Challenges to transitioning to home

Many children and their families may wait protracted periods of time in acute hospitals while negotiation ensues between the acute and community services over a wide range of transitional care needs:

• Absence of a coordinated vision for discharge in the tertiary care setting and no clear time frame for discharge
  
• Lack of leadership and clear negotiation and communication between with the parents, primary, secondary and tertiary care services
  
• No clear funding arrangements
  
• Absence of organized home care service delivery
  
• Delayed modifications to the child’s home
  
• Procurement of adequate technology for home care
  
• Parents’ financial challenges in changing work patterns
  
• Preparation of parents for the physical care of the child at home.

Assessing needs for discharge to home

There is a need for a thorough and accurate assessment of the needs of the child and family. Ideally, planning the discharge home of a child with complex care needs begins once it is established that the child, with some accommodation, could be cared for in their own home. This initially requires the tertiary care centre, together with the family, to widely consult with the multidisciplinary team to identify the extent of support services required for the child’s care at home. This consultation phase is key to beginning the process of planning for home care and begins the process of establishing a trusting relationship between the parents and the primary, secondary and tertiary care services, as the parents begin to transition to being the primary carers.

Specific needs

Education needs. Parents need to know how to care for the child, how to identify changes in the child’s condition, how to respond to any changing conditions, and how to access relevant support services in relation to equipment.

For example:

• Airway management and dealing with airway emergencies
  
• Care of a tracheotomy
  
• Care of the ventilated child and care of associated technology
  
• Care of the immobilized child including cleansing and dressing and pressure sore prevention or management
  
• Drug therapies, dosage and adverse effects
  
• Communication – specific aids required
  
• Pain assessment and management.

The family may require:

Care support. Home care nursing, respite services and access to ongoing health support services such as GP, community nurses physiotherapy, speech therapy, psychological support to help parents cope.

Social needs. Housing modifications may be required; parents will require financial advice and support in relation to the cost of caring for a child with complex needs at home; support to access education and developmental care needs.

Integrated care pathway

An agreed discharge plan and a specific care package should emerge from the assessment phase. The implementation of this plan requires a key worker or named coordinator, who has responsibility for acting as a dynamic service coordinator for the family. This means that they will have oversight of the family’s interaction with hospital and community services, financial advice, procurement and servicing of equipment, and the ongoing review and refinement of the family’s needs. This should include maintenance of a record of all appointments, funding plans and budget allowances, with responsibility for identifying and accessing services to support any changing needs of the family.