Table 5 Theme 1. The implementation of home-based PPC

1.Educate families to care for the patient

“…I learned many new things from the nurses. They taught me how to observe the effect of the morphine, how to write down the administration of morphine on the table (diary)…” (P6, 36 year-old (hereafter, y.o.) mother of a child with rhabdomyosarcoma)

“… He (the nurse) first demonstrated to me how to do the wound care, then he trained me to do it by myself. He observed what I was doing and gave me feedback until I could do it well. In addition, he told me to administer one or two morphine before doing the wound care so the pain will be less….” (P10, 53 y.o father of a child with Rhabdomyosarcoma stage IV)

“…Once my son was having diarrhea and vomiting, then I was told and taught about making oral rehydration salt (ORS) so my child won’t suffer from dehydration. Then he (the nurse) told me to stop giving milk temporarily…He also gave me knowledge about medication which I never knew before, such as prontosan, fucidin, to cleanse the infection area…” (P12, 40 y.o, mother of a child with medulloblastoma)

2.Care delivery

“…The approach he (the nurse) used when taking care of my son took into account his age and development stage. He let my son explore the medical equipment, before asking for his cooperation as he started to examine him. So, it’s not forcing but respectful of my son…” (P1, 43 y.o mother of a child with retinoblastoma stage IV and frontoparietal metastases)

“…The nurse communicated well and smoothly, respecting my child’s and parents’ willingness… The nurse will not even go one step further if the family did not allow…” (P6, 36 y.o mother of a child with rhabdomyosarcoma)

“…The nurse from Rachel House always encouraged us, especially when we were feeling down. They gave us a chance to express our feelings and openly asked us about how they can support us… Nurse R was also acted as a “bridge” to communicate my child’s condition to the doctor at the hospital…” (P8, 34 y.o mother of a child with neuroblastoma)

“… Nurse D gave us explanation in a way that we could understand, so we could decide about what was needed and important for our child… it was very helpful….” (P10, 53 y.o father of a child with Rhabdomyosarcoma stage IV)

3.Accompaniment at end-of-life phase

“…We received explanation before about what might happen to my son. It was hard though, but we appreciated this so much and could prepare ourselves for the worst … When my son had seizure, the explanation became real and the nurse was there to support us…” (P1, 43 y.o mother of a child with retinoblastoma stage IV and frontoparietal metastases)

“…Nurse A explained to me about the disease pathway and progression. She also informed me about the end-of-life process. When the time came, while I was out of my mind, she was there to remind me that this might be the end-of-life stage that we had discussed. She was there to support me in the difficult time…” (P6, 36 y.o. mother of a child with rhabdomyosarcoma)

“…The nurse from Rachel House informed me about the signs of end-of-life phase. I thought that was time for us to be prepared for the loss…” (P7, 39 y.o mother of a child with relapse ALL and central nervous metastases)

“…Even at the end stage of my child’s life, nurse D was there to accompany my family. I was finding many signs, for instance the bluish nail, the breathlessness, and so on. Then I asked nurse D. He answered my questions that these might be symptoms of the end-of-life, then was there to support and comfort me and my husband…” (P12, 40 y.o mother of a child with medulloblastoma)

4.Bereavement support

“…The nurse came to the funeral… The nurse even came for the Remembrance Day, a week after my son passed away and it was until the evening…” (P1, 43 y.o mother of a child with retinoblastoma stage IV and frontoparietal metastases)

“…Nurse A had told me that she will visit us some days after R left us… when she came, my parents were still with us, Nurse A encouraged us to express our feelings and thoughts… when we grieved, Nurse A gave us time and the chance to express our grief, we did not need to avoid or deny it, we could cry if we felt sad, we were allowed to remember our beloved child. She enlightened us that grieving was a normal process…” (P6, 36 y.o. mother of a child with rhabdomyosarcoma)

“…The nurse visited us about a week after he passed away…The nurse gave me support and encouraged me to heal. I then experienced that Rachel House gave me support even after I lost my child, the nurse always checked up on me…” (P7, 39 y.o mother of a child with relapse ALL and central nervous metastases)

“…Nurse R always reminded me that it was the Higher plan. My child wanted to rest well, so I did not need to feel guilty even though I was sad about losing him….” (P9, 40 y.o mother of a child with Meningioma Atypical grade II)