Table 3 Parents perceptions of troubling symptoms and palliative care needs

- “Em kisim taim lo pain” (He has terrible pain)

- “Pain lo eye” (Pain in the eye)

- “Headache”

Pain

6 (24%)

- “Em stap lo oxygen, em nonap survive em yet” (She is on oxygen and cannot survive on her own)

- “Kus sa wokim now, em sa sotwin hariap” (When she develops cough, she is quick to develop shortness of breath)

Dyspnoea

7 (28%)

- “Lek han paralyse, eye blind, hard lo sleep, em pilim pain, hard lo toktok, hard lo kisim kaikai lo maus so mipla putim lo tube” (She is not able to move her legs and hands, her eyes are blind, she has difficulty sleeping, she feels pain, she cannot talk, she has difficulty eating orally so we are feeding her through a tube)

- “Em no toktok, em no kaikai lo maus so ol putim mipla lo tube na em sa kaikai. Sampla taim, traim feedim em lo maus” (She cannot talk and cannot eat orally so they put in a tube that helps her eat. Sometimes we try to feed her through her mouth)

Cerebral palsy and feeding problems

2 (2%)

- “Eye solap na blackpla eye blo em go white. Eye bagarap” (He had swollen eyes and the black part of the eye turned white. His eyes are damaged)

- “Eye blo em growth ya” (There is a growth in his eye)

Visual loss

7 (28%)

- “Bleeding gums, platelet deficeiency, iron deficiency, cannot walk because of shortness of breath”

- “Em i sotwin because em gat enlarged spleen, heart blo em ino wok normal so em sotwin” (He has shortness of breath because he has enlarged spleen; his heart is not working normally)

Recurrent anaemia

2 (2%)