TABLE 3.

Quotes, sub-themes and themes identified in this study through the analysis of interview transcripts.

Theme	Sub-theme	Examples of the quotes
Living with fear and anxiety	Sickness	…. (he had a lung infection, he was warded for 3 months and he was on antibiotic treatment.) (PNO 6) …. (he would always fall sick; he would always have a fever. And if he ever had fever or coughing, it would usually last around a month or so, he needs to see the doctor twice.) (PNO 9) …. (When she was 7, she was admitted in and out of the ward and had several operations for the lung infection that she had) (PNO 7)
	Psychological issues	……. (Quite sad. If I were not asked about it, I would feel just fine, but if I had to trace back the memories of it, it is quite emotional for me.) (PNO8) …… (We cannot be telling others how we feel inside) (PNO3)
	Fear of infection	……. (When we came back from work, we need to clean off everything) (PNO10) …… (But because we did not know about this, the thing needs to be much cleaner than it already is) (PNO2) …… (When we got to know this, we didn’t bring her out to public places, food-wise, we are really careful with that, so, whatever food that is exposed, we did not give her to eat, so it’s not so obvious after that. We kept her away from people who are sick. Fever or cough, we kept her away.) (PNO3)
	Hereditary issues	…. (if I am pregnant with a boy, I am afraid that I have that 50% chance of having another baby just like my son.) (PNO8) …. (So, when I wanted to get pregnant for the 4th time, my husband said, that he doesn’t want more, 3 is just enough.) (PNO 8) …. (Because my firstborn had passed and now my second one is sick, plus the doctor kept saying that my son wouldn’t live very long, it makes me feel that for as long as I live if I hadn’t had any child also I wouldn’t mind.) (PNO 9)
PID healthcare support struggles	PID health system	…. (After I came here and Dr. Intan had sent his blood to the United States for DNA tests, so now it’s clearer, and also, we knew that it is not NOD 2 but XIAP that had some connection with HLH and Crohn’s disease.) (PNO 5). …. (Yes. Now we are getting treatments in HKL, it used to be very hard and no place to go to seek treatment, but now, they have a specific ward just for them.) (PNO 9). …. (Before that I haven’t even met anyone from the immunologist team, they just gave me the name of the disease, the category. So then I looked it up. Then I got more confused than before, and I started to think of getting on ways of how to get him out from the hospital) (PNO10).
	Delay in the establishment of diagnosis	…. (I would like to stress on the journey of the diagnosis, and then the treatment and how trickle it is to get the proper treatment. So those are the parts that I need to stress out.) (PNO 10) …. (It is like she has one, but the doctor did not properly diagnose her yet.) (PNO 7) …. (He also took medication for TB, but it did not work because it is not TB…. I did not count those treatments as not helping but it’s just that at that point in time, the doctors had not found the real underlying cause of his problem.) (PNO 8).
	Treatment	…. (So, his life now depends on the IVIG.) (PNO8) …… (every time that we had to go for IVIG, we were placed in daycare, because the IVIG procedure would take about 6 h or so.) (PNO 10) …. (after this IVIG, there is no more coughing, and fever, he is like a normal child.) (PNO 5)
	Financial issues	…. (I would only have a financial problem because we are only gardeners.) (PNO 6) …. (No issue, he is still a child at that time, medication and treatment is still free, schooling also free as the admission is supported with a referral letter.) (PNO 9) …. (The most important thing is that our work are secured because we didn’t take a lot of leave) (PNO5)
	Child healthcare	…. (his father took turns looking after him in the wards because when he is admitted, it is not for a short period.) (PNO6). …. (I have a maid that is good at taking care of children.) (PNO 5)
Knowledge	Disease understanding	…. (Previously I only knew the type like XXX. When I entered MyPOPI, it was then I got to know that there are other types of PID that I haven’t even heard about.) (PNO 7). …. (But if we have the kind of society that lacks awareness and knowledge or we are surrounded with those kinds of people that does not have the awareness about this disease.)(PNO8)
	Educational issues	…. (he has been absent since last year.) (PNO 10) …. (At the age of 18, in March, he got his SPM results, and he got 7A’s…. he became a top student and one of the school prefects.) (PNO 6).
Social constraint	Social isolation	…. (We couldn’t send him to a nursery, because we are worried about him mixing around with other kids.) (PNO 7) …. (bit traumatized, we would only stay at home.) (PNO 2)
	Relationships	…. (But due to financial problems my husband went to Singapore and did not return since last year.) (PNO 6) …… (She is in Penang, and we are staying in Melaka.) (PNO 6) …. (I no longer have a husband.) (PNO4).
Coping	Acceptance	….(we need to accept the fate and be patient)(PNO3). …. (but when you see that there are other people’s children who are much sicker than our child, we would be thankful) (PNO1). …. (It feels normal, we just embraced and accepts it. No other feelings, we just accept what Allah gave to us.) (PNO 4).
	Emotional hygiene	……. (We just hope that his illness is in a stable state and doesn’t attack again.) (PNO5) …… (But yeah, the only thing that we can do right now is to find a way in making sure that he will get the best treatment, all the best ones, to secure his quality of life.) (PNO10) ……(My son was given until 18 years and with treatment and proper medication he might survive until 60 years) (PNO9).
	Child health improvement	…. (I can say that my son is as healthy as any other child.) (PNO 8) …. (So since he can walk again, he is working, he is a Grab driver.) (PNO9) …. (he applied to study teaching, and he got in.) (PNO6)