Review articlePatient empowerment, patient participation and patient-centeredness in hospital care: A concept analysis based on a literature review
Introduction
Patient empowerment is a concept that was introduced to allow patients to shed their passive role and play an active part in the decision-making process about their health and quality of life. The concept is rooted in social action and associated with community interests and attempts to increase the autonomy, power and influence of oppressed groups such as the poor, working class residents, women and ethnic minorities [3]. During the 1960s civil rights movement, the concept further expanded by emphasizing the rights and abilities of individuals and communities rather than focusing on their deficits and needs [4]. In the 1970s and 1980s, the idea of empowerment was embraced by the self-help movement [3] and it has continued to grow ever since. Over the last three decades, a series of policy changes paved the way for the international attention patient empowerment currently attracts. Like other supranational organizations, the World Health Organization [5] has developed guidelines that emphasize that patients’ voices should be heard [6]. The emphasis is on assisting people in gaining control over the factors that might affect their health. Both individual and collective empowerment are emphasized as critical to patients’ ability to control their own lives.
Against the backdrop of this desire to empower patients, a tendency towards more patient participation has developed. At the root of this trend are developments in legislative regulations and policies, and evolutions in society at large and health care [7]. Patients or patient organizations are increasingly invited to take an active role in their own care as well as at more strategic levels, such as the organization of care. Patients have come to be seen as experts on their own bodies, symptoms and situations. Patients’ experiential knowledge is now considered to be complementary to professionals’ knowledge [8], [9] and important for the success of the treatment and improving the quality of care [10], [11], [12]. By inviting patients to participate in care decisions, the gap between the professional knowledge and the knowledge by experience can be bridged, while health care becomes more patient-centered [13]. In 1969, Michael and Enid Baling introduced patient-centered medicine in the medical field as “another way of medical thinking”. Doctors were required to include everything they knew about their patient in their diagnosis and treatment. The focus was not only on medical-technical aspects but also on emotional, spiritual and relational dimensions [14], [15]. Since 2001, patient-centeredness is one of the six improvement goals to enhance quality of care in health care systems listed in Crossing the Quality Chasm: A New Health System for the 21st Century [16]. It is viewed as an approach that respects the individuality, values, ethnicity, social background and information needs of the patient. Although patient-centeredness has for decades been the focus of research and health policy developments, there is no real consensus on its definition.
In research literature, patient empowerment, patient participation and patient-centeredness have been buzz concepts for quite some time now. Despite the popularity of these three terms, existing scientific literature offers no univocal definitions for these concepts [17], and it is unclear how they are related [18], [19]. This paper intends to clarify the meaning of the overlapping concepts of patient empowerment, patient participation and patient-centered(ness) by highlighting their interrelationship and distinguishing their antecedents, attributes, consequences and empirical referents, and this with the aim of improving understanding between different groups of health care professionals in hospital care. A second goal of this paper is to suggest a definition as well as a process model for these three key concepts.
A plethora of terms are used in existing literature to refer to the concept of patient empowerment, patient participation, patient-centeredness and the ‘users’. For the purpose of clarity, this paper exclusively uses the term ‘patient’ to refer to users.1
Section snippets
Search strategy concept analysis
The search strategy of this concept analysis included a protocol driven search, combined with a secondary search (snowballing), following the recommendations of Greenhalgh and Peacock [20]. Original articles as well as theoretical and conceptual articles were consulted. We looked at peer-reviewed papers in medical, sociological, psychological and nursing literature. Four databases were searched (Pubmed, Web of Science, Embase and Jstor) with the following keywords entered: ‘patient
Definitions
Patient empowerment is a very complex and paradoxical concept: it is situated at several levels (micro, meso and macro), can be approached from several perspectives (the patient, the health care provider or the health care system) that lead to different interpretations (a theory, a process, an intervention, an outcome, a feeling or a paradigm) and surfaces in several areas (e.g. (mental) health and welfare) and disciplines (psychology, sociology, nursing and social work). Different definitions,
Discussion
We generally found that use of explicit definitions was limited. Clearly distinguishing and separating the concepts is therefore a complex enterprise, as confirmed by a recent study by Fumagalli et al. [107]. This intricate relatedness reflects the historical roots and evolution of the concepts and can be explained by the close connections between the three concepts: patient participation is a strategy to achieve a patient-centered approach in health care and patient-centeredness seems to be a
Conflicts of interest
None.
Funding
None.
Acknowledgements
We wish to acknowledge Peter Gielen and Carine Van Wanseele for proof reading this paper. We also acknowledge Frederik Knockaert and My Pham for their support with optimizing the frameworks.
References (120)
- et al.
The experiential knowledge of patients: a new resource for biomedical research?
Soc Sci. Med.
(2005) - et al.
The experience and impact of chronic disease peer support interventions: a qualitative synthesis
Patient Educ. Couns.
(2013) - et al.
Self-help friendliness: a German approach for strengthening the cooperation between self-help groups and health care professionals
Soc. Sci. Med.
(2014) - et al.
The relation between patient-centeredness and patient empowerment: a discussion on concepts
Patient Educ. Couns.
(2010) - et al.
Patient empowerment: myths and misconceptions
Patient Educ. Couns.
(2010) - et al.
Patient empowerment in theory and practice: polysemy or cacophony?
Patient Educ. Couns.
(2007) - et al.
Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control
Soc. Sci. Med.
(2008) Patient empowerment: emancipatory or technological practice?
Patient Educ. Couns.
(2010)- et al.
Health literacy and patient empowerment in health communication: the importance of separating conjoined twins
Patient Educ. Couns.
(2013) - et al.
Toward a theory of patient and consumer activation
Patient Educ. Couns.
(2010)