Of the 20 children, 11 were male. Ages were < 1 year 3 (15%), 1–5 years 6 (30%), 6–10 years 4 (20%), 11–15 years 6 (30%), and 16–20 years 1 (5%). Thirteen came from Port Moresby and 7 had been referred from outer provinces that required air travel.

Nine children had cancer (5 retinoblastoma, 2 acute lymphoblastic leukaemia, 1 neuroblastoma and 1 germ cell tumour). Eleven had non-cancer diagnoses (4 post tuberculosis bronchiectasis and pulmonary hypertension including one with HIV and 2 with multi-drug resistant tuberculosis, 2 complex congenital heart disease, 2 post tuberculosis severe cerebral palsy, and 1 each of severe thalassaemia and hemosiderosis, multiple congenital anomalies and severe Guillain Barre syndrome).

Most children were in category 1 of life-threatening diagnoses: an illness where curative treatment may be feasible but may fail, including cancer. 20% had category 2, an illness that may involve long phases of treatment aimed at prolonging life, but premature death is still possible, such as HIV and bronchiectasis. 10% and 15% were categories 3 and 4 respectively: progressive illnesses with no curative treatment and illnesses like cerebral palsy, conditions that may deteriorate unpredictably, but are not generally progressive.

The main significant symptoms experienced by these patients at the time of interviews included pain (9), dyspnoea or respiratory depression (9), visual loss (5), bleeding and anaemia (5), feeding difficulties (3), severe motor dysfunction and mobility impairment (3), and fever (2). Treatments provided that have a palliative role were analgesics (9 received paracetamol, only one received morphine and pethidine), oxygen therapy, physiotherapy, nasogastric feeding, and blood transfusions.

The caregivers interviewed included 8 fathers, 7 mothers, 3 grandmothers, and one each sister, auntie, and uncle. The themes explored in the interviews included: the parents understanding of their child’s illness, the parents’ perception of the child’s symptoms, the emotional burden the child’s illness had on the family, and to what extent the parents felt supported by health care staff.

Three parents knew their child’s diagnosis, however 16 could describe it in their own descriptive terms but did not know the name, and 1 was unsure.

Most parents/guardians were able to understand their child’s illness even without correctly naming the diagnosis and with that understanding, most were able to know the respective palliative care needs of their child and help accordingly at home or in the hospital.

“Heart disease problem, em gat hol lo heart” (It is a heart problem, there is a hole in the heart)

“Problem lo lung, pressure high lo lungs blo em so wokim em sotwin” (It is a problem of the lungs, the pressure is high in her lungs, so she has shortness of breath)

“Mi no clear lo name blo sik but em fungus” (I do not know the name of the illness, but she is sick with a fungus)

Parents or guardian had perceptions of the child’s palliative care needs and described it in their own descriptive language (Table 3):

Table 3 Parents perceptions of troubling symptoms and palliative care needs

Parents and guardians expressed strong feelings about their child’s predicament (Table 4): 57% were anxious, sad and / or depressed. 14% of parents and guardians thought it was their fault while the other 14% of parents were at peace. When asked whether we had given them an opportunity to express how they felt: 50% of parents and guardians said, “no”; 45% said, “yes”; and one said, “they do not care how they felt”.

Table 4 Emotions expressed by parents regarding their child’s situation

Most parents (81%) were given the chance to talk about their child’s plan of management while 18% of parents were not happy, stating that they are still in the dark and that doctors talk to themselves most times during wards rounds and do not explain their child’s management plans in detail.

“Ol puttim oxygen tasol na me sindaun stap. Mi stap lo tutak yet” (They put him on oxygen and that is why I am sitting here. I am in the dark)

“Lo ward rounds, planti taim ol dokta sa toktok lo ol yet. Ol no sa explain gut lo sik or marasin ol givim lo pikinini. Ol sa ting, mipla no sa understandim ol sapos ol explain lo mipla, ol ba tokim antap antap tasol” (During ward rounds, most times, doctors tend to talk amongst themselves. They do not explain well regarding my child’s illness or the medicines they are giving to my child. They think that we do not understand them if they explain to us. They explain superficially or briefly)

63% of parents and guardians were satisfied regarding their child’s management praising the nursing team for being up to date with their child’s medication and other needs in the ward. 27% were not satisfied, one parent stating that she is still in the dark in terms of her child’s management.

“Em no pilim pain more” (He is no longer in pain)

Nurses always up to date with meds, hot water, milk, they are on time

“Mi ting ol gim marasin ba orait liklik” (I thought that after the medicines were given, my child would be a little bit better)

Not really good

I’m still in darkness

“Mipla go kam, go kam, mi lukluk tasol. Em orait or?” (We are going back and forth, back and forth, I am just observing. Is he going to be alright?)

Parents were asked if the medical team have discussed the possibility of a poor outcome for their child. This had not occurred to the parents’ recollection in two-thirds. Most parents were not told of the possibility of having a poor outcome for their child, that is, either having a “poor quality of life” or “the possibility of death”.

Many parents showed faith, religious and otherwise: 25% of parents believed that God would heal their child and 20% believed that the medicines would heal their child. Another 20% were unsure and anxious, while the same percentage of parents (20%) were just angry. 10% of parents and guardians accepted the poor prognosis.

Health care workers perspective on paediatric palliative care

We explored nurses understanding of palliative care, their perceived ability to identify a child who needs palliative care, and their skills and resources for addressing palliative care needs for a sick child. The 10 nurses that were involved in the focus-group interview were very experienced, an average of 16 years of experience, however none had any specific training in palliative care.

These nursing officers were asked to explain what palliative care is in their understanding, the answers focused more on the care of chronically ill children with a poor prognosis, and optimising quality of life or “happiness” for parents and families.

Care of disabled, long-term patients

Supportive care of patients with poor prognosis, to prolong life span

Care of patient with no future

Poor prognosis patients, provide care to make them happy; we attend to child so parents must be happy.

Patients with no future, will die anytime; we provide care and spiritual needs and physical needs as well; if they are in pain, we give pain relief. We provide support to keep them going as long as they are with us in the ward.

Main focus and aim is to ensure parents are happy; and prepared to accept what is expected of patient.

The staff expressed that after learning that a child is now requiring palliative care the focus is more on dying (80%), while others expressed the need to focus on the provision of holistic care for the child in the time they have left (20%).

Patient will get treatment and stay, then die

Patient will live for some years and die

We treat them to the limit and after that, send home to stay and wait for their death

We as nurses must think of patient as a whole; their physical, emotional, social and spiritual wellbeing. Help them physically e.g., supportive treatment, and emotionally we must help them and that helps their mental wellbeing as well as their spiritual.

We think ‘This patient won’t make it’ in the next week or next month; we might not keep patient for long. We address patient’s needs pain relief; spiritual counselling; help parents at least accept what the child is going through and the fact that child may not make it in the end.

Nurses felt they had the ability to identify a child who needs palliative care and how to address these needs. Most of the staff assessed the severity of pain in children based on their experiences, rather than on any formal teaching.

From experience, the child cries. In bigger children, they can communicate so they call out. They are restless and do not sleep.

From experience, children who can talk, they express their pain by crying and by saying, “I’m feeling pain.

I normally assess them; and give first line analgesic like Panadol and if it doesn’t help then we get a doctor to order something stronger to relieve pain so parents will be happy.

We get doctors to put on pain medicine which is stronger than what is written on drug sheet, when pain gets severe.

If the parents come and demand that we give (analgesia)

When to give pethidine; I assess pain. Some chronic patients have been on pain killers for so long, they are kind of addicted, sometimes they are pretending so you must assess. If you reassure them and they quieten down then its psychological; sometimes parents get frustrated, so they demand, but don’t listen to parents; make your own assessment.

Doctors may commence patients, especially cancer patients on pethidine, morphine or codeine; so, when its regular, 6-hourly, we follow and give; if in between they are still in pain then we get doctors to order alternative pain killers. We give medicine at scheduled times but most times, they need spiritual counsellors to be around.

Pain can also be managed by non-pharmacological therapy, some listed by the health care workers include outings, video games, music video, music, watching TV, herbal treatment, lollies and spiritual counsellor or a chaplain.

Apart from pain, other symptoms that can be relieved by appropriate palliative care were listed as: urinary retention, excessive sweating, fever, itchiness, generalised body weakness, not walking or sitting, bleeding, pus discharge, swelling, depression and fast breathing.

Nurses felt that many of the children under palliative care may need spiritual help and this could be identified by observation, or older children may ask to read a Bible verse, or through their parents.

You will observe them sitting down and thinking a lot; walk in and out without any reason and stand out and gaze around

“Children themselves cannot talk; but parents are confused, worried.

As a Christian nurse, if you see a patient and your spirit is telling you to pray for them, you will have the feeling that the patient needs prayer.

From my experience, they ask, ‘Can you read me this scripture?’ so spiritual part of treatment is very helpful, especially in older children.

Nurses expressed an ability to identify a child who needs psychosocial help, again through their experience rather than formal teaching.

“If a child is not happy, they will cry; if husband and wife, they will argue a lot, maybe they need money, so we need to help them financially Sometimes they are (parents) fed up of just being in the ward waiting for treatment so they start giving excuses, e.g., “mama/papa blo me die.” (My father/mother died)

“They ignore us when we go to give treatment. They give their back to us. They will say, “Puttim marasin lo hap!”(Put my medicines there!)

They refuse when we try to cannulate, “Yupla sutim me planti taim.” (You pricked me too many times). It’s hard to tell them, “You are sick, you should let us help you.” So, I leave the medicines and go back to them later when they are ready.

To help children with psychosocial needs, the staff identified two interventions, and that is to involve the psychiatric team and also individually, try to make friends with the child in order to gain their trust.

“I try to play with them and make them forget about their pain. You must first be friendly with them and then they will accept you. If you are harsh on them, you will not get it done. At least, for a few minutes, find time to sit and talk with them. If you share something with them then he or she becomes my friend, when I’m on duty, they say: “oh, friend blo me!”(Oh, that’s my friend!). Especially, chronic patients, they know nurses and become friendly with whoever they’re comfortable with.”

Most nurses (84%) agreed that there is a need for a specialist paediatric palliative care team:

As general nurses, we give medicine and other nursing care, but we don’t know how they think and feel.

In a stressful workplace, it is a need.

In oncology, we have patients that stay for a very long time in the ward. We need to talk to them day by day, encouraging them. We need a Palliative care ward and have our staff trained so that we know what we are doing.

At the moment, we are caring for patients through our experiences or pre-training days. We are doing our best, but we need to train our nurses