Table 3

Verbatim supporting each theme and subtheme

ThemesSubthemesCategories under subthemesVerbatim
People with COPD and family level facilitators and barriersFamily supportOne patient said:
"You are able to see me today just because of my supportive family. If anyone does wrong in the family, there is another member to watch them. Overall, all family members are very responsible, and they do take care of much than me”. (IDI: F60-65Y)
One of the participants felt unsupported—who would only provide food if certain conditions were met. She expressed her voice— “She (daughter-in-law) often tells me that I am doing drama (pretending to have disease symptoms). She (daughter-in-law) say—If I get support from you (….) you will get food else I don’t have time to cook food for you”. (IDI: F60-65Y)
One patient expressed the expectation as:
“I think family (son/daughter-in-law) is the first who should look after us (COPD patients) for medicines, emotional support (listen to our feelings and concerns). I think I am a burden for them. If I was their children, I would take care of their conditions with high priority (….) every support (visit to doctor, medicines, food) but they are not doing so”. (IDI: F50-55Y)
One patient reflected her support as—“My son is very supportive. Whatever medicine I ask (showing the tablets sample), he gets it to me from the market”. (IDI: F50-55Y)
The above quote suggests that family support was in part determined by the level of information about the disease among the family members of the patients.
Health literacy: understanding of the disease, medications, health services and prognosisUnderstanding the cause of diseaseA woman with COPD for >5 years shared her understanding of a disease that she got from a doctor as “I got to know about the cause from a doctor whom I visited in India (Purnia, Bihar). He (the doctor) said to me, and it's due to a lack of energy and cold temperature”. (IDI: F50-55Y)
One participant expressed her experience as “I feared to sleep with my children because it (COPD) will transfer to them, so I sleep alone in the next room”. (IDI: F50-55Y)
One participant shared her experience of what made her quit smoking.
“The doctor whom I visited was excellent, and he tried his best to make me understand the disease and linkage of tobacco to my condition. Despite this, I was unable to understand either Nepali or Hindi, but, he found some way for me. (Patient laugh) He explained to me by demonstrating by puffing cigarette (moving fingers at his mouth like the smokers) and indicated it causes difficulty in breathing (by touching chest). He was an excellent doctor that I ever visited”. (IDI: F60-65Y)
This had an influence on the participant who subsequently stopped smoking.
Information on medicationsOne patient expressed her view as “taking multiple medications (allopathic, ayurvedic and homeopathic) at the same time will have a dynamic cumulative effect to cure the disease”. (IDI: F60-65Y) The interviewer then asked who got you the medicines. And from where? Patients replied—“My son got it from medical shops. He (son) is very supportive (….) and gets me whatever I ask for”.
One male patient said:
“I have three diseases (COPD, Hypertension, and Diabetes) but, I do not know either I should take medicine for all disease on a daily basis. To have all the medicines at the same time is really worrisome for me”. (IDI: M50-55Y)
Hopes of being curedOne of the patients said—"I took medicines with many doctors from Nepal and India but still the condition is the same. Now, I believe there is no medicine discovered for this disease”. (IDI: F60-65Y)
Poor emotional well-beingOne female patient said:
"I make plans for my life, but suddenly it (Breathlessness condition; COPD) come in my way. It (COPD) does not allow me to do anything. It (COPD) always destroys my vision. This can kill me at any time (COPD)….I am afraid”. (IDI: F50-55)
Another female patient expressed her pain as—"I am fed off from this life, struggling with pain given by this condition. Nowadays, I like to kill myself because I am not able to find a way for my life”. (IDI: F50-55)
One of the participants said—“I believe motivation and support from the family are the biggest factors for bringing change in a person's life and behavior” (IDI: M70-75Y)
Community-level facilitators and barriersComplementary and alternative treatment, driven by social networkOne patient said:
“I often use these medicines (Basil leaf and turmeric powder) for improving my conditions because it is easily available. Sometimes it works for decreasing cough but not always”. (IDI: F60-65Y)
Another patient expressed her view as:
“One person near to my village said to me that he has the medicine for a complete cure for this disease. He provided me with a paste, smelling like ginger and garlic just for Nrs. 100 (0.95 USD). He said, by eating this (paste) thrice a day for a month (three spoon/day) you will get rid of this disease completely. Unfortunately, after eating that (paste), I experienced many side effects involving severe heat production in the body, migraine, and weakness and, eventually, I stopped taking it”. (IDI: F70-75Y)
Similarly, another patient said—“I visited Shaman (Dhami: who exercises evil spirits and sickness from the sick body) after the diagnosis of this disease (COPD). He (Shaman) provided me with a paste (tobacco and cloves, which I was not aware of) and told me to eat by putting in Betel leaves for six months. After consuming that for a week, my conditions got very worse, and I dumped those all (paste) and started seeking treatment from a doctor”. (IDI: F75-80Y)
Community engagementA FCHV said, “Leave about the uneducated one, most educated people are unaware of this disease and its risk factor”. (IDI: F40-45)
A HCP highlighted the importance of FCHV in the management of COPD conditions, as illustrated in the following quote
“FCHV can play an important role in improving self-management practices among COPD patients. They know patients in their locality, and they can change their behavior very easily. I mean, just involving health professionals is not a solution for management of the chronic disease; the integrated approach is needed”. (IDI: M30-40)
FCHV added—"In our culture (Tharu and Madhesi community), particularly daughters visit their parents with sweets, curds, bananas, meat items. Factually, they (daughters) don't care about the conditions of parents. I think there is a need for education about the foods for the patients of this disease, which is not happening at all”. (IDI: F40-45)
A doctor said:
“Women from Hindu faith practice fast (for example, Jitiya, Chhath, etc) as a part of their culture and traditions for the good of their family members. They have a firm belief in fast, during which they do not take water, food, or medicine”. (IDI: M30-35Y)
Service level facilitators and barriersBoundaries to patient-centred carePatients’ views
Patients’ demands of doctor time and attentionOne patient said:
“Doctor does not pay attention to our voice at all. They (doctors) just pretend to listen but they do not. Because the doctor whom I visit never respond to my query. He just sayYesYesall will be fineand……That’s it all”. (IDI: M75-80)
Another participant reflected a lack of engagement by the doctor:
“When I went to the doctor, and I shared my health problems. He did not listen to my problems at all. He just took my report (spirometry) and started writing medicines”. (IDI: M70-75Y)
One patient shared her experience with information about physical activity. “He (the doctor) said to me to do exercise when you felt comfortable(…) Its good for health. I do not know what exercise I should do?” (IDI: F50-55Y)
Limited confidence of patients in communication with doctorOne patient who noted the importance of family member involvement in the communication with the doctor stating, “I visited the doctor with my son, and he speaks to the doctor in the language that doctors used (Nepali). He (son) reflected my concerns to the doctor”. (IDI: F50-55Y)
A participant who cited lack of confidence is the barrier to communicate with doctors said, “When I see a doctor, I lost myself and cannot tell my health problem that I was supposed to”. (IDI: F50-55Y)
Limited skills and expertise of the doctors in behavioural changeWith regard to physical activity for patients with COPD, one patient said—"First of all I do not know the steps of exercise, and the next thing is that how exercise will benefit the COPD patients like me. If I were explained both I would have practiced, but I was just told to do exercise, so I ignored it”. (IDI: F50-55Y)
Another participant said, “Medicines is better right, why do we need to do exercise?” (IDI: F50-55Y)
An example of how a male participant felt for giving up smoking is presented below:
“Doctors told me—don’t smoke, and you will be okay with time. But still, I am not able to find a way to give it (cigarette) up”. (IDI: M50-55Y)
Frustration with doctorsA woman who sought healthcare said:
“…. I went to Kathmandu (Bir Hospital, Nepal) for the first time. He (the doctor) checked my health and provided with medicines. I took that for six months but no improvement. I and he (the doctor) gave the medicine by doing some lab and physical check-up…. No improvement…After that, I went to Darbhanga (India), and the doctor said—these symptoms are because of weakness and he (doctor) gave me many medicines, but they don't work. Then, after a year I visited a doctor in Biratnagar (Private hospital, Nepal) and I took his medicine for one year and then he (the doctor) said—this seems to be chronic respiratory disease and I (the doctor) am not the specialist. He recommended me to visit BPKIHS, Dharan (Tertiary level hospital with a medical college, Nepal), where I was diagnosed with this disease. Why do they prescribe medicine if they (the doctor) could not diagnose the disease? This is very frustrating”. (IDI: F50-55Y)
A man with COPD reflected,
“…. I don't have information that a respiratory doctor checks this disease (COPD). I visited many doctors (five doctors) in the process of diagnosis of COPD. If I had the right information, I would not have to suffer much just for diagnosis. It (diagnosis with many doctors) put me in debt”. (IDI: M75-80Y)
Providers’ views
Limited skills of healthcare providersA doctor said:
“I am here for the peoples but, I don’t have exposure in managing COPD”. (IDI: M30-35Y)
Same doctor said, “I have not heard of any special breathing exercise for COPD patients. Well, physical activity does have benefits for COPD patients of lower age but not for older age patients”. (IDI: M30-35Y)
One HCP stated that:
"Patients need information on conditions and medications, motivation, and support for adopting lifestyle behaviors. This is unfortunate that we don't practice because of the time factor”. (IDI: M30-40)
Adding to this, a nurse said—"There is a need for improvement of communication between patients and service provider without which behaviour change is critically difficult. HCPs need to develop skills to respond to patients in such a way that their (patients) situation should de-escalate and patients get ready to adopt healthy behavior”. (IDI: F25-30)
Patients limit in self-managementA nurse working at peripheral health system shared her view by stating that:
“In this rural setting, very few people know about this (COPD) disease and its risk factor. More importantly, people lack information about the right health center where they can get the right services for a respiratory problem”. (IDI: F25-30)
One HCP said—“we (peripheral health facilities) have nothing on COPD. I do not know if centre (Department of Health Services, Ministry of Health) have materials for educating about COPD”. (IDI: M30-40)
Patient blameOne HCP stated that:
"Despite advising the patient to give up cigarettes, but they don't listen at all. I (HP) feel they (patients) don’t want to change”. (IDI: M30-40)
Poor family supportOne HCP said:
“Through our social system is strong but people with chronic disease like COPD are not receiving adequate support from the family members. There should be an educational program focusing the family level to create enabling environment for COPD people”.(IDI: M30-40)
A FCHV said:
“Patients belonging to low income family, particularly Dalits and Indigenous community usually do not get enough family support or care. They (family members) do not have enough money to take patients to doctors and purchase good food (nutritious food). In some families people of chronic disease are subjected to abuse”. (IDI: F40-45)
Quality of care: limited service at the health post (HP) and primary healthcare centre (PHCC)A middle-aged woman said:
“Health staff at the HP/PHC provided this (Salbutamol) free medicine to the person who comes from power (political background people of their relatives) or who are educated. One nurse (Pahadni—a slag used for people of different origin) gave me when I said I am the sister of a local leader”. (IDI: F70-75Y)
A man with COPD for more than >3 years said:
“I heard that services at government health facilities (HP/PHCC) are of no use. They (health professionals) always say patients they have not received medicine from the top level. So, I have never been there better I go to private doctors”.(IDI: M70-75Y)
When researcher asked how do you see the quality of care at HP/PHC? Patient replied—“If the diseases cannot be treated at the local level means they is no point of rating the quality. Therefore, I would say there is no quality at all”. (IDI: M70-75Y)
Healthcare system-level gapsIn this line, a nurse expressed herself as:
"Infrastructure is basic for delivering care at PHCC level. We have building (PHCC/HP Physical infrastructure). We (health facility where she was working) don’t have an oxygen cylinder or nebulizer that is essentially required at PHC or nor the relevant medicines for COPD patients. See (pointing to X-ray and ECG room by nurse)there are X-ray and ECG, but no one knows how to operate?” (IDI: F25-30)
A doctor said—"We (health professionals at peripheral health system) always send the request in advance to the district, but unfortunately medicines never reach in time. This part is most important but is widely ignored by our system”. (IDI: M30-35Y)
Moreover, a doctor added “we (local level health system) do not have financial resources to implement any program for COPD”. (IDI: M30-35Y)
  • COPD, chronic obstructive pulmonary disease; PHC, primary healthcare; PHCC, primary healthcare centre.