Chronic illness experience in the context of resource-limited settings: a concept analysis

ABSTRACT

Aim

This review describes the ways in which individuals experience chronic illnesses in resource-limited settings; to define the concept and understand its attributes, antecedents and consequences.

Methods

A comprehensive analysis of the databases CINAHL, PubMed and Google Scholar was conducted. During literature search the following limits were applied: articles published in English with available full-text; articles that focused on living with chronic illness in adults from the patient’s perspective.

Results

The following three attributes of chronic illness experience were identified: transformational experience, acceptance and self-management. Prominent predisposing factors (antecedents) were: genetic inheritance, malnutrition and poverty, high levels of stress and unhealthy lifestyle. The most dominant consequences were as follows: impact on quality of life; self-management burden; burden to others and economic stressors.

Conclusions

The findings underscore the need for health-care professionals to understand the chronic illness experience in the context of resource-limited settings and its consequences. The greater insights into the concept of chronic illness experience in resource-limited settings will guide nurses to support people in the realities of chronic illness experience in resource-limited settings in developing countries. This knowledge can guide nurses in providing competent care to chronically ill individuals, including meeting their individual needs with such illnesses.

KEYWORDS:

• Chronic illness
• concept analysis
• resource-limited settings
• developing countries
• Rodgers

Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.

– Glenn Schweitzer

1. Background

The World Health Organization (WHO) (2005) defines chronic diseases as conditions that persist for an extended period of time and require a long-term and systematic approach to treatment. These conditions are usually not fully responsive to treatment and may limit activities of daily living (National Center for Chronic Disease Prevention and Health Promotion, 2019). WHO (2018) recognizes the following as chronic diseases: non-communicable diseases (cardiovascular disease, cancer, and diabetes); persistent communicable diseases (HIV/AIDS); certain mental disorders (depression and schizophrenia) and on-going impairments in structure (amputations, blindness, and joint disorders).

Chronic illnesses are a serious threat to health and longevity in developing countries. It is well described that nearly 80% of premature mortality due to chronic disease affects low-to-middle-income countries (Heine & Hanekom, 2023). In these environments, the limited resources available for healthcare and social support systems exacerbate the challenges faced by individuals with chronic disease (Oni & Unwin, 2015). These populations are also more vulnerable to the development of multiple chronic conditions due to a higher prevalence of risk factors such as poverty, poor nutrition, and limited access to health education and services (Ingram et al., 2021; Sommer et al., 2015). In such settings, the management of chronic non-communicable diseases is very poor (Abbas, 2017; Cohen et al., 2010; Makwero, 2018). Complications are not avoided, identified, or managed (Kasiya et al., 2017). This negatively impacts on living with chronic illness by individuals. Studies have shown that it is difficult to manage any chronic illness in resource-challenged settings (Brundisini et al., 2013; Oloyede, 2013).

Most studies in the body of literature have addressed peoples’ experiences of living with different chronic diseases (Ambrosio et al., 2015; Davis & Magilvy, 2000; Fraser et al., 2006; Joachim & Acorn, 2016; Sav et al., 2015; Thorne et al., 2002; Whittemore & Dixon, 2008). The presence of chronic illness increases the risk for impairments in function, limitations in activity, restrictions in participation, and reductions in health-related quality of life including mental health (Calderón-Larrañaga et al., 2019). Hence, it is important to better understand the chronic illness experience in resource-limited settings in developing countries in order to improve nursing care in such contexts. Nurses will be able to support people with chronic illnesses and successfully enhance health outcomes and quality of life for people living with chronic illnesses. Therefore, this concept analysis sets out to analyse how the chronic illness is experienced by individuals in the resource-limited settings of developing countries.

2. Methods

Rodgers (2000) seven-step concept analysis was performed to investigate the concept as follows: (a) identify and name the concept of interest; (b) identify the surrogate terms and relevant uses of the concept; (c) select an appropriate realm (sample) for data collection; (d) recognize attributes of the concept; (e) ascertain the references, antecedents, and consequences of the concept; (f) identify concepts related to the concept of interest; and (g) generate a model case of the concept.

3. Search strategy

A comprehensive analysis of the databases CINAHL, PubMed and Google Scholar was conducted. The terms were combined with “OR” Boolean operators for the related search terms referring to the same concept and with “AND” for the different search groups. Additionally, some words were truncated to encompass all possible endings. Detailed search terms are supplied in Table I.

Table I. Search terms.

Database	Terms used
CINAHL	illness experience OR liv* experience OR liv* with OR adjust OR transition OR chronic illness experience AND chronic illness* OR chronic disease OR long term condition* OR chronic condition* OR long term illness AND resource limited setting* OR resource poor setting* OR low-resource* setting OR poverty
Google scholar	Chronic illness experience AND resource-limited settings AND developing countries
PubMed	((((“resource limited settings” OR “resource poor settings” OR “low-resource setting”))) AND ((“Chronic Diseases” OR “Disease, Chronic” OR “Diseases, Chronic” OR “Chronic Illness” OR “Chronic Illnesses” OR “Illness, Chronic” OR ‘Illnesses, Chronic” OR “Chronically Ill”))) AND ((“illness experience” OR “lived experience” OR “living with” OR adjust OR transition))
	(((“Chronic Disease”[Mesh] AND (“Life Change Events”[Mesh] OR “Personal Narratives as Topic”[Mesh])) AND “Poverty”[Mesh] OR poverty areas

3.1. Inclusion and exclusion criteria

This review chose articles that focused on living with chronic illness in adults from the patient’s perspective. Studies in the English with the available full-text were included in this study. Articles that focused on living with chronic illness from the family’s or professional’s perspective were excluded. In addition, articles were excluded if they mentioned mental illness as a chronic condition.

The electronic search yielded 105 published articles (Figure 1). A total of 65 articles were removed because they were irrelevant and some were duplicates. Forty (40) full-text articles were assessed for eligibility. Finally, a total of 20 articles were included and reviewed for this concept analysis. The content of each paper was analysed, looking for attributes, antecedents and consequences (Rodgers, 2000 cited by Foley, 2017).

Figure 1. The PRISMA flow chart.

3.2. Data extraction

All the researchers were involved in the analysis. E.N extracted data from the selected papers with the assistance of the Assistant Librarian, Kamuzu University of Health Sciences. The following information was extracted from articles: description of the concept; surrogate terms and relevant uses of the concept; attributes of the concept; antecedents and consequences; and related concepts to the concept of interest. G.M. checked the extracted data and made corrections/additions. Table II presents some of the studies that were included in this concept analysis (Table II).

Table II. Table showing the eligible papers for analysis.

S/N	Article	Title	Study setting	Study Aim
1	Brundisini et al. (2013)	Chronic Disease Patients’ Experiences With Accessing Health Care in Rural and Remote Areas.	Ethiopia	To systematically review and synthesize qualitative research on the advantages and disadvantages rural patients with chronic diseases face when accessing both rural and distant care.
2	Kasiya et al. (2017)	The challenge of diabetic foot care: Review of the literature and experience at Queen Elizabeth Central Hospital in Blantyre	Malawi	To assess the nature and epidemiology of diabetic foot disease and how it may be prevented and managed, with an emphasis on studies from Africa
3	Kristjansdottir et al. (2018)	Personal strengths reported by people with chronic illness: A qualitative study	Ethiopia	To explore what people with chronic illness describe as their strengths relevant to their health and well-being
4	Oloyede (2013)	The Management of Diabetes among the Rural Poor in South Africa	South Africa	The objective of this study was to examine the management of diabetes mellitus Type 2 among the rural poor in South Africa
5	Pastakia et al. (2017)	Diabetes in sub-Saharan Africa – from policy to practice to progress: Targeting the existing gaps for future care for diabetes.	Sub-Saharan Africa	To contextualized strategies for the prevention, identification, management, and financing of diabetes care within this population
6	Wang et al. (2016)	The economic burden of chronic non-communicable diseases in rural Malawi: An observational study	Malawi	To fill this existing gap in knowledge by estimating both the household direct, indirect, and total costs incurred due to CNCDs and the economic burden households bear as a result of these costs in Malawi.
7	Zgibor and Songer (2001)	External Barriers to Diabetes Care: Addressing Personal and Health Systems Issues.	Ethiopia	To investigate patients’ experience and perils of living with chronic illnesses
8	Angwenyi et al. (2018)	Patients experiences of self-management and strategies for dealing with chronic conditions in rural Malawi	Malawi	To explore self-management practices of patients with different chronic conditions, and their strategies to overcome care challenges in a resource-constrained setting in Malawi.
9	Vancampfort et al. (2017)	Perceived Stress and Its Relationship With Chronic Medical Conditions and Multimorbidity Among 229,293 Community-Dwelling Adults in 44 Low- and Middle-Income Countries	Low- and Middle-Income Countries	To assess the association of chronic medical conditions and multi-morbidity with perceived stress among community-dwelling adults in 44 low- and middle-income countries
10	Nkambule et al. (2021).	‘This disease would suit better those who have money’: Insulin-Treated Diabetes Illness Experience in rural Malawi.	Malawi	To explore the experiences of people living with insulin-treated diabetes in rural Malawi.
11	D. B. Cohen et al. (2010)	A Survey of the Management, Control, and Complications of Diabetes Mellitus in Patients Attending a Diabetes Clinic in Blantyre, Malawi, an Area of High HIV Prevalence.	Malawi	The aim of this study was to describe the current status of diabetes care in an urban diabetes clinic in Malawi and the prevalence of human immunodeficiency virus (HIV) in this population, investigating possible associations between HIV and diabetes.
12	Bukhsh et al. (2019)	Association of diabetes knowledge with glycemic control and self-care practices among Pakistani people with type 2 diabetes mellitus. Diabetes, Metabolic Syndrome and Obesity: Targets and Therapy	Pakistani	This study explored the relationship of disease knowledge with glycemic control and self-care practices in adult Pakistani people diabetes (PWD).
13	Sayeed et al. (2020)	Impact of Diabetes-related Self-management on Glycemic Control in Type II Diabetes Mellitus.	Pakistani	The aim of this observational study was to evaluate the impact of diabetes self-care activities and behaviors on glycemic control in people with diabetes.
14	Salleh (2008)	Life Event, Stress and Illness	Malaysia	To investigate if there is evidence of a direct cause-and-effect relationship between the immune system changes and the development of cancer.
15	Pengpid and Peltzer (2018)	The Impact of Chronic Diseases on the Quality of Life of Primary Care Patients in Cambodia, Myanmar and Vietnam	Cambodia, Myanmar and Vietnam	To investigate the impact of a variety of chronic diseases on quality of life (QoL) in primary health care patients in three Southeast Asian countries (Cambodia, Myanmar, and Vietnam).
16	Wonde and Baru (2019)	The perils of chronic illness: Patients lived experience and societal reactions in central and southwestern Ethiopia.	Ethiopia	To explore the illness experience of patients with chronic illness
17	Davis and Magilvy (2000)	Quiet Pride: The Experience of Chronic Illness by Rural Older Adults.	Rural Colorado	To explore how chronic illness is experienced and managed by rural Hispanic and non-Hispanic older adults and their families, and to identify how the health care system and community facilitate or inhibit the ability to manage chronic illness in a changing health care environment.
18	Gill et al. (2008)	A sub-Saharan African perspective of diabetes.	Sub-Saharan Africa	To emphasize unique perspectives of diabetes in sub-Saharan Africa
19	Heine and Hanekom (2023)	Chronic Disease in Low-Resource Settings: Prevention and Management Throughout the Continuum of Care	Low-resource settings	To understand the chronic disease in low-resource settings
20	Javathilaka et al. (2020)	Do chronic illnesses and poverty go hand in hand?	Sri Lanka	To investigate the impact chronic illnesses on the level of poverty.

4. Findings

4.1. Description of the concept

Illness is described as a situation when an individual consciously feels that he or she is unhealthy, sometimes as a result of discomfort and pain. Therefore, illness is the lived experience of a diseased condition (Amzat & Razum, 2014). It is recognized in medical sociology that illness and disease are differentiated. “Illness” refers to people’s subjective definitions of health problems, while “disease” refers to professional or objective definitions of health problems, which are based on signs and symptoms (Scambler & Scamber, 2015). The value of this distinction is that it allows healthcare professionals to acknowledge that people can be ill without having a disease and can have a disease without being ill (Scambler & Scamber, 2015). Chronic illness is described as a disease or injury that has lasted more than 6 months, causing the individual to significantly alter his or her day-to-day activities. The phrase “illness experience” refers to how people define and adjust to perceived interruptions in their health (Scambler & Scamber, 2015). Living with a chronic illness often means experiencing chronic treatments and regular multidisciplinary monitoring as well as a profound life-changing experience that may impact all aspects of a patient’s life (Forestier et al., 2019).

4.2. Surrogate terms and relevant uses of the concept

Surrogate and related terms for chronic illness experience include loss, chronic sorrow, uncertainty, incurable illness, affliction, career and prolonged trajectory.

Literature attests that a person with a chronic illness is forever walking down a dividing line between the past and the future (Jackson, 2014). Looking backward, he can see everything illness has taken from him or forced him to relinquish. Looking forward, he can’t see anything quite clearly. There’s no going back to the past, and the future is uncertain. Jackson (2014) adds that the experience of chronic illness is invariably one of accruing myriad losses, the depth and breadth of which depend on the severity of the illness and the limitations it imposes. The first and most obvious is the loss of good health. Depending on the nature of the illness, these losses may include comfort, sexual function, career, income, self-efficacy, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control, independence, mental health, hope, dignity, and certainty. In the most extreme cases, one illness may bring about all of these losses, sometimes over and over again in many ways. The literature refers to repeated losses as chronic sorrow, which has lately been reported in connection with chronic illness (Ahlstrom, 2007).

Living with a chronic illness, such as diabetes mellitus, has been described as an uncertain life. Because of the illness’s unpredictable progress, individuals may be uncertain about their lives and future (Nkambule et al., 2021). Furthermore, chronic illness has been described as a personal experience of living with the affliction (Martin, 2007). The word incurable illness is recognized as a synonym for chronic illness. Chronic illnesses are typically incurable illnesses or ailments that necessitate continuing medical attention and have an impact on a person’s everyday life (Chen & Lin, 2018; Chiaranai et al., 2018; Newland et al., 2016). The chronic illness experience is also described as a career or work because the patient must live with the illness for the rest of their lives (Grue, 2016).

The following describe represents some of the surrogate terms of chronic illness:

To apply the term chronic illness, there is a disease with a prolonged trajectory for which there is no curative treatment, and when the condition impacts the persons’ life and functioning and requires monitoring and specific management measures. (Larsen, 2019)

4.3 Attributes of the concept

Attributes are the core defining qualities of the concept (Rodgers, 2000 as cited by Foley, 2017). In this review, attributes were identified following two guiding questions, namely: How does the author define the concept?; What ideas does the author discuss regarding the concept of chronic illness experience in resource-limited settings? Studies have demonstrated that the concept of chronic illness experience has the following attributes: transformative experience, acceptance, and self-management.

Transformative experience

Transformation in chronic illness experience is described as an ongoing process, entailing growth and learning as new experiences occur (Paterson et al., 1999). Paterson adds that transformation is the process of learning to live with a chronic illness that would lead to adaptive best experience of living with a chronic illness. It is assumed that transformation represents a special form of transition from one way of being to another that is more suited to life with a chronic illness (Paterson et al., 1999). In particular, chronically ill patients who have gone through transformative experiences will be able to: respond to illness-related challenges; demonstrate a more positive outlook on life; acceptance of illness and an increased expertise which allow individuals to challenge health professionals about their routines (Kristjansdottir et al., 2018; Paterson et al., 1999). Evidence suggests that when chronically ill people have experienced transformation, they deal with the chronic disease very naturally, believing that the fact of having the disease does not make them less able or qualified to get the best out of their lives (Dubouloz et al., 2012). In the context of chronic illness experience, related concepts of transformation include “mastery” and “hope” (Paterson et al., 1999).

Acceptance

Acceptance is identified as one of the attributes of the chronic illness experience. In the literature, this attribute is defined as being aware of the illness and ready to cope with the changes that the illness causes (Kralik, 2002; Portillo et al. 2012). Acceptance is viewed by individuals experiencing chronic illness as not “giving in” but coming to terms with the reality of illness and its demands. There are two perspectives on acceptance as a concept. According to the first perspective, acceptance is characterized by the absence of feelings of anger or denial (Kralik etal. 2004). This is because the person acknowledges the fact that he/she has a condition and is ready to cope with the adversities related to it (Kralik, 2002; Portillo et al. 2012). The second perspective is that a chronically ill individual demonstrates feelings of anger and periods of hopelessness (Davis & Magilvy, 2000). Despite the contradictory messages that have been documented in the literature as regards this attribute; this concept analysis supports the first perspective of acceptance. This is the case since it’s only when a person has accepted his or her illness and is ready to cope with the illness and they will be able to move on to another attribute of the chronic illness experience, namely self-management.

Self-management

Self-management in chronic illness experience is described as the client’s ability to have some knowledge about the illness itself, adhere to a plan, and actively participate in the decision-making that the illness involves (Cudney et al., 2005). Cudney notes that self-management requires people with chronic illnesses to be their principal caregivers, with support from health professionals who act as their consultants. Documented self-management solutions in chronic illness experience include the following: setting achievable goals; taking action such as modifying diets and exercise programmes; listening to the body as much as possible about the disease; seeking knowledge and help; trusting in their judgement; striving to stay psychologically healthy by taking each day as it comes; reducing stress and praying for the best; putting themselves high on their priority lists and recognizing the limitations of chronic illness (Cudney et al., 2005; Kristjansdottir et al., 2018). Kristjansodottir argues that these self-management solutions can be demanding as people need to learn about their condition and medications, manage their symptoms and emotions, as well as making recommended lifestyle changes.

Studies have shown that in order to enhance self-management practices among individuals with chronic illnesses; interventions need to take individuals into account to promote self-management behaviours (Bukhsh et al., 2019; Sayeed et al., 2020). Self-management as an intervention, has been shown to reduce chronic illness-related complications, and contribute to enhancing overall quality of life in people with chronic diseases (Sayeed et al., 2020) and is advocated as a universal strategy (Angwenyi et al., 2018). It is recommended that healthcare professionals develop interventions to facilitate good self-management of diabetes among rural people (Oloyede, 2013).

Grady and Gough (2014) contend that chronic illness self-management occurs within the context of other individuals and influences, rather than in isolation. Supporting people’s self-management is an important technique for lowering the burden of living with chronic illness. The relationships between individuals and their health care providers (mainly nurses), friends, the community, and family members are critical to its success (Grady & Gough, 2014). People suffering from chronic illnesses rely heavily on their families for support. Individuals with higher degrees of family support are more adherent to self-management and have better control over their chronic illnesses (DiMatteo, 2004; Strom & Egede, 2012).

4.4. Antecedents and consequences

4.4.1. Antecedents

Antecedents are situations, events or phenomena that precede a concept of interest (Rodgers, 2000 as cited by Foley, 2017). In this inquiry, antecedent events were identified by reviewing the literature and highlighting key information from the papers that alluded to events that happened before the process. Four antecedents of the concept of chronic illness experience have been identified as follows: genetic inheritance; malnutrition and poverty; high levels of stress and an unhealthy lifestyle. These have been identified as the main reasons for an individual to experience chronic illness.

Genetic inheritance

The genes are known to play a role in chronic disease predisposition (Kujala, 2011). The genes responsible for causing chronic illness may be inherited and may be passed down to succeeding generations. Family history is a well-known risk factor for developing many common chronic diseases, such as diabetes, asthma, and coronary heart disease (CHD), and reflects inherited genetic and shared environmental contributions to disease (Rasooly et al., 2019).

Malnutrition and poverty

In addition, Pastakia et al. (2017) identified that despite the positive link between obesity and diabetes as one of the chronic diseases; there is a unique subtype of type 2 diabetes, malnutrition-related diabetes. This is manifested in people who are normal or underweight (BMI ≤25) and develop the disease. This form of type 2 diabetes is common primarily in rural sub-Saharan African individuals. It is contemplated that this form of the disease is caused by long-term malnutrition that eventually leads to pancreatic calcification (Gill et al., 2008). Thus, people who live in poor-resource settings and are underweight could experience the chronic illness imposed by type 2 diabetes. Furthermore, WHO (2005) upholds that chronic diseases and poverty are interconnected in a vicious cycle. According to the WHO, in almost all countries, it is the poorest people who are most at risk of developing chronic diseases and dying prematurely.

The following statement reports this antecedent.

Poor people are more vulnerable for several reasons, including: greater exposure to risks, material deprivation and decreased access to health services, psychosocial stress, and unhealthy living conditions. (WHO, 2005)

Once the disease is established, poor people are more likely to suffer adverse consequences than rich people. Chronic diseases can cause poverty in individuals and families thereby worsening the level of poverty and disease.

High levels of stress

Stress is defined as a process in which environmental demands strain an organism’s adaptive capacity, resulting in both psychological demands as well as biological changes that could place it at risk for illness (Cohen et al., 2016). Things that cause stress are called stressors. Stress affects everyone, young and old, rich and poor. Life is full of stress. Stress is an everyday fact of life that we all must manage. It comes in all shapes and sizes; even our thoughts can cause us stress and make the human body more susceptible to illness (Salleh, 2008). Chronic stress is linked to other conditions, both psychological and physical. Evidence suggests that a range of chronic conditions and multimorbidity are associated with an increase in perceived stress among people in low- and middle-income countries, and that the poorest persons may be a particularly vulnerable group (Vancampfort et al., 2017).

Unhealthy lifestyle

Literature identifies that chronic illnesses typically appear in middle age after years of living an unhealthy lifestyle. Unhealthy lifestyle characterized by tobacco use, a lack of regular physical activity, and consumption of meals high in saturated fats, carbohydrates, and salt, as exemplified by “fast foods” (Steyn & Damasceno, 2006). This lifestyle raises the risk of hypertension, dyslipidemia, diabetes, and obesity, which act both separately and synergistically. Arguably, risk factors are usually overlooked or under-managed in health-care settings aimed at treating acute diseases. According to Akindele and Useh (2021), many people in Africa live sedentary lifestyles, which predispose them to chronic illnesses.Unhealthy habits are considered modifiable risk factors, which means that people can control or change them through their lifestyle.

4.4.2. Consequences

Consequences are events or situations resulting from chronic illness experience that are evident in the effective concept use (Rodgers, 2000 as cited by Foley, 2017). Consequences were identified based on the following question: what consequences were evident after the chronic illness experience in resource-limited settings? Four consequences of the concept of chronic illness experience in the context of resource-limited settings are: impact on the quality of life, economic stressors, self-management burden and burden to others.

Impact on health-related quality of life

Health-related quality of life includes the patient’s appraisal of their current level of functioning, as well as satisfaction with it, compared to what they believe to be ideal (Megari, 2013). Megari (2013) postulates that an important aspect of health-related quality of life is how an individual experiences the manifestation of an illness or treatment. Chronic illnesses are slow in progression, long in duration, and require prolonged medical treatment. The majority of chronic diseases hold the potential to worsen the overall health of people by limiting their capacity to live well, limiting their functional status, productivity and in turn impacting their health-related quality of life. Megari (2013) revealed some of the factors associated with impaired health-related quality of life for chronically ill individuals namely: coexisting chronic diseases and adverse health risk behaviours such as smoking, alcohol abuse, and physical inactivity. Furthermore, Pengpid and Peltzer (2018) observe that chronically ill individuals living in rural areas, with low education, experience poor quality of life. Therefore, it can be argued that chronically ill people in resource-limited settings experience poor quality of life.

Economic stressors

Mahon et al. (2013) showed that chronic conditions could be expensive for an individual. This depends on the country’s health system and the extent to which individuals or the state pay for health care services. In countries such as Malawi, where there is both public and private provision; most people opt for paying for private care for the following reasons. Firstly, medications are out of stock in public health care facilities; hence, individuals are compelled to go to private care or pharmacies to buy medications. Secondly, when they are dissatisfied with public services they choose private care. Notably, chronically ill individuals are mostly on multiple medications, they experience economic hardship more harshly (Jeon et al., 2009). WHO (2018) underscores that chronic illness increases household costs associated with health-care. The exorbitant costs include lengthy and expensive treatment and the loss of breadwinners (WHO, 2018). This burden pushes many people and their families into poverty and stifles development. Families experience economic stressors associated with managing chronic illness such that they are required to make difficult decisions between care and basic living expenses (Jeon et al., 2009). This will result in jeopardizing the management of chronic illness as a consequence. Hence, an individual’s compromised ability to afford not only essential treatment but also to maintain a healthy lifestyle and quality of life. Wang et al. (2016) estimated both the household direct, indirect, and total costs incurred due to chronic non-communicable diseases (CNCDs) and the economic burden households bear as a result of these costs in Malawi. The study showed that the economic burden of CNCDs is high, causes catastrophic spending, household financial stress, and aggravates poverty in rural Malawi. The poorest households face the highest risk of expenditure due to CNCDs. Wang et al. (2016) points out clear gaps in coverage of the health system of one developing country, such that health care is not affordable for people suffering from CNCDs.

The burden on self-management and others

Chronically ill individuals are responsible for most care on their own. Consequently, this exerts a burden on them. Self- management practices require individuals with chronic conditions to understand their disease and treatment regimen, manage the problems caused by the chronic illness, and make recommended lifestyle modifications (Kristjansdottir et al., 2018). Cudney et al. (2005) add that individuals with chronic illnesses are faced with the day-to-day challenges of managing illness. The daily realities of the chronic illness experience include symptoms control, finding resources, handling crises and rearranging schedules (Cudney et al., 2005; Davis, 2010; Davis & Magilvy, 2000). Additionally, chronic illness exerts a burden on family and friends in supporting chronically ill individuals. Families often contribute greatly to the management of chronic illness (Freitas & Mendes, 2007). Families live with uncertainty and face ethical, individual, social and professional dilemmas. They are also responsible for continuous expenses associated with treatment (Freitas & Mendes, 2007).

Cudney et al. (2005) presented the following statements regarding the consequent events mentioned above.

For the chronic illness experience, one has no control, feels uncertain about the course of the illness and has difficulty managing a positive outlook over the long term. (Cudney et al., 2005)

The implications for the experience of chronic illness in settings with limited resources in rural or remote areas are very significant. Sav et al. (2015) claim that living in a rural or remote environment presents unique challenges for people with chronic conditions, mainly those created by limited health-care services and physical and emotional isolation. Additionally, Zgibor and Songer (2001) revealed challenges facing individuals residing in rural areas to accessing public or reliable transportation; and cost associated with such means of transportation and the increased time that must be taken away from work or families to reach quality care. In addition to that, available evidence suggests that knowledge of both acute and chronic illnesses tends to be poor among those in rural areas (Oloyede, 2013). Furthermore, Davis and Magilvy (2000) argue that compared to their urban counterparts, rural people have poorer health status, higher rates of chronic disease, higher poverty rates, low social-economic status, and limited transportation. It can be resolved that the chronic illness experience in the context of resource-limited settings presents overwhelming consequences for individuals compared to counterparts who reside in urban areas and have resources to manage the chronic illness.

4.5. Related concepts to the concept of interest

Related concepts gather secondary attributes that do not agree with those considered essential to the investigated concept (Rodgers, 2000 as cited by Foley, 2017). Many of these concepts are close to the phenomena they represent or are connected with the specific facts or events to be investigated. The literature review indicated the following concepts associated with chronic illness experience: incapacity for over six months and years of chronic illness. The chronic illness experience lasts long enough to become life itself (Pierret, 2003). Chronic illness is synonymous with “life sentences” where people are punished outside prison centres to live with the illness for life (Wonde & Baru, 2019).

4.6. A model case of the concept

The model case is a fictional story illustrating the concept of chronic illness experience, focusing on a Malawian patient’s real-life struggles to cope with and manage their illness. The experiences are real.

James, a 24-year-old farmer with a 3-year history of type 1 diabetes mellitus, lives in rural Malawi in a traditional mud house with limited access to tarmac road and electricity. He was referred to Kamuzu Central Hospital for a specialty clinic. The tertiary hospital is 53 kilometers away, while the nearest health facility is Nalungu Health Centre, which does not provide diabetes specialty care. He starts off a day before the appointed date of the medical clinic in order to arrive on time and be reviewed the following day. He spends the evening before the clinic day at the guardian shelter of the tertiary (Central) hospital. James’ health passport shows that he is taking insulin (both soluble and lente). He was taught how to self-inject and stated that whenever he has insulin, he follows the daily plan. He had skipped insulin doses for three weeks in the previous three months because he had run out of the medication. He stated that he did not report for clinic review because he did not have the money to travel from his village to the tertiary facility. James needs K6,000 ($8.21) for transportation to a diabetes clinic. He’s knowledgeable about diabetic dietary recommendations. James struggles to follow recommended diets and stores insulin in a clay pot, often reusing syringes due to insufficient supply, causing pain due to bluntness.

5. Discussion

The author’s attest that living with a chronic illness is an ever-changing experience (Kralik & Loon, 2009). Considerable adjustment and adaptation to daily life are required to incorporate the symptoms and consequences of illness. Life with chronic illness can make changes in areas such as employment and income, identity and relationships, parenting, life priorities, and changes to physical, mental, emotional, social and spiritual well being (Kralik & Loon, 2009). Chronic illness requires an individual to adjust to change continually. The experience is also career-related or work-related because one has to live with the illness for life (Grue, 2016). As with chronic illness as a career, one has to figure out what is wrong, what to name it, what to do about it, and, ultimately, how to live with it (Grue, 2016).

More importantly, Kralik (2002) affirms that over time, as people learn ways to live with chronic illness, they accumulate an increasing reservoir of experience that becomes a resource for learning. Learning to live with chronic illness can be hard work as people renegotiate meaning in many aspects of their lives, grieve their losses, and attend to the practicalities of treatments, interventions and appointments (Kralik, 2002). People do attach meaning to the learning they gain from experiences, even if they were adverse and difficult. It enables some people to embrace their struggle and suffering and say they have gained a depth of wisdom and understanding about life and what is valuable (Kralik et al., 2006).

The burden of being chronically ill does not only lie upon and remain within the ill person but his whole family as well; therefore, the entire household ends up becoming affected. This is due to the extensiveness and long duration of chronic conditions, which require continuous caregiving for the patient and out-of-pocket expenses for medication (Javathilaka et al., 2020). On the one hand, ill health adversely affects the productivity of employees which results in lower performance and decrease in the pay and disposable income they receive (Javathilaka et al., 2020). Additionally, companies, as employers will always prefer to recruit employees capable of contributing to their maximum potential in order to reach corporate goals. According to this logic, a chronic condition can arouse the risk of pushing households towards poverty (Sapkota et al., 2021). This analysis demonstrates that chronic illness experience is a challenge in resource-limited settings in developing countries such as Malawi. This inquiry portrays that in such settings, the economic burden of chronic illness experience is high, leading households to face devastating expenditures and pushing households further into poverty. According to WHO (2018) individuals from resource-limited settings are vulnerable and socially disadvantaged. WHO further observes that these people get sick and die sooner than people of higher social positions, especially because they have limited access to health services (WHO, 2018).

This review provides a strong basis for advocacy to introduce an innovative way of improving care given to chronically ill individuals through the introduction of a nurse-led clinic (NLDC).

Some et al. (2016) postulate that nurses can help relieve the significant health care gap in the management of chronic conditions in developing countries. Furthermore, it is indicated that nurses should fulfil a leading role in care for chronically ill individuals, treatment, and education as existing clinical and observational clinical trials have shown that nurses are capable of providing effective quality care at lower costs (Peimani et al., 2010). Nurse-led models of chronic care comprise nurses following the patient’s home and providing services to people with chronic illness while the individual is at home (Clark et al., 2011). Such services include, health assessments, client education and the supply of medications. In addition, the nurse makes appointments with the individuals on the basis of their needs and guidance from clinical protocols. Young et al. (2016) maintain that expanding the nurse’s role in chronic disease management, through nurse-led chronic illness management assists people to better self-manage their chronic diseases. The nurse-led model of chronic care also has beneficial effects on patient satisfaction, clinical outcomes and quality of life.

Self-management has been noted as an attribute of the chronic illness experience. The Chronic Disease Self-Management Program (CDSMP) is a self-management intervention with a strong evidence base. The Chronic Disease Self-Management Program was developed at Stanford University, and its only objective is to help individuals gain a wide range of skills and confidence in managing their chronic illnesses (Lorig et al., 2001). The Chronic Disease Self-Management Program aims to improve self-efficacy through six weekly 2.5-hour sessions that provide vast information about proper chronic disease management and teach relevant skills (e.g., action plan development, communication skills, problem-solving, self-monitoring, nutrition, stress management, medication adherence, and symptom management) (Bahari & Kerari, 2024). The Chronic Disease Self-Management Program has been shown to significantly improve health behaviours, such as increased exercise and improved cognitive symptom management and communication with healthcare professionals (Aantjes et al., 2014; Fracso et al., 2022; Haslbeck et al., 2015; Kennedy et al., 2007). Significant beneficial changes have been observed in health indicators such as self-rated health, disability, fatigue, quality of life, and health distress (Bahari & Kerari, 2024; Haslbeck et al., 2015). We therefore advocate that the evidence-based intervention; CDSMP be implemented in developing nations to support chronically ill people. We also recommend that the chronic illness programme for non-communicable diseases be adequately supported so that medical supplies are always available at the hospital. Furthermore, there is a need for policies that address planning for supplies required by people living with chronic illness to avoid stock out of drugs and essential supplies for efficient self-management.

6. Strengths and limitations

The authors made every attempt to maintain methodological rigour and followed all of Rodgers (2000) steps. However, we observed that little has been published on the experience of chronic illness in resource-limited settings in developing countries. As a result, studies on the experience of chronic illness in resource-limited settings in developing countries are required. The incorporation of data in the form of quantitative papers may have contributed to findings such as the concept’s prevalence or occurrence. This was not, however, the primary goal of this study, which centred on a qualitative description of the concept.

7. Conclusion

This analysis highlights the importance of understanding chronic illness experiences in resource-limited settings in developing countries, highlighting the need for improved primary health care systems that are integrate nurse-led care models. This knowledge can guide nurses in providing competent care to chronically ill individuals. Mahon et al. (2013) emphasized the importance of healthcare workers’ understanding of chronic illness experiences in meeting the needs of individuals with such illnesses.

Authors’ contributions

This work was written by all of the authors equally.

Acknowledgments

We would like to thank the authors of the articles included in this review, as well as the researchers involved in this essential field of study. The authors would like to express gratitude to the Assistant Librarian of Kamuzu University of Health Sciences in Lilongwe, Malawi, who assisted with the literature search.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary Material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17482631.2024.2378912

Additional information

Notes on contributors

Ellen Samwiri Nkambule

Ellen Samwiri Nkambule is a qualified nurse-midwife, educator, and researcher. She holds a Master of Science in Adult Health Nursing. Ellen is currently a lecturer in the Department of Nursing and Midwifery at Mzuzu University in Malawi. Ellen is establishing herself as an independent investigator and skilled qualitative researcher. Ellen has published papers and made presentations at conferences (both locally and globally). Ellen’s research interests are chronic illness, diabetes, and HIV/AIDS.

Gladys Msiska

Gladys Msiska is a senior lecturer at the Kamuzu University of Health Sciences, in the School of Nursing, Malawi. She holds a PhD in Nursing. She is a seasoned researcher and has a passion for the provision of compassionate nursing care, ethical practice, patient safety and student learning, and her research interests centre on these issues. She is one of the editors of a Research Handbook on Patient Safety and the Law.