Table 5

Themes and subthemes

Loss of myselfDisappointment in self when unable to play a social role
Loss of independence
Irritability regarding physical disability
Loss of purpose of life
Anxiety about finances that is increasing because I cannot work
Seeking reasons for the current situation
Stress about activity limitations
Discouragement and regret for past actions
Isolation from my surroundingsHaving no one who listens to my feelings
Not wanting to be a burden to others
Lack of understanding from others
Hard to move like others
Feeling of alienation from friends
Hassle associated with oxygen therapyAppearance with oxygen
Burden of going out with oxygen
Difficulty in moving because of pulling oxygen cylinderSense of restraint linked to oxygen
Pain when oxygen tube is pulled
Fear of illness progression/deteriorationFear of disease progressionAnxiety that illness will last for a lifetime
Shock of getting worseAnxiety about physical weakness
Anxiety and conflict regarding injection therapyAnxiety about breathlessness
Despair due to the possibility of starting injection therapy
Suffering from side effectsBalance between strong side effects and life
Endurance of side effects that cannot be tolerated due to deterioration of health
Distress due to side effects
Lethargy caused by side effects
Negative emotions caused by side effects
Decrease in ADL due to side effects
Ineffective countermeasures for pain
Resignation to having to cope with side effects
Rumination on illness due to breathlessnessAssociating illness with breathlessness
Emotional pain by dyspnea on exertion
  • ADL, activities of daily living; CTEPH, chronic thromboembolic pulmonary hypertension; PAH, pulmonary arterial hypertension.