Table 5. Respondents’ comments on children’s palliative care.

Category	Comments
1	We dispense some measure of palliative care in some of our hospitals. We admit palliative care cases, manage and discharge, although there are no specialists, no morphine, no registry, no home visits etc. It is not comprehensive.
	Children can benefit from the Palliative Care Units existing in [neighbouring country]
	There are not any activities for palliative care for children in my country.
	Palliative care for children is usually provided by the programmes providing palliative care for adults. No specific paediatric palliative care programmes are currently available in the country.
	There is only onechildren’s general hospital. This hospital provides non-specialized palliative care services to children in need e.g. HIV/AIDS and malnutrition.
2	Activities are begun by NGOs in some places. Professionals (doctors, nurses, management) in the oncological department in [capital city] Children’s Hospital make efforts to establish children’s palliative care. There is a symposium about children’s palliative care held every year. Also, the recognition of children’s palliative care by the national association has achieved a significant impact. There is also an active palliative care committee at the Ministry of Health.
	We created this year a hospital committee for children’s palliative care; decrees have been signed for the national hospital and we are now working on different protocols to formalize them.
3a	There is only one children’s onco-hematological hospital. This offers chemotherapy and symptom control for children in need, but there is not any palliative care or hospice for children in the country.
	There are a few complete palliative care services but they are in big cities. Palliative care for children is growing fast but in a very heterogeneous way at the national level. There are provinces/states that do not have any paediatricians trained in palliative care and other provinces who have several teams in big cities.
	There are several specialized paediatric onco-hematological hospitals that provide specialized palliative care services for children.
	There is only one NGO providing home palliative care to children and young adults as well as psychological support to parents, siblings and relatives.
	There is only one paediatric palliative care service; it is a well-established service; provides 24/7 service with inpatient and outpatient plus one home team The service is only for the patients that are seen at the centre, mostly cancer patients. Trying to help neighbouring countries by providing training to physicians and nurses.
	Progressing slowly. Health care professionals need to be sensitised and trained to refer and support children with palliative care needs. Still lagging behind adult service provision particularly in rural areas.
	The children’s palliative care services are currently limited to two University Teaching Hospitals but there is a Government willingness and plan to spread the services to District Hospitals in the nearest future.
	Hospitalized children suffering for cancer have a palliative care support program but this is generally missing for other specialties.
3b	The Ministry of Social Affairs and Health recommendations for organizing palliative care includes a recommendation for building up children palliative care network and services. The official group for implementation of these recommendations and another group to revise the legislation/need for a new legislation of end-of-life and palliative care include plans for children’s palliative care. University Hospitals have home care teams for children, but in general there is no official plan for children palliative care so far.
	There are palliative care standards at national level in children’s care. Palliative care specialists are trained, before they are certified, both in children’s and adult palliative care on a one year course.
4a	Services for children are provided by the hospital, and upon discharge, quality care is given. It should be noted that there is not a high percentage of children in need of palliative care. Should a case arise, families are very keen to give primary care with our monitoring support.
	All 6 departments of paediatric oncology in the leading university hospitals have developed an advanced service for palliative care.
	We have one children’s hospice. Some children are taken care of in advanced home care teams around the country.
	In most cases families take the total responsibility and provide the end of life care to their dying child. Despite availability of opiates in country, there isn’t proper system of prescribing and consuming opiates for reducing pain of patients. Parents get pain killers, even sometimes opiates, on an ‘over the counter’ basis from pharmacies to reduce pain of their loved one.
4b	One children’s hospice that serves the country; children’s palliative care team in the national children’s hospital; consultant- provided service in one other large maternity hospital; care in other hospitals provided by 'champion paediatricians' (i.e. paediatricians with an interest in palliative care) with the support (either direct or indirect) from the palliative care team in the national children’s' hospital' children in the community cared for in every local health office area by adult community palliative care teams and local primary care and paediatric teams with support of the 10 Clinical Nurse Coordinators for Children with Life-Limiting Conditions’. Four consultants (2.2 whole time equivalents) provide children’s palliative care services – two consultants are paediatricians with specialist palliative care training; two consultants are adult physicians with a special interest in children’s palliative care. children’s palliative care recognised in national model of care for children.
	Seven free-standing residential hospices but many programs in all paediatric health centres

Comments have been edited for clarity and confidentiality

NGO, non-governmental organisation.