Many children who have a palliative care need are cared for at home. In this section Dr Maria Brenner offers practical advice on moving from care in a professional environment to caring for a child at home.
This is one of two types of “transition care” that a child who has a palliative care need may undergo. The other is when they move from a child care setting to an adult care setting. For advice on moving from child to adult services please click here: Transition Care – Child Services to Adult Services
At the bottom of this page you will find further links and downloads that will help you care for your child at home.
Bringing you child home
Ideally, planning to care for a child at home begins once it is established that the child, with the appropriate support, could be cared for in their own home. This initially requires the main care team, the family and a wide range of health care professionals working together to identify the extent of support services required for a child to be cared for 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 various care services, as the parents begin to transition to being the primary care givers. This initial stage can take a significant amount of time as a plan for caring at home is established.
Families have a number of support needs, educational, social, financial and emotional, during and after the transition to caring for a child with complex care needs at home. There are some very practical issues on which you as a parent or guardian can focus on, guided by your clinical care provider. This is not an exhaustive list but addressing each issue can enhance readiness for discharge and can form the basis of a safe and supportive transition.
Understand what you are specifically responsible for in managing your child’s health at home.
Meet with your Public Health Nurse/Community Children’s Nurse and your GP before your child is discharged home.
Learn what might make your child’s condition better or worse; know what warning signs to watch out for which might suggest a change in the child’s condition, and how you should respond to this.
Know your child’s medications and how to use our child’s medical equipment and supplies.
Know who to call if you have a concern – have a list of key contact information for all involved in your child’s care.
Have a written plan that describes how your child’s physical and developmental needs will be met, including access to appropriate support systems (transport, car seats, pushchairs etc.).
Understand the appointment schedule for each support service you will require after discharge.
Written by Maria Brenner, 2014
Main National Home Help Services
Children’s Outreach Nurses Programme
The Children’s Outreach Nurses programme is a joint programme of the Irish Hospice Foundation and the Health Service Executive.
The Children’s Outreach Nurse is the vital link between paediatric consultants and relevant professionals and the families in both acute and community settings. They ensure a coordinated approach and continuity to care and provide vital reassurance for families. They strive to facilitate smooth transitions between services and provide a bridge between hospitals, community care services and specialist palliative care services.
The are the informed resource in relation to the children’s clinical and nursing needs, and help in devising clear documentation that reflects the care required by the child at home that has been planned by the child’s Medical team, Allied Health Care Professionals and the parents as primary care givers.
Outreach Nurses Team
There are Eight Outreach Nurses dispersed around the country. They help alleviate the regional inequity that can exist in access to services. Nurses are currently based in the following locations and cover the surrounding counties:
How are you referred?
Any health professional can make a referral. Upon acceptance of the referrals by the paediatrician, the children’s outreach nurse involvement commences.
Jack and Jill Children’s Foundation
The Jack and Jill Childrens Foundation is a registered charity that provides in home respite to children 0-4 years, with severe neurologicial conditions. We also provide End of Life Care to all children 0-4 years. Our Specialist Children’s liaision Nurses offer hands on care, advice and support. In addition to this they co-ordinate up to 80 hours in home nursing care service per month to all children who require End of Life Care.
Link to website: Jack and Jill Children’s Foundation
LauraLynn@Home is a hospice at home service providing hands on care to children with life-limiting conditions in the family home. Care is provided by a team of experienced nurses and healthcare assistants and includes planned respite, transitional care, crisis care and end-of-life care. LauraLynn@Home is currently a Pilot Project and will not replace services currently provided in the community but will be an additional service provided as part of the child’s over all care. LauraLynn@Home will work in collaboration and complement the care provided in the community by other statutory and voluntary organisations. LauraLynn@Home is currently being piloted in two Health Service Executive Regions; Dublin – Mid-Leinster and Dublin / North East.
Link to website: LauraLynn@Home
Northern Ireland Children’s Hospice Care at Home
The Children’s Hospice community teams operate throughout Northern Ireland providing respite and end of life care in the child’s own home. Additional nursing support is provided by the Hospice at Home service. The team also provide a 24-hour, 7 day a week on call service for families. The Children’s Hospice at Home Service aims to provide:
- Planned respite and support
- Emergency respite and nursing care
- End of life care within the family home
The service is provided by a ‘bank’ of fully trained staff nurses and care assistants.
Link to website: Northern Ireland Children’s Hospice Care at Home
Further Information and Help
- Respite Services/Short Breaks: Understanding what respite care is and gaining access to respite care to help you care for your child at home
- Planning Ahead: Understanding Advanced Care Planning
- Links to Care and Support Services
- App for mobile phones, tablets and computer, which aims to help families manage care for loved ones