Article Text
Abstract
Introduction Self-management, as the most common method of chronic obstructive pulmonary disease (COPD) management, is not an isolated behaviour, but a set of physical, social, cultural, psychological and existential factors affecting it.
Aim This study aimed to explore the facilitators and barriers to self-management in men with COPD in the unique social, cultural, political and economic context of Iran.
Methods This paper reports part of the findings of a qualitative grounded theory study aimed at exploring the process of self-management in Iranian men with COPD, which was conducted in Iran from January 2019 to July 2023. Participants included men with COPD, their family members and pulmonologists. The selection of participants in this research began with the purposeful sampling method. Data was collected using semistructured interviews. Data collection continued until the data saturation was achieved. A total of 15 interviews were conducted with nine patients, three family members of patients and three pulmonologists. The data was analysed using the constant comparative analysis method.
Results The findings of this study showed that knowledge, education, experience, family involvement and financial support are the factors that facilitate self-management. Factors related to deficits include lack of education, lack of treatment support, family cooperation deficit, financial problems, medication obtaining problems and factors related to disease impacts include specific nature of the disease, residual effect, comorbidity and factors related to negative patients characteristics include false beliefs, poor self-efficacy, feeling shame and non-adherence are barriers to self-management in men with COPD.
Conclusion Based on results of this study, healthcare providers and health planners can strengthen the factors that facilitate self-management and weaken or remove the barriers to self-management, so that these patients use self-management strategies with maximum capacity to control the disease.
- Pulmonary Disease, Chronic Obstructive
Data availability statement
Data are available upon reasonable request. The datasets used and analysed during the current study are available from the corresponding author upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Self-management is not an isolated behaviour and a range of physical, social, cultural, psychological and existential factors influence the self-management in patients with chronic obstructive pulmonary disease (COPD).
WHAT THIS STUDY ADDS
This study showed that knowledge, education, experience, family involvement and financial support are factors that facilitate self-management in Iranian men with COPD.
This study showed that factors related to deficits include lack of education, lack of treatment support, lack of family cooperation, financial problems, medication obtaining problems and factors related to disease impacts include specific nature of the disease, residual effects, comorbidity and factors related to negative patients characteristics include false beliefs, poor self-efficacy, feeling shame and non-adherence are barriers to self-management in Iranian men with COPD.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Healthcare providers and health planners can use the results of this study to strengthen the factors that facilitate self-management in these patients and weaken or remove the barriers to self-management as much as possible and through this, improve the health outcomes of these patients.
Introduction
Chronic obstructive pulmonary disease (COPD) is one of the most common chronic diseases and one of the main leading cause of death worldwide accounting for 3.23 million deaths in 2019.1 The global prevalence of COPD is 15.70% in men and 9.93% in women.2 In Iran, according to the WHO’s 2014 report, 395 thousand people die every year, 76% of these are due to chronic diseases and 4% are related to chronic lung diseases.3 The prevalence of this disease in Iran is 11.9% in men, 8.8% in women and 10% in general.4 However, this disease is not curable and should only be managed.5
The most common method of COPD management is self-management.6 7 Self-management refers to the ability of individuals, together with family, community and healthcare personnel, to manage the symptoms and therapeutic, physical, psychosocial, cultural and spiritual consequences of the disease and lifestyle changes to live with a long-term chronic disease.8 Self-management for people with chronic diseases is now widely recognised as an essential part of treatment and has gained increased attention in clinical practice as well as in policy and research.9–11 The patients with chronic diseases spend most of their time outside the healthcare system, therefore, they must learn how to manage their chronic disease and take responsibility for their own care.12
Self-management is not an isolated phenomenon and a range of physical, social, cultural, psychological and existential factors influence the self-management in patients with COPD. Understanding these factors is important in designing interventions and supporting individuals to self-care13 and effective and sustainable self-management is achieved only when contextual factors are taken into consideration,14 but these factors reported differently in different contexts.15–17
However, no study has been conducted on the factors affecting self-management in the unique social, cultural, political and economic context of the Iran, so far. Therefore, this study was conducted with the aim of understanding the facilitators and barriers to self-management in Iranian men with COPD.
Methods
Study design
This paper reports part of the findings of a qualitative grounded theory study aimed to explore the process of self-management in Iranian men with COPD. The manuscript was written in accordance with the consolidated criteria for reporting qualitative research, which includes a 32-item checklist for interviews and focus groups (online supplemental materials).18
Supplemental material
Setting
This study was conducted in the internal or pulmonary wards of selected hospitals affiliated to Iran University of Medical Sciences and Shahrekord University of Medical Sciences.
Participants
The participants of this study were patients with COPD, family members of patients and pulmonologists. The inclusion criteria of the patients were male gender, at least 1 year history of COPD, second or higher stage of the disease, speaking Persian, willingness to provide information, ability to participate in the interview and not having a life-threatening disease. The inclusion criteria for the patients’ family members included being the patient’s main caregiver for at least 1 year, the ability to express their experience and willingness to participate in the study. The inclusion criteria for pulmonologists were at least 5 years of experience in the field of treating pulmonary diseases, ability to express experiences and willingness to participate in the study. Exclusion criteria for patients included exacerbation of the disease condition during the interview and unwillingness to continue participating in the study. Reluctance to continue participating in the study was the exclusion criteria for patients’ family members and pulmonologists.
Recruitment method
The selection of participants for this study began with purposeful sampling method. The first interview was conducted with a male patient with COPD who has suffered from the disease for 20 years and had a long-term experience, knowledge, interest and ability to share information. As the study progressed, the sampling was continued theoretically to achieve data and conceptual saturation. Therefore, subsequent participants were selected based on questions that came to the researcher’s mind through analysis of the data and recorded memos, and conditions that appeared to lead to self-management behaviours in men with COPD. Interviews with family members and pulmonologists were also conducted in this direction and based on concepts and categories extracted from interviews with participants.
Also, maximum variation sampling was achieved through diversity in the patients’ education, occupation, socioeconomic level, disease stage, duration of disease, smoking status and comorbidities
Data generation
Semistructured face to face individual interviews were conducted to collect data. Interview sessions lasted 48–107 min, with an average of 71 min, depending on participants’ tolerance and interest in describing their experiences. All non-verbal behaviours, facial expressions and eye contact were noticed during the interview. The interviews began by asking a very broad, general and open-ended question. The interviews guided by an interview guide that was developed based on the literature review and discussion with the supervisors (table 1). Depending on the participants’ responses, probing questions were asked. The interviews were audio-recorded. Data collection continued until data saturation was achieved. Also, field notes made during and after the interviews. A multidisciplinary research team, consisting of experts in COPD care and qualitative research methods, was responsible for conducting the study. The interviews were conducted by Farshad Heidari-Beni, who was a PhD candidate in nursing at the time of the study. He had received the necessary educations in qualitative research and conducting interviews. At the beginning of each interview session, the researcher first introduced himself and explained the reasons for his interest in the research topic and explained the reasons and objectives of this study. All participants were informed of the purpose and design of the study and the voluntary nature of their participation. Informed consent was obtained from the participants in writing and signed by them. In addition, participants were allowed to withdraw from the study at any time they wanted.
Data analysis
The constant comparison method was used to analyse the data.19 After each interview, the researcher transcribed it verbatim and familiarised himself with the data by reading it several times and analysed it concurrently with the data collection. Then, the open, axial and selective coding were used to analyse the data. In open coding, the interview texts were read line by line, and open coding was extracted. Codes with a common concept were placed together under one category, so that several categories were formed. In the axial coding stage, the extracted categories and their dimensions were compared and integrated, to obtain the final classification. In the selective coding stage, a core category and a detailed model of self-management in patients with COPD were developed. The details and components of the model of self-management in patients with COPD are reported in another paper, which is not published yet and only the facilitators and barriers to self-management in these patients are reported in this paper. The Microsoft Word software was used to manage the data.
Trustworthiness
The four criteria of Lincoln and Guba for ensuring the trustworthiness of qualitative research including credibility, dependability, confirmability and transferability have been met.20 To ensure credibility, the prolonged engagement with the research subject was performed. Also, member checking technique was used and the emerging categories were confirmed by some of the participants.
To confirm the dependability, an inquiry audit was used in which a researcher not involved in the research process examined both the process and product of the research study and confirmed that the findings, interpretations and conclusions are supported by the data. The researcher maintained a reflexive journal during the research process to ensure confirmability and the researchers attempted to provide a rich description of the data to enhance the transferability of the findings.
Results
A total of 15 interviews consists of nine interviews with patients, three interviews with family members of patients and three interviews with pulmonologists were conducted. Participants’ characteristics are depicted in table 2.
Fourteen subcategories for self-management facilitators were extracted from interviews with participants, which were grouped into 5 categories, and 12 subcategories for self-management barriers extracted from interviews with participants, which were grouped into three categories. The facilitators’ and barriers’ categories and subcategories are depicted in table 3.
Facilitators
In their interviews, participants mentioned many factors that facilitate self-management in men with COPD. These facilitators included the subcategories of knowledge, education, experience, family involvement and financial support.
Knowledge
The more knowledge men with COPD have about the different aspects of controlling their disease, the better they can manage it. However, due to the old age and low education of these patients, they usually do not have enough knowledge to manage the disease.
Participant number 3 stated:
I already know how to control the disease so that it does not get worse, I should not go out in air pollution, not go out in cold weather, not catch a cold, not go near people with colds, wear warm clothes and stay at home in winter.
Education
Receiving education on various aspects of disease management was another factor that facilitated the self-management in men with COPD. Most of these educations were given by the healthcare providers and sometimes by the family or people close to the patient, and in some cases, patients searched for specific information on the internet. These patients were educated about exercise and activity, avoiding disease exacerbating factors, medications, COVID-19 and breathing techniques. Participant number 13 explained:
Education on sputum drainage and discharge is necessary in these patients and they are educated on the methods to drain their sputum. We teach their caregivers to tap on the back of the patient to help drain the mucus. Even at an advanced stages, we teach patients some breathing techniques, for example, we teach them the huff breathing technique or pursue lip breathing technique.
Experience
The interviews with the participants showed that men with COPD who had more experience had a higher level of knowledge and were better able to manage their disease. Experience with previous exacerbations of the disease may lead men with COPD recognise the exacerbating factors of the disease and subsequently take action to prevent them. Experience in these people included ‘medication experience’ and ‘exacerbation experience’. Participant number 6 stated:
At the beginning of my illness, I had no experience and did not know what to do to prevent dyspnea, I had little information and was not well educated, but over time, I learned through trial and error what to do, what to eat and how to use oxygen.
Family involvement
Family members can help the patient in managing the disease to varying degrees. The more family members are involved in the management of the disease, the better the disease will be managed. Family involvement included family active assistance and family monitoring. In family monitoring, the patient’s family members are familiar with the symptoms of an exacerbation of the disease, so that they can take the necessary actions as soon as the symptoms appear. They also monitor all of the patient’s activities to manage the disease and prevent them from engaging in activities that provoke the disease. In addition to the role of monitoring, family members play an important and active role in assist to the patient during the illness. This assistance is particularly evident during an exacerbation of the disease. Participant number 11 stated:
Both I and the children are very careful about him. We do not leave him alone. We are very attentive to him and we make sure that he does not inhale the smell of cigarettes, the smell of frying, etc., we are careful not let him go out when the weather is cold, we are careful that he does not feel bad, and if he has severe shortness of breath and cough, immediately we give his medicine.
Financial support
In the interviews with the participants, the role of financial support in the disease management of men with COPD was repeatedly mentioned. People who have good financial support are able to buy good-quality medications, be treated by good doctors and in private offices, buy expensive respiratory equipment and supplies necessary for disease management, pay for living costs despite disability and generally, manage the disease better. Financial support included financial support received from family members, the patient’s financial status and government and social organisations’ financial support. Participant number 10 stated:
The oil company, where he used to work, has a lung specialist doctor. I go there every month and he prescribes our monthly quota of medication, which I then buy free of charge from the company’ s pharmacy. The oil company is very supportive. All the services are free for us, we pay nothing and can buy everything we need to manage the disease. The company also covers the cost of the hospital and hospitalization
Barriers
In their interviews, the participants mentioned many factors that cause problems and barriers to self-management in men with COPD. These barriers included the categories of deficits, disease impacts and negative patients characteristics.
Deficits
Defects in some factors make self-management difficult in men with COPD. These deficits included lack of education, lack of treatment support, lack of family cooperation, patient’s financial problems and medication obtaining problems.
As education is one of the factors that facilitate the self-management in men with COPD, the lack of education in patients causes many problems in self-managing of the disease. Participant number 15 explained:
Pharmacies do not have time to educate patients on how to use medications. For example, I had a patient who came to me after a month and said the medication you prescribed did not work for me and was not effective. When I asked him how you use these medications, I see that he is using them incorrectly and has not used his spray once in that month in fact. This is a problem now because these patients have very little ability to learn and are old and are not educated, and the new sprays are used differently than the old ones, and this is a big problem.
Men with COPD have to pay a lot for hospitalisation, medications, oxygen and other equipment needed to manage the disease, but they often complained about the lack of insurance support and the government support for medications and equipment needed to manage COPD. Participant number 5 stated:
My insurance is general health insurance, but the insurance does not pay to buy equipment like oxygen generators and we do not have enough money to buy them.
People close to the patient, especially the family of these people, play a very important role in the management of the disease. However, families or some family members are not able to help manage the disease, which is considered one of the barriers to self-management in this study. Participant number 11 stated:
My daughters don’ t care about their father. They use perfume before they go to work and that sometimes makes his situation worse. I tell them not to use it, but they say we should go to work smelling good. I tell them, to at least go outside and use it so the smell does not get to their dad.
Another important barrier to self-management in men with COPD was financial problems. As the men in Iranian families are responsible for the family income, most of them are no longer able to work and earn money due to this disease. Also, the economic hardship in Iran, the high cost of treatment and the lack of insurance support for most of the medications and equipment needed to manage this disease, meant that most of the participants had financial concerns in addition to the disease and mentioned this frequently. Participant number 12 stated:
We have a lot of trouble buying the medications and paying the hospital bills. Financial problems made it impossible for us to take good care of him. The dyspnea started a few years ago, and when he went to see a respiratory doctor, he gave us a prescription but when we went to buy the medications, we saw that it was very expensive and we had to stop the treatment.
Taking medication is the most important part of COPD management. However, due to the sanctions and economic problems in Iran, it is very difficult for men with COPD to obtain the original medications for disease management. Due to the rise in the dollar exchange rate, the price of most of these drugs has increased more than 10-fold and they are not covered by insurance. Moreover, obtaining these medications is very difficult and they are not found in all pharmacies, which makes obtaining medications to be one of the barriers and concerns of disease management in these patients. Participant number 7 stated:
It is not easy to buy sprays. They do not give us medicine without a doctor’ s prescription, and we have to go to the doctor to get a prescription. Not all pharmacies have these drugs, and we have to see where they can be found. It used to be 50 thousand, now we buy 600, 700 thousand tomans a piece.
Disease impacts
During the interviews, the participants repeatedly pointed out barriers of self-management in men with COPD, which were related to the disease and the impacts of the disease. The disease impacts included the specific nature of the disease, residual effects, and comorbidity.
Men suffering from COPD reported of problems that were related to specific nature of the disease and hindered self-management in these patients. Specific nature of the disease including the unpredictability nature of disease, incurable nature of disease, no response to the medications at some times, etc. Participant number 1 stated:
This disease is unpredictable. The dyspnea comes on suddenly and it does not matter where I am, it comes on suddenly and I have to urgently look for medication and sprays to control it. If I do not have access to medication, it becomes very severe and can get out of control.
Those who were exposed to environmental pollution and respiratory irritants prior to the disease believed that exposure to these factors leads to the lung destruction, and the management of the disease is more difficult in these people. Participant number 5 stated:
I used to smoke a lot. I used to work in a bakery and there was a lot of heat there, which was worse than smoking. Because my lungs were in contact with these irritating substances for many years, my disease is much more severe and my dyspnea is more severe than others, and it is much more difficult for me to manage the disease.
The characteristics of COPD, and old age, mean that men with COPD often suffer from comorbidities. Moreover, these comorbidities and complications themselves require monitoring, care and treatment, which leads to the patients’ attention and focus being diverted from the main disease, which participants also mentioned as one of the barriers to disease management. Participant number 8 stated:
I have many other illness, for example, heart disease, for which I have to take regular medicine, control my blood pressure, and eat special foods to keep my blood pressure from rising. I also have osteoporosis. All of this means that I do not take my lung disease very seriously, and because I take a lot of medication, I sometimes may even forget to take my medication for the lung disease.
Negative patients characteristics
In addition to deficits and impacts of the disease, the participants mentioned barriers to self-management of men with COPD, that were related to the characteristics of the patients’ themselves, which were categorised as negative patients characteristics. The patient’s negative characteristics included false beliefs, poor self-efficacy, feeling shame and non-adherence.
The false beliefs that men with COPD had about the disease or disease control factors are one of the barriers to self-management. Participant number 2 stated:
These sprays themselves consist of a series of small particles. They settle in the lungs and cause the lungs to deteriorate within a few years. When we use them, our dyspnea gets better at first, but gradually the lungs fail, so, it is better not to use them at all.
The interviews also revealed that men with COPD who believe that the management of the disease is beyond their abilities and have poor self-efficacy, adopt a passive attitude and do not try to manage the disease. Therefore, poor self-efficacy was recognised as one of the barriers of self-management in men with COPD.
The feeling of shame of men suffering from COPD from the onset of symptoms or taking medicine in the social environments was one of the factors that led these patients to prefer to stay at home permanently instead of attending social environments. Also, these patients felt ashamed and embarrassed of being dependent on others and receiving help from others, which led them to limit their activities. Participant number 4 stated:
Even though my doctor has told me to leave the house sometimes, I stay at home most of the time and don't go out. Because I can't go out alone and I'm ashamed to disturb my family members.
It was also seen in the interview with the participants’ non-adherence to the instructions and education given by the healthcare providers can be one of the barriers of self-management in these patients. In fact, the patients who were more adherent had fewer symptoms, disease exacerbations and hospitalizations than those who were less adherent.
Discussion
The findings of this study showed that knowledge, education, experience, family involvement and financial support are the facilitators and factors related to deficits include lack of education, lack of treatment support, lack of family cooperation, financial problems, medication obtaining problems and factors related to disease impacts include specific nature of the disease, residual effects, comorbidity and factors related to negative patients characteristics include false beliefs, poor self-efficacy, feeling shame and non-adherence are barriers to self-management in Iranian men with COPD.
In the current study, knowledge about the medications and disease control was one of the factors that enabled patients to better self-management. Therefore, knowledge was recognised as one of the factors facilitating self-management in men with COPD. Consistent with the present study, the studies by Russell et al and Korpershoek et al identified patients’ knowledge and understanding as one of the factors that facilitate self-management in patients with COPD. In Yang et al’s study, it was also seen that how many patients with COPD have a higher level of knowledge related to the disease, they will have a higher level of self-management.21
The findings of the present study showed that exercise and activity education, education to avoid the aggravating factors of the disease, education about medications, education about COVID-19 and breathing techniques education are among the factors that make patients have better self-management. Therefore, education was recognised as one of the facilitating factors of self-management in men with COPD. Managing COPD at home is a complex issue. Patients and their families can learn to live a better life. Education leads to improving the compliance of patients with COPD, changing their lifestyle and reducing the hospitalisation rate of these patients.22
The findings of the present study showed that having medication experiences and exacerbation experiences were among the factors that improve self-management in patients with COPD. Therefore, experience was recognised as one of the facilitators to self-management in men with COPD. Self-management activities increased over time as a result of living with the disease. Over time, patients become more familiar with their symptoms. Previous experiences and observation and evaluation of adaptive and therapeutic reactions to the symptoms and challenges of the disease make patients experts in managing their disease.23
The findings of the present study showed that family involvement and support is very important and effective in the management of COPD. Therefore, family involvement was recognised as one of the facilitators to self-management in men with COPD. In the qualitative systematic study conducted by Russell et al, it was also seen that family support can be one of the factors that facilitate self-management in patients with COPD.23
In the present study, it was seen that good financial status, family financial support and government financial support were factors that improve self-management in patients with COPD. Therefore, financial support was recognised as one of the factors facilitating self-management in men with COPD. In accordance with the results of the present study, it was found that a good financial situation in patients with COPD facilitates the resolution of treatment problems associated with the disease, patients are less dependent on their children, have more independence and are less ashamed and a burden to others.24 In Bauer and Schiffman’s study, it was also found that a patient with a high income was able to purchase a portable oxygen generator without being dependent on insurance, due to a good financial situation. This shows that the availability of resources has a positive effect on treatment.15 In the study by Skerry et al, most patients with COPD reported that insurance coverage enabled them to obtain the cost of medications, and some indicated that without insurance coverage or family financial support, they were unable to pay their medication costs.25
The findings of the present study showed that patients who received less education had difficulty in performing self-management activities. The study by Stellefson et al also reported that patients with COPD who have not received special education do not have the necessary skills to perform breathing exercises, controlled coughing or the use of energy conservation and rest techniques.26
The finding of the present study showed that self-management takes place in the context of the family and that men with COPD, whose family did not cooperate with them in the self-management of the disease, experienced many problems. Therefore, lack of family cooperation was recognised as one of the barriers to self-management in COPD. In this regard, in the study by Yadav et al, the lack of family cooperation was seen as one of the barriers to self-management in COPD from the patients and healthcare providers perspectives.17
The findings of our study showed that lack of treatment support or insufficient therapeutic support was one of the barriers to self-management in men with COPD. In line with the present study, Sami et al’s, study showed that lack of adequate insurance payment was one of the barriers of the participation of patients with COPD in pulmonary rehabilitation programmes, and the patients and their families complained about inadequate insurance support for treatment costs.27 In Fotoukian et al’s study, it was also seen that patients with COPD complained about insufficient social support systems. These patients need to be supported socially and economically by the government.24
The findings of the present study showed that most men with COPD had financial problems with their treatment. The financial problems had resulted in their inability to use the maximum available resources to manage the disease, which was a new problem for these patients in addition to the disease. Therefore, financial problems were one of the important barriers to self-management in these patients. These patients frequently experience exacerbations of the disease, which lead to hospitalisation and payment of its costs. In addition, these patients have to take different medications every day to control their symptoms, which creates a lot of costs for them. These are while, patients with COPD often lose their jobs or sources of income due to physical disabilities. In addition to these, the lack of fixed income or pension and low old-age allowance meant that these patients are unable to pay for treatment. As a result, these patients have financial problems.28 Financial problems lead to many limitations for these patients such as causes disruptions in obtaining medicine, accessing medical services, travelling to the pulmonary rehabilitation centre and participating in smoking cessation programmes.29
The finding of the present study showed that two main problems related to medications for patients with COPD have led to problems. The first problem related to medications obtaining was the scarcity of some original drugs in the Iranian pharmaceutical market. The most important of these drugs was Serotide Diskus, which was hardly available for most patients. It seems that this problem is only related to the country of Iran. In this regard, in the study by Fotoukian et al, mentioned the shortage of some drugs in the Iranian pharmaceutical market as one of the signs of the weakness of the official support systems, and one of the barriers to empowerment in patients with COPD, too.24 The second problem concerned the high cost of these drugs. This problem was also mentioned in studies from other countries. In line with the present study, patients with COPD in the study by O'Toole et al reported about high medication costs and used various methods to pay for them. Some American patients would leave the borders to go to Canada to get affordable medications. Some sent discount requests to pharmaceutical organisations to get a discount on the cost of medications. Some also reduced the dosage and amount of medication, so that they could take the drugs for a longer period of time. Some who had already purchased the medication and were told by the doctor to stop taking it or use a different spray continued to take it because they believed the cost was already paid for. Some also used sample drugs during doctor’s visits to avoid buying drugs from the pharmacy. Some also told the doctor about their financial problem, so that they could be prescribed a cheaper medication.30 It was also been found that some patients with COPD with financial problems did not buy the medicines according to the doctor’s prescription or did not buy all of them due to the high cost. Some took less than the prescribed amount.15
Smoking and being exposed to environmental and occupational pollutants cause damage to the lungs. The damage that smoking causes to the lungs is cumulative and, therefore, this disease is more common in the elderly because they have been smoking for a longer period of time. Therefore, the benefits of quitting smoking in improving lung function depend on how much damage has been done to the lungs at the time of quitting. Smokers who quit smoking after the onset of symptoms and extensive lung damage due to long-term smoking are expected to experience less benefit from quitting31 and those who were most exposed to these pollutants will not get good results even with self-management. Therefore, the residual effects of exposure to harmful respiratory substances are one of the barriers to self-management in men with COPD.
The findings of the present study showed that suffering from comorbidities is one of the barriers to self-management in men with COPD. Comorbidities are common in COPD32 and interferes with the management of this disease.33 In the study of Thorpe et al, comorbidities were found to prevent participation in physical activity and pulmonary rehabilitation in patients with COPD.32 Also, comorbidities can affect adherence to treatment, as many problems such as mental disorders, depression, visual impairment, functional limitations, cerebrovascular disease and Parkinson’s disease cause problems with medication adherence. In addition, cardiovascular disease can limit the use of long-acting bronchodilators. Taking multiple medications also has an impact on adherence, as it has been shown that regardless of the type of medication, the number of medications used is one of the factors affecting medication adherence.34
The findings of the present study showed that false beliefs are one of the barriers to self-management in men with COPD. The study by Dowson et al found that the most common reason for non-adherence to medication in patients with COPD was the false belief that the medication was ineffective and would damage the lungs in the long term.35 Also, in the study of Patil et al was seen that many patients with COPD avoided inhaler therapy due to their false belief and preferred oral medication. They believed that inhalation therapies should be continued without interruption until the end of life, which inhalation therapies reduce the strength of the lungs, and that these treatments have adverse effects on other body organs. Some patients also believed that inhaled medications are the last option to controlling respiratory symptoms and should only be used when the disease is advanced. Some patients believed that these medications weaken the airways and should be avoided as much as possible.36
The findings of the present study showed that men who have poor self-efficacy have problems in self-management of COPD. Therefore, poor self-efficacy was recognised as one of the barriers to self-management of COPD. In general, it can be said that poor self-efficacy in the self-management of chronic diseases impairs health and quality of life of patients. Poor self-efficacy leads to ineffective self-management, resulting in exacerbation of disease symptoms, frequent hospitalisations and poor outcomes in patients with multiple diseases.37
The findings of the present study showed that the feeling of shame and embarrassment is one of the factors that cause problems in the self-management of COPD. Therefore, shame was recognised as one of the barriers to self-management in men with COPD. In the study by Berger et al, it was seen that obvious signs of COPD, such as cough and sputum production, caused embarrassment in some patients. The use of inhaled medications and oxygen in public or the need for wheelchairs in large stores or airports cause embarrassment or shame in these patients. Self-blaming, unwillingness to cause trouble and pressure to others and unwillingness to appear ill or weak are other factors that cause shame in these patients.38 The feeling of shame causes these patients to hide their illness, leading to passive adaptation, lack of social support, increased likelihood of critical situations and delays in medical treatment.39
Strengths and limitations
This study was not limited to examining the experiences of patients with COPD, but by examining the experiences of family members and pulmonologists, provided a larger and more comprehensive view of the self-management in these patients. The qualitative methods used in this study helped to the deep exploration of self-management experiences of patients with COPD. But as with all qualitative studies, the applicability of the findings is limited and cannot be generalised to a larger population or used to represent the experiences of all people with the disease in other settings. However, attempts were made to ensure transferability through a rich description of the study context. A further limitation of the study was that only male patients participated in the study, which happened due to the assumption of difference between women and men in self-management behaviours.
Conclusion
Living with COPD is complex, difficult and lifelong and self-management is the only option that these patients can use to effectively deal with the disease. However, self-management is not an isolated behaviour and is affected by facilitators and barriers. Knowledge, education, experience, family involvement and financial support are factors that facilitate self-management and the deficits, disease impacts and the negative characteristics of the patients are the barriers to self-management. Healthcare providers and health planners can use the results of this study and strengthen the factors that facilitate self-management in these patients and weaken or remove barriers to self-management as much as possible, so that these patients use self-management strategies with maximum capacity to control the disease and through this, improve the health outcomes of these patients. Also, researchers can observe and measure or intervene and manipulate the variables found in this research by designing quantitative research and in this way, take an effective step in confirming the results of the present research and improving the clinical outcomes of these patients.
Data availability statement
Data are available upon reasonable request. The datasets used and analysed during the current study are available from the corresponding author upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by the Research Committee in Medical Research of Iran University of Medical Sciences under the code (IR.IUMS.REC.1398.510). All participants were informed of the purpose and design of the study and also the voluntary nature of their participation.Participants gave informed consent to participate in the study before taking part. In addition, participants were allowed to withdraw from the research any time they wanted.
Acknowledgments
The authors would like to thank all the patients, their families and the pulmonologists who participated in the present study and shared their experiences and insights with us.
References
Supplementary materials
Supplementary Data
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Footnotes
Contributors FR, ASB and FHB are contributors responsible for study conception or design, overseeing study implementation, providing methodological support to coordinators and revising the manuscript critically. FHB, ES and MAN participated in data collection, data analysis, interpretation of data and drafting the manuscript. All authors read and approved this final manuscript. FHB is responsible for the overall content as guarantor.
Funding This work was supported by the Iran University of Medical Sciences under Grant [98-1-25-14801].
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer-reviewed.
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