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Life constraints and self- management strategies of older people living with chronic illness. A qualitative study

Michael Rovithis¹, Sofia Koukouli², Alexios Dimitropoulos³, Argyroula Kalaitzaki², Nikolaos Riko⁴, Georgios Vasilopoulos⁵, Aikaterini Papachristou⁶, George Tsolas⁶, Alexandra Tamiolaki², Eleni Tsapnidou⁵, Anastasia Dimitrantzou, Dimitrios Katsiris⁷, Elli Katsiri⁷ and Areti Stavropoulou^{5,8 1}Department of Business Administration and Tourism, School of Management and Economics Sciences, Hellenic Mediterranean University, Gianni Kornarou, Es, Greece
²Department of Social Work, Faculty of Health Sciences, Hellenic Mediterranean University, Gianni Kornarou, Estavromenos 1, 714 10 Heraklion, Greece
³TECHAPPS HEALTHIER IK?, 56 Ippokratous str. 10680 Athens, Greece
⁴Department of Nursing, Faculty of Health Sciences, Hellenic Mediterranean University, Gianni Kornarou, Estavromenos 1, 714 10 Heraklion, Greece
⁵Department of Nursing, Faculty of Health and Care Sciences, University of West Attica, Ag. Spyridonos Str., 122 43 Athens, Greece
⁶Institute of Nursing Research and Health Policy, 73 Aristotelous str. 10434 Athens, Greece
⁷Innosense, 18 Esperidon str. Aharnes 136 74 str. Athens, Greece
⁸Faculty of Health, Science, Social Care and Education, Kingston University, London, UK

Received: 02-Jul-2023, Manuscript No. iphsj-23-13953; Editor assigned: 04-Jul-2023, Pre QC No. iphsj-23-13953 (PQ); Reviewed: 18-Jul-2023, QC No. iphsj-23-13953; Revised: 24-Jul-2023, Manuscript No. iphsj-23-13953(R); Published: 31-Jul-2023, DOI: 10.36648/1791- 809X.17.7.1036

Keywords

Chronic illness; Diabetes mellitus; Chronic obstructive pulmonary disease; Heart failure; Self-Management; Life constraints; Older people; Empowerment; Quality care; Qualitative study

Introduction

In the 21st century, non-communicable diseases (NCDs) cause approximately 41 million deaths each year, equivalent to around 71% of all deaths globally [1]. According to the World Health Organization, although longevity increased globally by ≥6 years in 2019 on average, compared with 2000, only 5 of those additional years were lived in good health; people are living longer but with more disability [2]. Cardiovascular diseases, cancers, respiratory diseases, and diabetes account for over 80% of all premature NCD deaths in ages between 30 and 69 years [3]. The increasing burden of NCDs, such as chronic obstructive pulmonary disease (COPD), heart failure (HF) and diabetes mellitus type 2 (DM 2) has made their prevention and management a global priority. However, managing the needs of these long-term health conditions adds a substantial load to an already overstretched healthcare system that is struggling to cope with the demands of acute care, exacerbated by the COVID-19 pandemic [4].

In addition, chronic diseases may pose a variety of challenges in humans’ lives by causing functional disabilities, life style changes and social and family restrains [5]. For example, COPD individuals experience severe fatigue and higher rates of anxiety and depression while early-morning and night-time COPD symptoms result in deterioration of quality of life [6-9]. This chronic condition has significant adverse effects on peoples’ physical status, as it is a common use of pneumonia, pulmonary hypertension, and cardiovascular disease. To a further extend, the persons’ psychosocial well-being, the family relationships and the social lives are severely challenged [10].

Similarly, people living with other chronic conditions such as HF and DM2 appear to experience great physical and social problems, impairment, susceptibility to infection and impotence [11, 12]. Reed et al., [13] referred to the complexity of the care and treatment, the number of health resources required and the high morbidity rates for individuals with chronic conditions such as HF.

Self-management has been reported as a key factor for people with chronic conditions [10, 14, 15]. Self-management requires a dynamic, interactive, and daily process in which the individuals are engaged to better cope with chronic disease [16]. This process has several advantages for the people who are living with a chronic illness, as it leads to appropriate life style changes, improved capacity of managing the symptoms of the disease, reduced physical and psychosocial effects caused by the disease and better treatment [17]. Self- management behaviors may also help individuals to slow down the progression of the disease and prevent hospitalizations, particularly during the stable period [18].

The limitations experienced by the individuals with chronic illness and the benefits of self-management approach have been demonstrated in the relevant literature to a certain extent [6, 11, 12, 14, 17, 18]. However, the contemporary profile of the healthcare services is radically changing globally and the demands of the services’ users are constantly diversifying. Ιt is thus, considered necessary to further expand our knowledge on views, perceptions and self-management strategies of older individuals living with chronic diseases, a population with increased health care needs which requires the provision of meaningful and high quality of care.

Αim

The aim of the present study was to explore the views and perceptions of older people who experience a chronic condition, concerning daily life constraints and self-management strategies.

Materials and Methods

Design

A qualitative research design based on inductive content analysis approach was applied. Qualitative research methods are recommended for investigating human perceptions, feelings and experiences [19]. These methods are frequently used for exploring complex phenomena which are rather underexplored and praised for providing wealth of data and in depth understanding of the subjects under investigation [20]. To a further extent, inductive content analysis is a systematic and objective method that can be used by the qualitative researcher to gain a thorough understanding of the data and to methodically reduce a big volume of textual data into a clear, short summary of key findings [20]. Utilisation of inductive content analysis is recommended when prior knowledge of the subject under investigation is limited or incomplete [21]. As such, this method was considered to be the most suitable for the current study.

Context and participants

Individuals living with chronic conditions consisted the study population. In particular, the chronic diseases which were selected to be included in this specific study were those that according to the relevant literature cause major functional disabilities and require significant changes and adaptation in daily living. In this respect and considering the high prevalence rate and the severity of the chronic conditions, individuals with DM2, COPD and HF constituted the study population [1]. A purposive sampling strategy was used to recruit potential participants. The outpatient’s department of a tertiary general hospital (S1) and two rural health care centres (S2 and S3), within the region of Crete Island were the involved study sites. Individual’s ≥ 60 years old, living with DM2, COPD and HF for at least two years, were invited to participate in the study. This time frame was deemed crucial for the research participants to thoroughly discuss their experiences and perceptions on self-management strategies regarding their illness. Further to this, potential participants required to be in a good mental status so that they can express their views accurately and in a stable physical condition and not to be hospitalized. Recruitment of study participants took place by two members of the research team who advertised the study via social media and within the involved Organizations’ sites. Twenty-one individuals agreed to participate in the study. Demographic data of the participants are listed in Table 1.

Data Collection

Semi-structured interviews were conducted for data collection purposes. When in-depth information on a person's experience is needed, this type of interview is recommended as, it enables the study participants to spontaneously and thoroughly respond to complex questions and to provide thus a plethora of information [22]. Interviews were carried face to face in a location selected by the participants. A researcher who was well educated in interviewing procedures, conducted all the interviews.

Throughout the interviewing process the participants were encouraged to provide the richest and complete information possible, while closed-ended or leading questions were avoided. The interview guide included one open-ended question that invited the participants to describe: how it is living with DM2/ COPD/HF?

Additional open-ended questions were used whenever necessary focusing on the following issues:

1. Problems caused by the disease in daily life.

2. Ways of managing the disease.

3. Suggestions for better disease management.

4. Overall perceived assessment of the participant's quality of life.

Each interview lasted from 15 to 25 minutes. In total, 21 interviews were conducted. The "information power," technique which determines the sample size based on the sample specificity, the volume of data collected and the quality of the dialogue was followed to establish data saturation [23]. After completing each interview, data was converted into a textual format so that the analysis phase can be applied. For the purpose of accurately conveying the meaning of the text in the English language, a backward-translation technique was adopted [24].

Data analysis

Following the model of Elo and Kyngas [25], three stages of the inductive content analysis approach - preparation, organization, and reporting - were used in the current study. According to this model, words and sentences of the interviews' text were comprised the units of analysis. The context of the interviews was thoroughly examined, to obtain in depth understanding of the collected data. Further to this, main categories and subcategories were emerged through open coding and abstraction of data. Findings were reported in the form of participants’ quotations. In this way research evidence was presented and substantiated with the most indicative text extracts.

Ethics

Τhis study was a part of a broader research Project entitled “Empowered: Complete, smart personal autonomous living assistant for the elderly”. This Project was approved and co - funded by the «RESEARCH - CREATE - INNOVATE» Operational Programme Competitiveness, Entrepreneurship and Innovation 2014- 2020 (EPAnEK) (Ref. No 5070922/29-9-2020 and Ref. No approval from Hellenic Mediterranean University 74/θ.21/18.11/2020). For the present part of the research an informed consent form was signed before conducting each interview. Relevant information on participant anonymity and confidentiality was provided. The voluntary nature of the study and a participant’s right to withdraw from the study at any time without any consequences were discussed. Before each interview, permission was granted by the participants for tape recording. Personal data were protected throughout the study, and code numbers were given to participants for preserving anonymity. Interview extracts were used in order to illustrate the presentation of the findings, without including any identifying information.

Credibility of research

Analyst triangulation was one of the strategies used to ensure the trustworthiness of the study. A second analyst was engaged to review the findings of the study and to identify possible inconsistencies in terms of coding and category formulation. Furthermore, the involvement of the two analysts provided the opportunity to explore in detail potentially different views and concepts, to resolve divergences and improve thus the reliability of the findings. Reflexivity and reflexive notes were used by the researcher throughout the research process for exploring and acknowledging personal assumptions, biases and values, and identify how subjective responses and relationships with the study participants may influence the decision making throughout the research. COREQ guidelines were used to report our qualitative findings [26].

Results

Twenty-one (21) individuals with chronic health conditions such DM2 (No of participants: 7), COPD (No of participants: 6) and HF (No of participants: 8), participated in the present study. Participants’ age ranged from 60 to 85 years. The vast majority of the participants were married, while half of them had relatively low level of education (below high school) and a poor or moderate financial status. On the scale of perceived knowledge regarding the disease, most scored above average, with six patients scoring excellent or almost excellent (grades 9 and 10) regardless of education level (Table 1).

Table 1. Demographic characteristics of participants with Diabetes mellitus type 2 (DM 2), Chronic obstructive pulmonary disease (COPD) and Heart failure (HF).

The content analysis led to the formulation of two main categories, namely “Limitations of Daily Life” and “Disease Management”. Five subcategories were formed and assigned respectively to each main category (Table 2).

Table 2. Main categories and subcategories.

Limitations of daily life

Individuals living with chronic health conditions reported a variety of problems caused by their disease and affecting their daily lives. Analysis of the data revealed two subcategories which were assimilated to the first main category namely: a) Physical restrictions and b) Negative feelings.

1a. Physical restrictions

In the first subcategory called “Physical Restrictions”, the participants referred to the physical constraints that the chronic disease caused in their daily life. In particular, DM2 individuals reported restrictions on diet, mobility, family and work obligations (R6). Variations in their physical condition and abnormal blood sugar levels appear to greatly limit daily tasks and the ability of the individuals to cope with household activities (R7). Discomfort was caused by the lack of knowledge regarding the proper management of the disease symptoms at a daily basis (R2). The COPD participants referred to issues such as shortness of breath, continuous need of oxygen, restricted mobility and fatigue (R8, R9), while respondents with HF reported that symptoms of the disease and constant fatigue due to the abnormal heart rate severely constrain their lives (R16). In addition to that, comorbidities seem to worsen the individuals’ health status and limit their autonomy (R21).

1b. Negative feelings

Regarding the subcategory “Negative Feelings”, the participants referred to fear, anxiety and stress as the dominant feelings experienced throughout the course of their disease. These feelings are related to the symptoms caused by their health condition, the course of the chronic disease and its complications (R3). Τhe lack of knowledge and skills regarding the management of the disease, the limitation of autonomy and the dependence on others seem to maximize the tension and the negative feelings experienced by the respondents (R2). Uncertainty, psychological burden and grief are caused by the bad physical condition and the severity of the illness (R20). The inability to sufficiently cope with professional responsibilities appears to cause additional stress for the people who live with a chronic illness (R14) and deteriorate even more their physical condition. Participants seem to experience a continuous struggle and tension not only to cope with the activities of daily living, but to keep on living (R13).

Disease management

The management of chronic diseases appeared to be a challenge for our participants. Issues involving daily scheduling, self-care, compliance and support were reported. The data analysis led to the formulation of three subcategories fitting under the main category, a) Planning and self-care, b) Supportive environment, and c) Use of technology.

2a. Daily planning and self-care

In the first sub-category called “Planning and self-care” the participants appeared to manage their disease by following a precise daily schedule regarding nutrition, exercise and medication. The concept of self-care was dominant in the participants’ reports (R3, R4). Compliance with medication and following the health providers’ instructions were mentioned by several participants as key-issues for managing their disease in the most appropriate way (R12, R14). By following these actions, the participants appeared to be able to satisfactorily manage their illness and control the symptoms arising from it (R15).

Although proper nutrition, compliance with the treatment and communication with the doctor were praised in most cases, the need of more organized support and assistance for effectively managing the disease was also mentioned (R15, R18, R19).

2b. Supportive environment

In the second subcategory called "Supportive environment" the participants referred to the importance of the supportive environment in the effective management of their disease. Family and health professionals seemed to be key-persons in supporting the individuals with chronic conditions. (R1, R10, R11).

Most of the participants seem to be satisfied with the way they manage their disease, while they appear to turn to their doctors for further advice and follow-up (R14). The need for extra support and provision of more specific information about disease management were highlighted by participants with deteriorating health and limited knowledge in managing their disease (R19, R20).

2c. Use of technology

The participants referred to the use of technology as a means of disease management. Using simple devices, such as a blood pressure monitoring device or the pulse oximeter, for managing their disease and control their diet was mentioned in some cases (R7, R14, R8). Most of the study participants appeared though to be unfamiliar with the use of technology mainly due to a lack of appropriate infrastructure, knowledge and skills. In addition to that, participants of an older age and of a lower educational level do not use technology in managing their disease (R2, R16, R11). It appears though, that many participants use the internet to acquire information about issues related to their illness (R5) and that technology can play a supportive and facilitating role in disease management even at older ages, provided users are properly trained and familiar with the equivalent devices (R20). Indicative quotations from the participants’ interviews are cited in (Table 3).

Table 3. Indicative quotations from the participants’ interviews.

Discussion

The findings of the present study revealed that people living with chronic illness face serious constraints as they experience a variety of problems caused by their disease and severely affect their daily lives. More specifically, physical restrictions were associated to individuals’ dietary habits, mobility, and shortness of breath, dyspnea, and permanent use of oxygen devise, abnormal heart rate and fatigue. In addition, the participants referred to the negative feelings experienced due to their chronic illness such as stress, anxiety and fear. The inability to effectively manage their disease and to cope with family and professional obligations were also mentioned.

Research evidence at an international level, agrees with the results of the present study, emphasizing on the impact in individuals’ daily lives and how this leads to poor quality of life [27]. Sevilla- Cazes et al., [28], stated that people with HF experience negative emotions of hopelessness, frustration and restricted functional status, leading to despair and impairment. Furthermore, HF individuals referred to social and family destruction, fear of dying, sadness and depression [29], while others said that living with a chronic disease such as COPD meant coping with fear, lack of knowledge about the disease and loss of freedom at multiple levels [10]. Similarly, the involvement of healthcare professionals in self-management education was praised as reducing individuals’ anxiety and supporting successful adaptation to the disease [30]. Understanding the disease, managing symptoms and medication, independence, upholding family and social life and living positively are referred to as support needs and coping strategies to effectively manage the chronic illness [31, 32].

In our study, management of the chronic disease was closely related to daily planning and self-care, supportive environment and use of technology. More specifically, following a precise daily schedule including diet, exercise, medication and doctors’ instructions was mentioned as an assisting mechanism for disease management. Even more, family and health professionals were referred as the key persons in supporting the individuals with chronic conditions.

Similar results are reported in the relevant literature, stating that family’s and health professionals’ support is crucial for the persons’ adaptations in life changes due to the disease. Understanding how people perceive the disease and how they manage their health condition is a key action for health professionals, in order to develop personalized health care plans and relevant training programs [10, 31, 33-35]. Bernhard et al. [36], report that self-management strategies for individuals with chronic conditions should involve community health care services, social and online resources, and enhanced personal responsibility. The need of educating people concerning early recognition of disease symptoms and complication is also stated. Furthermore, developing a self-management support system with the patient-physician collaboration may enhance the individuals’ ability to cope with their health problems at a daily basis [37, 38]. Emotional support and encouragement, empowerment and independence, an organized daily life and support of family and health professionals at a community level, are considered important dimensions for self-care and for improving the quality of life of people with chronic diseases [39, 40, 41].

Finally, in the present study, the use of technology in disease management seemed to be deteriorated due to the lack of familiarity, knowledge and skills and the old age of the participants. These inhibiting factors were also observed in various other studies, reflecting that the limited knowledge and skills along with aging deteriorate the use of technology in managing the chronic disease and restrict thus self-management strategies for persons with chronic diseases [28, 30, 31, 42]. Despite that, relevant research evidence demonstrates that specific groups of individuals (DM and HF) seem to be more familiar with the use of information technologies, such as mobile phones’ applications to support self-management and empowered strategies. Those people held positive attitudes towards using IT for managing their disease and appeared to have high levels of self-efficiency. Relevant studies reveal that technology acts as a safety net for detecting errors, collecting information and managing the disease in an optimal manner [42, 43- 49]. Even more, the use of technology by individuals with chronic conditions may assist in changing behavioral patterns, self-regulation of emotions such as anxiety and uncertainty, rehabilitation process, communication with health professionals and promotion of self-awareness [50- 53].

Buildings self-care capacities for individuals with chronic diseases are related to improved outcomes and better quality of life [54]. Patient education, information and knowledge are capacities that may alter the persons' behavior, increase psychological resilience and enhance adherence with treatment process [55]. To a further extent, provision of digital literacy through education, training and community-based support may increase individuals' self-efficacy in managing their disease in a more autonomous and efficient manner [56].

Strengths and limitations of the study

This is the first qualitative study carried out in Greece, aiming at exploring in depth the views and perceptions of older people who experience chronic conditions (DM2, COPD and HF), with regard to daily life constraints and self-management strategies. In this respect, the knowledge provided by this study is unique and it may consist the source for further research in this specific field. However, time and administrative constraints which imposed by the regulations of the Operational Programme (project code: T2EDK-00586), within the frame of which this study was conducted, generated certain limitations. The study concerned 21 individuals living with three chronic diseases (COPD, DM2, and HF), which they have different characteristic and symptoms and diverse strategies of self-management. Further study focusing on these particular issues and using larger sample sizes is recommended. To a further extent, in the present study, participation of individuals who live mainly in rural provinces and for whom the time since the first diagnosis was varied may affect the interpretation of data. Further research with a similar population living in urban and extensive geographical areas is suggested as this may enrich our knowledge on the subject under investigation.

Conclusions

Individuals living with chronic conditions consist a vulnerable population group requiring specialized treatment and care. Quality care and empowerment interventions for this population are extremely important for improving their health status and maintain quality of life. Adopting self-management strategies may reduce the limitations of daily life that these people experience and provide an opportunity to obtain a more autonomous life style. Support from health professionals and utilization of information technology appear to have a positive effect on the empowerment and independent living of people with chronic conditions. However, relevant interventions, for being effective, should be adapted to the needs of the individuals and the context in which they live. Tailor-made training, targeted information and organized support from the health care team at a primary level are considered essential factors for empowering these population groups. Further research is recommended aiming at monitoring and investigating the needs of these people in relation to the use of information technology and developing fitting strategies for self-management and independent living.

Acknowledgements

Sincere gratitude should be expressed to all participants in this research study.

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