Defining an enabling environment for those with chronic disease: an integrative review

Chronic diseases, defined by the World Health Organization as non-communicable diseases [1] generate a transition to acute illness [2] and thus represent one of the main global challenges of the twenty-first century [3]. Chronic diseases are responsible for 63% of deaths worldwide, 29% of which are in people under the age of 60 [1], and are therefore the leading cause of death globally. The growing number of people affected by a chronic condition is a cause of anxiety to public health authorities in terms of health policies and is a concern for healthcare professionals. People with chronic illnesses need to reorganize their lives as their previous ones no longer exist. They are confronted with new information directly linked to specific knowledge of their disease and indirectly to the uncertainty of its outcome [4]. To embrace this, healthcare policies are oriented towards the implementation of means by which people can be encouraged to form a care relationship centred on empowerment and expertise in the narrative of the disease [5]. From a paternalistic approach [6] to a care relationship emphasizing knowledge, decision-making, and the positioning of people, the objective is access to disease management and autonomy [7]. When a person’s environment is favourable, empowerment, defined by Gibson (1991) as a process of increasing someone’s ability to solve their own problems and to mobilize the necessary resources can also be developed [8].

Thus, two elements are important to support those with chronic conditions: a favourable environment and competent professionals whose support is focused on the patient’s needs. The role of healthcare professionals, including advanced practice nurses, is transformed. This review examines the environment of people with chronic disease and the characteristics necessary to develop it into an empowering one.

Helping a person with a chronic disease to achieve autonomy and commitment are addressed in several concepts and theories: capability, empowerment, therapeutic education, care, and health literacy, in addition to commitment [6]. Developing the idea of an environment [9] favourable for the person, whilst allowing them to increase their competency, seems to be a fundamental step in the process of chronic disease self-management.

Empowerment and an enabling environment appear to be particularly helpful elements in the paradigm shift in the management of chronic disease. The concept of empowerment is described in many disciplines, but in the area of health it centres around health promotion and proposed strategies for the management of chronic diseases [10]. The literature document many definitions of empowerment [8, 11]. Empowerment is a process by which control over a patient’s health is undertaken with the aim of improving their capacity to meet their own needs, and thus to take control of their lives [12]. The ability to become responsible for one’s own life is allied to a complex experience involving health professionals, which self-determination and a person-centred approach to care are fundamental.

In parallel, different analyses of this concept have taken the notion forward in various healthcare settings. At the level of community health, empowerment is defined as a sharing and a willingness to give. Ideas of the therapeutic relationship between the community health nurse and the individual, consensus decision-making, power sharing and focusing on strengths rather than weaknesses are described as attributes of this concept [13]. In the setting of in-hospital critical care, this definition is rather focused on managing challenges and overcoming impotence. A translation of “powerlessness”, it represents a starting point but is the opposite of empowerment. To achieve this, the formation of a partnership between the professional and the person in a conducive environment which includes mutual respect are all essential elements for empowerment [14]. In this way, the development of empowerment is based on the capacities of each individual to make his own decisions when he understands his environment, enabling him to regain an active role in his own life [15]. The concept of an enabling environment was proposed in 2005 in the field of constructive ergonomics where employee health and performance is paramount [16]. This concept is inspired by the idea of defined capabilities as a set of functions specific to humans, allowing them to achieve freedom to make their own life choices [17]. From the preventive point of view, Falzon argued that the characteristics of an enabling environment are found in preserving a person’s capacities of action, which are universal in that they take into account differences (diseases, ageing) and developmental as they contribute to new skills promoting autonomy [18]. Fernagu Oudet [19] focuses not on skills but on abilities and capabilities, for which resources are necessary, and are both internal to the individual and external. Fernagu Oudet presents them as conversion factors: individual (gender, age, experience, level of training), social, organizational, and environmental. These factors help to facilitate the implementation of such an environment, but not necessarily invariably.

An enabling environment is characterized by a set of individual, technical, organizational and social conditions that is not deleterious and which allows the individual to attain a sense of freedom and progress [20]. Thus, it gives agency to a person’s power to act by developing the person’s capacities to exercise this power [16, 19]. The capacity for action would be the result of the empowerment process, but only when the necessary resources are available in the environment.

This is an integrative review, allowing a combination of different types of studies and data sources. This methodology follows the rigorous and systematic approach proposed by Whittemore and Knafl [21]. The five recommended phases were followed: identification of the problem, research in the literature, evaluation of the data, analysis, and presentation of the results. This method focuses on the elements of understanding and qualifying an enabling environment for the person with chronic disease [21].

The concept of empowerment is found in half of the articles, that of self-management and self-care appear in the other half. The concept of empowerment has been steadily increasing in the last 10 years and interest in this idea has continued to grow. Most of the articles originate from Europe (n = 21), with the other half divided between America (n = 8), Asia (n = 6) and the Middle East (n = 4). Several research designs were used, including quantitative and qualitative studies, focus groups, expert opinions, and congress feedback. Articles made it possible to describe the experiences and practices of professionals and people in the management of their disease and in connection with the development of an enabling environment. Diabetes is the most studied condition (38%), followed by undifferentiated chronic illnesses (36%), cardiovascular diseases, and cancers. The ages of the populations studied depend on the country of origin, with adults over 18 years old being the most common.

The international literature on supporting the autonomy of a person with a chronic illness often focuses on empowerment. Empowerment, as a definition or process, has been described by several authors as the basis for a person to live a better life [11], where it is a matter of developing self-determination [66]. However, for an individual to achieve autonomy, the available resources must foster advantageous conditions, i.e., an adapted environment as well as the ability to use this power to build skills, determination, and abilities [67].

This integrative review of the literature synthesizes the components that make up an enabling environment, allowing for the characterization of an adaptive environment recognized as enabling for a person with chronic illness, which allows individuals to develop their power to act [68].

The results of this study show that such an environment is a system composed of a set of elements resulting from the context of both the person’s own life and the organization of care for the individual’ illness and particular situation.

If the assessment of needs and the adaptation of responses appear to be fundamental, [24, 27, 46, 52, 69] the accompaniment, support, improvement of knowledge and use of ICTs must also be considered for the person [25, 63, 70, 71]. At the same time, the engagement of professionals and the organization of care interact with those above, without which the system would not be sufficiently balanced to enable the desired autonomy.

In ergonomic terms, the description of a supportive environment focuses on improving employees’ well-being, developing their skills, and improving their performance, thereby creating an environment that enhances the quality of their work, well beyond the goal of autonomy [16]. The enabling environment is conducive to the development of empowerment which includes the ability to act and considers a person’s individual situation [19].

The results of this review underline the need for a person-health professional partnership, even if this interface seems to exist already in the context of supporting people with chronic disease.

In brief, in the analysis of the concept of partnership [72] suggests specific attributes including sharing of the decision-making process, relationship, patient autonomy, power sharing. The first consequence of implementing the partnership is the development of empowerment [72]. The partnership between the person and the professional should be considered with “multimodal” interventions [40], and there should be rethinking on an individual basis while respecting the roles, skills, and capacities of people with chronic disease according to their expectations and ambitions [53]. These interventions should integrate a person’s needs and demands depending on the organization of care, opportunities for the health professional.

Similarly, the enabling environment has been explored in the health sector as part of the work on health autonomy support [73]. The supportive environment is a factor contributing to the development of individual empowerment and therefore autonomy, where the axes of education and coordination of the professional’s functions are described. A supportive environment is therefore conducive to the development of a person capacity for action.

The articles included in the integrative review highlight some of these elements, particularly with respect to the development of skills and knowledge that contribute to a person’s autonomy. People learn in different ways and from those around them. Similarly, the emergence of technology as an information tool assists a relationship between the person and the professional. The coordinating function of professionals has also been emphasized, particularly as it is focused on the partnership between the patient and the health care professional.

The identification of a favourable environment for a person with a chronic disease thus requires a balance between several elements at the level of the individual, the professional, the organization and technology.

It is the connection and interaction of these categories that defines a supportive environment. Communication between the individual and the professional creates a trusting relationship for shared decision making, the use of technology increases knowledge and skills and creates more confidence in self-managing the disease, online social support networks and telemedicine create a different relationship with the physician, and finally, a support network generates a safe place for the individual.

Beyond these interactions, the need for support is solicited by individuals and is defined as reaching out to someone reaching out to someone who will accompany and go forward with them [74]. From this definition, Maela Paul (2012) retains some important elements to qualify support: a relational dimension expressed around the patients’ request for support and a cooperative dimension integrating peers, networks, and family.

It is probably the partnership between the health professional - such as the advanced practice nurse - and the individual that is central to the development of interventions and care strategies in which each stakeholder will define his or her place according to the specific needs of the person with a chronic disease.

The objective of this integrative literature review was to describe the characteristics found in the literature and so allow the qualification of a supportive environment. The literature shows that autonomy support focuses on empowerment, i.e., the development of the person’s power to act. However, to be able to act, the person must encounter favourable conditions. The elements identified concern, on one hand, the care policies centred on autonomy in care, and, on the other hand, the care concepts taught to health students in recent years. In fact, an enabling environment, in the context of chronic disease, is composed of seven categories of elements: needs assessment, caregiving, accompaniment, engagement with professionals, knowledge enhancement, use of ICT and organization of care. This review has highlighted the interaction between the categories whilst consolidating the elements already described in the literature on care proposals and concepts. It underlines the need to take these characteristics into account if we really want to enable people with chronic illnesses to develop their potential for action.

Furthermore, it specifies the essential contours for the development of an environment linked to autonomy and quality of life.