Table 3.
Themes, subthemes, and participant quotes.
| Theme and description | Subthemes | Description of subthemes | Selected participant quotes |
|---|---|---|---|
|
Interaction with the healthcare system Information regarding the disease, treatment, and how to navigate the healthcare system |
Disease-related information
|
Information related to the disease | Clinicians have to be very, how do we put it, very understanding and this and explain to the most basic level so that the parents do understand what this diagnosis means. If medulloblastomas, who does it mean? Where is it located? And what can it implicate? What can it affect and how will the progress be like? – HCP06General disease information I see, what symptoms were present before this, in my child. Then I try to remember, did my child have them before this? Or did we not realize or forget? – C05Disease symptoms I tried to search for my child’s diagnosis of hepatoblastoma. From the percentage, 90% of those who underwent surgery and chemo, will usually recover, based on my search. – C06Prognosis |
Treatment-related information
|
Information related to treatment | They will sometimes… not always… they will sometimes tell us things like, “Ah yeah! There’s another kid also with similar condition and hospice also seeing.. and he was trying this alternative treatment, and it has.. it seems to be quite well.” – HCP03Complementary and alternative treatment Because the doctor said the condition was serious, and so that my child can recover quickly, I was willing to agree for surgery and for chemotherapy – C06Treatment decision-making Each time the doctor gives the medications, she will explain.. okay, for example, if they give MTX, he will get ulcers, so he will need to gargle and clean his mouth regularly. – C03Treatment adverse effects |
|
Health system navigation
|
Information on how parents can access the health system effectively and reduce barriers for healthcare services | If they have PT/OT [physiotherapist or occupational therapist], can they suggest something that is practical and something that’s more practical to the parents since they have kids, right? Maybe like stroller or any other equipment that they might have known? – HCP03Obtaining suitable medical equipment Some parents don’t know the importance of coming for follow ups… You need to like explain to them, they can’t really like stop the medications on their own, right? – HCP08Follow up and monitoring It would be very helpful if they can explain what is the difference between the PC [palliative care] team in the hospital and the PC team in the community. What are the limitations the community team may face… – HCP06Understanding the role of different healthcare professionals |
|
|
Care for the child at home Direct caregiving for the sick child |
Basic activities of daily living
|
Caregiving related to the child’s basic needs for daily living | I asked the doctor about diet. The doctor told us, can give any food, but some types like vegetables need to be cleaned thoroughly and cooked properly. Cannot eat vegetables that are partially cooked or soft-boiled eggs. – C02Diet and nutrition Worried of vomiting if she doesn’t want it [the food]. If we force, she may totally refuse to eat. This will disturb her meals. So, to get her to eat, we get the vegetables that she will eat. – C06Behavioral issues related to feeding So once I bring my child home, then where do I put him or her, how do I position him or her, you know. If let’s say for feeding, what do I do? And then, if let’s say, they’re uncomfortable, then how do I make them more comfortable using whatever I have at home? – HCP04Positioning, transfer, and mobility |
Medical caregiving
|
Caregiving related to child’s medical and healthcare needs | If at home, we have to clean it ourselves. So at the hospital, the doctor will say, before you go back, when she was first admitted, before you go back, you need to learn how to clean it. If you don’t pass, you cannot go home. – C07Home nursing and tube care Which symptoms they need to panic? Which symptoms may not need so much of panicking? When do you need to rush to the hospital and when it can be handled at home? – HCP06Managing symptoms at home What we needed to know were the timing for the medications, because we need to know about the medications.. we needed information on how much is the dose, how to keep the medications, so these things are important to us – C04Medication management We did not simply accept visitors right now. Even if neighbors wanted to visit, we said for now, we said it nicely.. I told them we don’t want to accept visitors yet because my child is still in poor condition. They understand. – C04Preventing infections |
|
Psychosocial caregiving
|
Caregiving related to the child’s psychological and social well-being | The parents’ roles, in handling whatever issue regardless whether it’s education or whatever.. the main are the parents, not teachers, not doctors.. Doctors only help but the main role is the parents’.. – C04Parenting a sick child The doctors did explain that at the moment he can’t go to school, because he has many hospital appointments. Daycare once a week. After that, chemotherapy three times a week right? – C08Schooling and education |
|
|
Psychosocial support for parents Provision of support to meet the psychological and social needs of parents of children with cancer |
Practical support needs
|
Tips or advice to obtain practical support. | His younger sister also needs my care. If I come here, who will take care of my other children? My sister is around, it’s easier for me. She takes care of them at home. – C09Care for other siblings Sometimes, if we don’t have to bring him along, my husband and I come on a motorcycle. I only rode the motorcycle... Sometimes, if we need to bring him, then we need a car. And if we take the car, we need to find parking... – C08Transportation |
Self-care for caregivers
|
Tips or advice on maintaining own health to enable parents to continue caring for the child | If we are not strong, don’t take care of ourselves, how can we show to our child, so that she will be strong, right? If we just become like children and cry, our child will become weaker right? Even weaker. – C06Caregiver coping strategies Thank God, I have a strong daughter here. If not, I don’t know what to do. That’s why every day, morning, I wake up, I pray to God … my daughter [will] always [be] strong.. and can go through and face this kind of treatment. That’s what I always pray for.. she [will] always [be], every day, healthy, strong. – C13 Caregiver coping strategies/Faith based beliefs and practices Find out who’s the next best caregiver at hand. You have to ask them to take turns, take time off and relax. Some, especially mothers, it’s very difficult to say this to them. When we tell them to take time off, they find that it’s very non-virtuous. They find it sinful in fact, to leave their child in that condition to take a break. – HCP06Respite care |