Table 6 Theme 2. The benefits of home-based PPC

1.The management of physical symptoms

“…the pain had been controlled for the last one month. It was managed well and I think it was because of Nurse A and her team’s help… her urine output was getting lower and I worried that it was a sign of urine retention. So, I discussed with Nurse A about the possibility of a consultation with the doctor…” (P6, 36 y.o mother of a child with rhabdomyosarcoma)

“…she also helps us continuously. When she visited us, she did the wound care…” (P7, 39 y.o mother of a child with relapse ALL and central nervous metastases)

“…it was when nurse R visited us… I saw my child, N, was bleeding profusely and vomiting. I was shocked, trembling, and scared. Thankfully she was there and helped us with this horrible condition…” (P8, 34 y.o mother of a child with neuroblastoma)

2.Motivation and psychosocial support for patients and their families

“…I remember, I chatted via phone calls or WhatsApp texting with the nurse at night, and it’s soothing. I think it is very important for the family with a sick child, especially a long-term sickness. This kind of support is very helpful…” (P2, 50 y.o mother of a child with neuroblastoma)

“…but N (my child) was getting brighter after knowing Rachel House’s team. We did not expect this. We salute the team for being able to lift N’s spirit because nurse D was very likeable… N was very happy with Nurse D. He survived quite long, about 1 year after being diagnosed… I think one of the most important factors is trust and I trust that Rachel House could help me.” (P1, 43 y.o mother of a child with retinoblastoma stage IV and frontoparietal metastases)

“…The sharing session was very helpful for me. I could share not only about my child’s condition and treatment but also about emotional things. I felt at peace because I knew that other than my family, someone was there to soothe and strengthen me. So, the team was calming for us, especially at the terminal phase when we were not ready for the uncertainties to come…” (P12, 40 y.o mother of a child with medulloblastoma)

3.Financial assistance

“…after receiving the home-based PPC, I hoped to continue to care for my child at home… then I could work from home to help my husband earn money for our family needs…” (P3, 43 y.o. mother of a child with relapse ALL)

“…I could say we received economic benefit… because it was true that our expenses for medical care reduced after we received the home-based PPC…I also did not have to worry about the hospital bills if he was admitted in the hospital…” (P6, 36 y.o. mother of a child with rhabdomyosarcoma)

“…Rachel House was helping us a lot by giving us that expensive morphine. Moreover, they also gave us other medications that was needed which, when combined, cost a lot…” (P7, 39 y.o. mother of a child with relapse ALL and central nervous metastases)

4.Logistic support

“…N (my child) also received diapers… When he could not walk and needed a stroller, Rachel House team brought us a stroller. It helped, especially when we needed to go to the hospital …” (P1, 43 y.o mother of a child with retinoblastoma stage IV and frontoparietal metastases)

“…they also gave us groceries, and milk. We knew that the donor gave us through Rachel House …” (P3, 43 y.o mother of a child with relapse ALL)

“…we received assistance several times, for instance during Ramadan and the pandemic, they sent us groceries…” (P7, 39 y.o mother of a child with relapse ALL and central nervous metastases)