4.2. Participant Observation and In-depth Interviews: Fieldwork Phase
The attributes of ADLs in COPD patients obtained in the fieldwork phase included variable strength, experienced dyspnea, changed communication patterns, and changed self-care patterns (
Table 2).
| Categories | Subcategories |
|---|
| Variable strength | Bad days |
| Good days |
| Inconsistency between the severity of disease and disability |
| Experienced dyspnea | Factors affecting dyspnea |
| Emotional response to dyspnea |
| Dyspnea and limitation |
| Changed communication patterns | Maintaining family relations |
| Adaptation to role changes |
| Maintaining medical relations |
| Socioeconomic communications |
| Changed self-care patterns | Change in pattern of performance of activities |
| Elimination and replacement of activities |
The first attribute of ADLs in COPD patients was variable strength. The physical condition of COPD patients might not change for several consecutive days. Patients divide their days into capability and disability days. Disability days are the days when patients are not capable of performing any activity; however, on capability days, patients are capable of performing many tasks.
“Some days, I cannot even pick up a matchstick.”
Patients have variable physical and emotional strength, fatigue, and psychological function levels on different days.
“Some days, I do not want to see anybody, not even myself.”
Some patients with more severe disease reported relatively higher activity. However, some with milder disease reported relatively lower activity and higher disability. For example, a 74-year-old male with stage COPD III reported hiking every weekend and exercising in a park every weekday with his peers.
The second attribute was that experienced dyspnea not only affects ADLs in COPD patients but is also a part of their ADLs. Dyspnea is very frightening for patients and can create a sense of impending death. Fear of a dyspnea attack indirectly inhibits the patient from attempting many activities. One participant said:
“I always suffer from dyspnea. When eating, when taking a shower ... all the time.”
On the other hand, there are some factors and situations that definitely cause dyspnea or affect it, such as climbing uphill, using stairs, and some emotional situations.
“When my grandchildren are coming to visit me, I totally forget about my dyspnea…. I start cooking for them.”
Patients believe that several factors affect the occurrence of dyspnea, such as air pollution, hot or cold weather, and frustration and anxiety.
“My dyspnea becomes much worse when the air pollution is high.”
The third attribute of ADLs was a change in their patterns of communication. Patients often recognize the importance of family relations after they become severely ill. One participant said:
“I only get out of bed for the sake of my sons.”
The role of a patient in their family as a spouse or parent or in their community changes after the onset of COPD. Patients often try their best to play their previous roles; however, they eventually cope with the change when they no longer have the strength or the energy to fulfill their previous roles.
“There are times that I cannot even park my car in the garage.”
Maintaining good communication with medical professionals helps them better control the disease and cope with the new situation. Some of them were still working despite their activity limitations in order to make money, prevent negative thoughts and a sense of futility, and remain in touch with individuals. One patient explained:
“I had a bakery, and I used to bake bread. But I cannot stay close to the oven now because my dyspnea aggravates. Therefore, I drive a cab now.”
Change patterns of self-care were the fourth attribute of ADLs. These patients try to simplify and slow down their ADLs. They reduce the intensity, level, and number of activity attempts in order to maintain their independence. One patient said:
“I have placed one chair in the kitchen and one in the bathroom. I sit on the chair and cook.”
The findings also revealed that the intensity of activity decreases in COPD patients. These patients walk slower than before for two reasons. One is to maintain their independence, and the second is to prevent dyspnea attacks and the associated limitations. Therefore, although COPD patients cannot be as active as they were prior to the onset of the disease, they tend to try their best not to be dependent on others. They often try to rest between activities. They also take their medications with them wherever they go. They live in places without stairs or with elevators and gradually learn to cope with their disability. They spontaneously cut down or eventually quit some of their activities and reserve their energy for more important tasks.
4.2.1. Working Definition of ADLs in COPD Patients (Fieldwork Phase)
Activities of daily living in COPD patients are affected by perceived shortness of breath and a continuum from relative ability to complete disability. Moreover, the pattern of communication and daily self-care in these patients has changed.