurement of empowerment in all its dimensions.

Based on the different definitions and dimensions analyzed by this review, it can be concluded that empowerment in the context of patients with chronic disease is a concept employed at individual level, which is regarded as both a process and an outcome. Empowerment may be seen as an enabling process whereby health care professionals collaborate with patients to help them acquire knowledge and resources and whose outcome is a patient with greater ability to exercise control, manage his/her condition and to make informed decisions.

Empowerment demands a paradigm shift in health care: the challenge lies in how to incorporate the concept into health care practice. Understanding strategies for increasing patient health literacy is not enough to foster empowerment. If the end goal is behavioral change, it is necessary to incorporate motivational strategies.

It is important to highlight the importance of developing patient empowerment measures that capture the above dimensions while encompassing the three levels of the concept: at a basic level, during the process, and at the outcome level. However, this analysis illustrates once again the complexities involved in developing an overarching generic measure translated into different languages that enables comparison between empowerment strategies at international level.

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Publication Dates

• Publication in this collection
  Jul-Aug 2016

History

• Received
  24 Mar 2016
• Accepted
  30 June 2016