A self-care process model for patients with chronic noncommunicable diseases

Abstract

Self-care of patients with chronic noncommunicable diseases is an essential component of contemporary healthcare. The purpose of this paper is to present a novel self-care process model and place it in the broader context of professional care. The extended Event-driven Process Chain approach to process modelling was used, focusing on a detailed overview of sequences of events, connections and activities and other elements/building blocks. A self-care process model was designed. The model is divided into two parts. The first part represents the self-care process when patients are able to manage their symptoms and be independent. The second part includes the process when patients are unable to perform self-care and/or need professional support. By identifying the essential elements of this process and incorporating them into the patients' care process, we can ensure that professional support for self-care creates a dynamic balance in the patients’ ecosystems. Patients with chronic noncommunicable diseases need to make timely decisions about individual aspects of their health and seek professional help. In this way, an optimal level of health and well-being of patients can be achieved. Focusing on the patients’ self-care process could also reduce treatment costs and improve the quality of life of patients. The novel designed model of the process of self-care, with all its essential elements, can be supported by digital technology, especially in the decision-making process and needs to become an important part of healthcare and long-term care systems.

Keywords

community care self assessment chronic illness empowerment process management

Background

Chronic noncommunicable diseases (CNDs) are an increasing burden on societies, especially healthcare systems. Countries are therefore faced with the urgent need to create equitable and sustainable health systems.¹ This encourages interdisciplinary teams to explore opportunities to intervene within the finite resources available to them. One of these is the growing trend of caring for patients in their homes, where they provide self-care in times of health and illness. It is therefore important to gain real insight into the self-care process of patients at home and factors that influence the ability to self-care.² Patients’ self-care is a reserve that is not yet sufficiently recognised and utilized in healthcare systems.³ The reasons for this may be a combination of factors, including limited awareness or inattention by healthcare providers, lack of resources (funding, staff and infrastructure), cultural attitudes and religious beliefs, fragmentation of care and a limited patient- or person-centred approach in which patients are active partners.^4–7

Chronic noncommunicable diseases

CNDs last longer than 1 year, require long-term treatment and may affect patients’ independence, including behavioural and other problems.⁸ In the European Union, 59.8% of people aged 65 and over had a long-term illness or health problem in 2021.⁹ Their characteristics are: complex causality, with multiple factors leading to their occurrence, an extended time of development, sometimes without symptoms, a prolonged course and a slowly progressive disease that can lead to other health complications and the possibility of functional impairment and disability of patients.^10,11 Multimorbidity increases with ageing; most people over 65, more than 50%, have two or more diseases.¹² These trends call for a move away from the traditional single disease model towards a holistic approach to patients.¹³

Majority of people (74%) die from the consequences of CNDs and 86% of these deaths are premature. Most of these deaths (80%) are caused by cardiovascular diseases, cancer, chronic respiratory diseases and diabetes.¹¹ The target is to reduce this number by one-third through preventive measures, timely treatment and health promotion.¹⁴ The basic means of achieving this is empowering individuals, families and communities for self-care.

Self-care

Taking care of oneself, seeking advice for better health and helping oneself in disease is as old as mankind. From its beginnings, a system of health-promoting activities and help in times of disease has evolved.¹⁵ Self-care is part of the life process and involves health-related decisions. Most of these decisions are made by patients themselves without the supervision of healthcare professionals.

The terms self-care and self-management are often semantically confused and they are frequently used interchangeably.¹⁶ Self-care is a broader concept and includes actions in health and disease, with or without professional support.¹⁷ In disease, self-care includes self-management of symptoms and maintenance of health status.¹⁸ It is usually linked to a particular disease.

Patients living at home are unsupervised most of the time and, for example, in Israel receive on average only 1 hour of professional care per year. In the United States only 40% of this amount of time, for the rest of the time they rely on their self-care.¹⁹ Their ability for self-care may decrease due to physical factors (age, gender, genetic predisposition, constitution, health status or disability), psychological and mental factors (lack of awareness, knowledge and skills, inexperience, perceived need for help, perceived helplessness and passivity), and social factors (social engagement, cultural circumstances, healthcare system).^12,20

Levin, as the first theorist and researcher of the self-care process, defined it as a process in which lay people are actively involved in health promotion, disease detection, prevention, and also treatment.²¹ Knowledge of the elements of patients' self-care processes provides professionals with a framework within which they can identify areas in which their interventions can have a positive impact on patients' health and wellbeing.^3,17

A model of the self-care process can be an important basis for the development of protocols and recommendations for more precision healthcare for these patients and the successful integration of digital technologies in this field. Based on a review of the available scientific literature and to the best of our knowledge, a model of the self-care process has not yet been developed. Our self-care process model therefore fills this research gap. This paper describes the developed model of a self-care process of patients with CNDs living in the home environment (hereafter: Self-care Process Model). This model includes processes of structured recording of patients’ measurements and observations that can be part of the electronic health record (EHR). It includes structured processes of documenting patients’ self-measurements (e.g., blood pressure) and self-observations (e.g., pain). This structured data can be part of the electronic health record (EHR). The Self-care Process Model contains key elements of the self-care process, an analysis and a proposal of procedural rules, a graphic model and its detailed description.

Method

We used process modelling for the development of the Self-care Process Model, which is an analytical representation or simply the mapping of processes. This is a critical component for effective process management. A design methodology²² was used that includes three phases: (1) an in-depth analysis of the context, (2) conceptual modelling and (3) logical modelling. This methodology is suitable for highly complex and variable processes in healthcare systems. The first two phases are presented in this paper, the third phase could be a part of digitalisation with the collaboration of local stakeholders.

We created a graphic description of the processes in patients’ self-care and designed the Self-care Process Model. A group of experts approached the modelling of the process based on their expertise and the WHO definition of self-care. The expert group was also involved in the next stage of development, which involved a theoretical and conceptual verification of a multi-criteria decision-making model to support patients' self-care, which is published elsewhere.²³ The members of the group were two nurses (bachelor and master degrees), a general practitioner, a psychologist and a sociologist. The process was also presented to the patients who were involved in the validation of the mentioned decision-making model. Based on their feedback, we created a notation of the Self-care Process Model.

The tool ARIS Express 2.4e²⁴ was used, which allows model verification and transformation into another process modelling language.²⁵ With an extended Event-driven Process Chain (eEPC) approach, we focused on a detailed overview of event sequences, connections and activities, including the recording of other elements or building blocks of the process. This allows a more detailed breakdown of a single function in the function tree and easier visualization.²⁶ The process model consists of basic elements (function, event and logical operator) and additional entities (organizational unit, roles, person).²⁷ Each process widget was named, meaningful connections were determined, and the sequence of events and activities was identified. Logical operators were used to represent the progress of the process. We followed 7G recommendations²⁸ to achieve a better quality of process description and standard in terms of the syntax, semantics and pragmatics of criteria.²⁶

The draft version of the model was validated by a group of experts consisting of three nurses with different levels of education and working experience. The experts were invited to a focus group meeting, which took place on September 9, 2019. They were first introduced to the modelling approach, purpose and aim of modelling the process of patients’ self-care with CNDs. They were provided with a printed version of the graphic and textual description of the process to facilitate their understanding of the model. An interactive presentation was given by the researcher. During the discussion of each stage and element of the process, we observed their comments and encouraged opinion formation on the appropriateness of the model, and modified the elements of the process model until consensus was reached within the expert group. The session lasted 50 min. The final version of the Self-care Process Model was formed based on their comments and suggestions.

Prior to conducting the research, we obtained a positive opinion from the Ethical Commission for Research at the University of Maribor, Faculty of Organizational Sciences, no. 514-2/2019/1/902-DJ.

Results

The elements of the Self-care Process Model were designed based on a literature review and the researcher’s expertise. We included in this model existing processes and service providers operative in Slovenia and which are comparable to healthcare in other countries. The proposed Self-care Process Model does not provide all detailed elements, but fundamental elements and suggestions of starting points for integrated digital support to patients or support from family members or lay carers (hereafter: patients). Self-care overlaps with two main processes in healthcare: the medical treatment process, which is carried out by physicians, and the nursing process performed by nurses (Figure 1). There is an overlap in processes, depending on an individual's health condition and level of independence.

Figure 1.

Self-care and healthcare processes.

The Self-care Process Model consists of two parts: the first one is the main process of self-care when patients can self-manage the disease symptoms and are independent in self-care or with the support of lay carers (Figure 2), while the second part represents sub-processes when patients need healthcare services (Figure 3).

Figure 2.

The Self-care process model.

Figure 3.

Sub-process of the self-care - healthcare.

The initial event of the patients' self-care process is the occurrence of CNDs (Figure 2). This event is followed by a systematic approach to self-assessment of the severity of expressed symptoms and the ability to manage and perform self-care. The assessment of perceived symptoms and/or signs may be performed by patients themselves. In this process, patients can be supported by a digital decision-making model to make competent and transparent decisions about health-related challenges. There are two possible pathways leading out of this activity. The first (Figure 2) is for patients to be able to self-care and not face an exacerbation of health that they cannot manage.

The self-care process of an independent patient

Patients independently formulate the self-care plan, which can be part of a healthcare plan. Healthcare professionals at the primary level, especially nurses who are in contact with patients, support them. The self-care plan includes recommendations on aspects of health and well-being, including healthy lifestyle and health-related behaviour (eating and drinking, sleeping, exercising and working, social engagement, psychological and spiritual support), treatment and rehabilitation plans, adaptation of the environment, use of various digital tools to support health etc.

Patients perform self-care independently or with support. Evaluation of self-care activities takes place at the same time. At this stage, nurses provide the necessary support, and monitor and evaluate the activities performed. Based on this, patients determine the appropriateness of the self-care independently and/or in collaboration with nurses. When appropriate, patients perform activities on an ongoing basis.

In the case of self-detection of symptoms indicating a deterioration in health, patients must take appropriate action in time and seek professional help as needed. When self-care is inadequate due to changes in the health status, the self-care process returns to the beginning of the process. This supports patients’ ability to review whether they need treatment for CNDs or an acute condition and make an appropriate decision.

Self-care may be inadequate because patients are unable to care for themselves. Nurses carry out an assessment and develop an empowerment plan. Nurses play a crucial role in different settings to ensure continuous care and support to self-care. They are coordinators of interdisciplinary teams and networks; they therefore integrate other providers (health promotion, health education etc.) to ensure a holistic approach to patients. Self-care may be inadequate due to environmental and/or internal psychological, social processes or lack of knowledge and skills. These barriers need to be identified and addressed accordingly in three main areas: psychological support, environment and equipment, knowledge. We can then ensure that the patient’s needs are met and empower the patient for successful self-care.

The presence of CNDs can lead to psychological problems for patients: lethargy, lack of motivation and depression. Because of the health problems and the management of symptoms, they may feel excluded from society and are therefore often lonely and without social support. This can become an even bigger problem if healthcare systems are geared towards services (e.g., from private providers) that are paid for by health insurers or out of pocket for the treatment rather than the prevention of disease. This can result in leaving the system that better ensures continuous professional support. We need to identify these barriers in time and provide informal and professional support to patients in collaboration with other professionals, peers, volunteers, NGOs’ representatives and the local community to address this issue.

The reason for inadequate self-care may be an inappropriate living environment and inadequate or deficient assistive devices that would enable patients to provide independent self-care. Patients can adapt the physical environment (e.g., handrails, thresholds, sensors), and ensure medical devices and digital solutions. This may include a change of residence to ensure optimal patient independence. Patients are also instructed in how to identify resources that can assist them with self-care in their social environment.

If patients do not have sufficient knowledge or information, or feel they are not adequately skilled in self-care, nurses make plans to acquire them. The goal is to improve health literacy and empower patients for self-care. They are encouraged to acquire skills (e.g., taking medications and following a treatment plan, using medical devices, using digital health technology), guided to make health-related lifestyle changes, and empowered to play an active role in addressing physiological, psychological and social challenges. Health education and health coaching are used judiciously to achieve this.

After barriers are removed, a reassessment of the adequacy of the self-care follows. This part of the process is repeated until barriers are removed or until the patient’s self-care is appropriate.

The end of the process of patients’ self-care at home is based on a determination that it is no longer possible or necessary to perform self-care. Nurses coordinate activities to help patients take the appropriate next steps.

The self-care process if professional help is needed

When patients need help due to changes in health status and can no longer manage symptoms and thus self-care, the medical treatment sub-process is initiated and continues until the health status stabilizes (Figure 3). The key in such cases is the timely decision by patients that they need professional help. A patient’s self-care decision-making model can help in the selection of appropriate and timely support from healthcare professionals. This can occur in three different healthcare settings or levels, depending on the severity of the symptoms. Some parts of the self-care process occur in parallel or in logical sequence, which is continuous in most cases, but not always to the same extent.

When patients need specific nursing interventions at home, they contact nursing services, which, together with patients and others (e.g., family doctor) provide nursing and other healthcare interventions. Patients may need to visit a primary care practitioner (e.g., family clinics or can use telehealth services) if symptoms predict a deterioration in health. They can get treatment there and also preventive intervention and health education.

If life-threatening symptoms occur, patients should recognize that they need immediate emergency medical attention. This is initiated by going to the nearest emergency medical centre or calling the emergency number. Emergency medical teams treat (in person or as telemedicine services), provide specific information and health education to prevent a further deterioration in health and unnecessary visits to emergency centres. When patients' health is stable, they can be discharged. In some cases, they are transferred to hospitals for further treatment. Patients' journey through healthcare systems are defined by their needs and treatment protocols.

Once treatment is completed, the process continues to determine the appropriateness of self-care, including the self-management of diseases. This ensures that all information and guidelines received by patients during the treatment process are meaningfully implemented in their own adapted process of self-care at home.

Discussion

The proposal of the Self-care Process Model aims to emphasize patients’ activities in daily self-care. This places them at the center of their care and makes them an important part of different professional teams. Defining the patient’ self-care process allows more structured and continuous professional self-care support for different CNDs. The process approach to (self-care) reduces the possibility of errors and increases the quality of services. It also ensures continuous improvement and adaptation of services to meet the needs of patients and their families. Self-care is a continuous process, regardless of where patients are located. It should be supported by all healthcare professionals who are in contact with the patient, especially nurses, who spend most time with them. General practitioners also have an important role in supporting patients for self-care. Patients note a lack of support for self-care from healthcare professionals, including general practitioner.^7,29 Although general practitioners identify a low adherence of patients to treatment for CNDs, which could be reduced by empowering patients to self-manage, advice from general practitioners is not consistently given.³⁰ Further research and promotion of this area among the various stakeholders, including patients, providers and various institutions and policy makers, is important and the proposed model could serve as a facilitator.

A process-based approach is already used in healthcare and has a positive effect on the management of CNDs³¹ but there is no defined process in the literature of self-care for patients with CNDs at home. It would be useful to adapt the defined professional processes so that they are applicable to non-professionals (patients) and to include all elements necessary to ensure the quality, efficiency and connectivity of the processes. With a defined self-care process, patients could feel more competent and confident about taking care of themselves. The proposed Self-care Process Model not only focuses on managing symptoms of diseases but includes important elements of preventive activities that can have a positive impact on patients' health and therefore independence in activities of daily living. With the use of the proposed model, patients would therefore require fewer professional services because self-care is always inversely related to professional care. This is important due to the global staff shortage in healthcare.

A patient-centric approach is used in process modelling in the development of the Self-care Process Model. In guiding and supporting patients to use digital technologies to take better care of themselves, it is also necessary to ascertain their level of digital health literacy. There is no point in planning to use digital technologies if they are unavailable or patients reject them due to a lack of knowledge, skills or motivation to use them. With the more intensive incorporation of digital technologies, we need to redefine the elements of self-care, since they not only enable access to healthcare services but also influence other aspects of self-care.³²

Due to extensive digital development also in the field of healthcare, health and well-being, the available technology can be used to provide efficient professional support to patients with CNDs and empower them to self-care. Integrating the proposed self-care process into national health information systems will better ensure continuous support for the self-care process. We believe that the proposed process is critical to the delivery of telehealth services, since it reminds both providers and patients of the importance of their active role. By integrating individual digital solutions into the self-care process, such as digitally supporting patients in making decisions about self-care (see²³) or self-managing a specific condition (see,³³) patients will feel more confident and be able to take better care of themselves. With the support of digitally literate health professionals, patients would be able to choose the tool or digital support that best fits their health status, health and well-being goals and lifestyle, so that they can take optimal care of their health and well-being.

Patients empowerment is one of the key elements of successful and effective self-care.³⁴ Nurses are at the forefront at all levels of the health system and are a key point of contact for vulnerable patients with CNDs in order to empower them for an active role. They are change agents, educators and highly influential in promoting early detection of potentially harmful conditions.³⁵ Their role is particularly important as case/care managers for patients with CNDs in different settings.^36,37 Due to the nature of their work, nurses are the professionals who are competent to support and empower patients in self-care. Their role is also to involve in their care others from the individual’s social network and other professionals (e.g., family doctor) when necessary. The Self-care Process Model therefore includes interventions to remove barriers and empower patients for optimal implementation of self-care in terms of the patient’s ability and to assure its continuity.

Decision-making is a very important part of healthcare.³⁸ Patients, especially those with multimorbidity, are even more reliant on self-care. It is therefore crucial for them to identify any deterioration in health or life-threatening situations and to make the right decisions in time. This is included in the proposed Self-care Process Model in the symptoms assessment phase, to support patients in making timely health-related decisions. Patients’ decisions are usually based on their intuitions, informal knowledge and willingness and ability to care for themselves.

Patients with CNDs, with appropriate professional support, can become experts in their own health because of their experience of living with the disease. They need guidance from professionals to gain knowledge, skills and confidence in their abilities and to provide support in decision-making. This can also be aided by using various already existing digital tools, such as tablet-based education. In this way, they gain insight and skills about health and diseases. Patients’ opinions are not desired in traditional hierarchical healthcare. However, their potential to meet the growing needs of patients with CNDs in society is increasingly valued.³⁹ The proposed model supports the role of patients as experts and positions them as equal members of the healthcare teams. Optimized interventions by professionals enable patients to manage their health sufficiently professionally. This is an important contribution to the quality and sustainability of activities at the individual, environmental and societal levels.

The growing global need for healthcare transformation is focused on primary healthcare. The strategies for comprehensive change in this area, in addition to seizing opportunities for change and encouraging experimentation while managing risk, include partnership for innovation, with a focus on people in communities.⁴⁰ Self-care is a key element in healthcare reform and policy transformation. Its complexity and the difficulty in establishing evidence-based services⁴¹ are among the challenges. Process-oriented interventions offer a valuable solution to supporting all stakeholders in the care of patients with CNDs and also in the implementation of guidelines.⁴² We suggest integration of the Self-care Process Model into existing healthcare processes on different levels of healthcare, which could become an essential part of change in the management patients with CNDs, particularly those living in home settings. This could have a positive impact on society, the optimal use of resources in healthcare and on the quality of life of patients and their families. The proposed generic model can be used for various CNDs (e.g. cardiovascular diseases, chronic respiratory diseases, diabetes), especially those that require active patient involvement to prevent deterioration and can be easily managed through patients’ daily activities and by timely decisions. Furthermore, it can be interlinked with or integrated in other professional processes, digital solutions and is transferable to other patient ecosystems.

Conclusions

We propose in this paper a Self-care Process Model that is the first model of its kind in the field of care of patients with CNDs. It provides a theoretical starting point for further research and is an important foundation for designing optimal and continuous formal support for patients and their lay carers in the daily practice of interdisciplinary teams. The model represents a theory of practice that can be successfully used in theory, practice and through further research, following the principles of spiral learning, to generate new knowledge.

The proposed Self-care Process Model has all the elements of the professional process. Patients take ownership of their care and responsibility for decisions and interventions related to their health and well-being. Their expertise is not as deep and broad as that of professionals; they therefore require optimized, individualized, holistic self-care support and guidance.

The digitalisation of the Self-care Process Model provides an opportunity for better systematic professional support for patients. This opens up the opportunity to research and develop cost-effective interventions and enables more personalized care. Evidence-based and precision healthcare services can be developed based on systematically collected behavioural data from patients and their health-related behaviour can be improved through personalized health education and other preventive interventions.

Further research is needed to reliably operationalize and standardize the Self-care Process Model and explore ways to implement it in various patients ecosystems.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Marija Milavec Kapun

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