Models of Children’s Palliative Care Provision
Within countries providing children’s palliative care there are a variety of different models of care.
Children’s Palliative Care within a General/Adult Hospice Programme
Home-based care programmes provide care to patients and their families.
The advantages of this model:
- The child is cared for within the home and community
- Care is culturally acceptable
- Health care for the child will also benefit other family members
- Care is cost-effective
- The child may be overlooked as the adult needs are often dominant
- Much of the care is dependent on community caregivers or volunteers with little understanding of CPC
- Many HBC programmes do not have access to pain relieving drugs or health professionals
Children’s Palliative Care with Educational Day Care
The Day care centres, some called Community Palliative Day Care centres, have a number of advantages especially when linked to a Home Based Care programme.
Some have early childhood development programmes and / or after school programmes; whilst others are linked to access to members of the interdisciplinary team.
- Keep children in the community with access to palliative care services and members of the interdisciplinary team
- Include ECD activities and stimulation through supervised play
- Provide a period of respite for the primary caregiver – to enable sick parents to rest; healthy parents to work; elderly caregivers allowed to recover strength; child caregivers able to attend school
- Safe havens for children
- Provide nutritional support
- Often opportunities to educate family members
- May be centres for support groups for OVC, Grannies, adolescents
- ECD activities may become the primary focus of the project
- Few people have CPC knowledge and expertise
- Insufficient nursing staff to provide CPC service to children in the day care
- Times of day care may not permit parents/guardians time to seek work
Hospice In-Patient Units for Children
These are ideally part of the continuum of care for children and provide back-up beds for community patients. They may be attached to a hospital or free-standing / independent units. This is the most expensive form of Children’s Palliative Care. Children may be admitted for end-of-life care; pain and symptom management; nutritional support; or for periods of respite.
Children of sick or dying parents may also be admitted to units whilst awaiting placement
- Children receive appropriate palliative care
- Close monitoring of condition and symptoms
- Safe environment for care
- Supervised management of pain
- Clinical nutritional support is provided
- Assessment of new treatments and drug regimes
- Initiation of ART and TB treatment can be done under strict supervision
- The most expensive model of care
- Takes child away from the family when there are no family accommodation facilities
- Often far from the child’s home so may be separated from family
Hospital–based Children’s Palliative Care
Palliative care may be initiated within the hospital or may be brought about by a partnership between the hospital and a hospice or home-care programme.
- Reaches more children
- Improves CPC skills of staff
- More chance of sustainability
- Access to medical and nursing care and access to medications
- Dependent on resources of the hospital and support from hospital management
- Turnover of staff leads to loss of skills
- Child is separated from family
Comprehensive programmes with Home Based Care, Day care, In-Patient Care and integration with Hospital and Clinics
CPC should be available for each child wherever the child needs it. Comprehensive programmes facilitate the provision of CPC along the continuum of care.
The importance of networking
Whichever model of care is provided, it is essential to develop strong networking partnerships that support the holistic need of the child.