Community-based end-of-life care for children
An article written by A. Prof. Tiina Jaaniste, Marisa Eamens, Therese Smeal and Sandra Coombs
Why research in this area is needed
When a child is diagnosed with a life-limiting condition, many families express a strong preference for their child to spend their final days at home. Home offers a sense of comfort and familiarity, provides parents more control over the environment, and allows extended family and other key people to be present if desired by the family. Making this possible requires a range of timely and coordinated community-based supports.
In Australia, community palliative care teams work hard to meet the needs of children and families during this difficult time. However, most community palliative care nurses spend the bulk of their time supporting adult patients with little to no experience or training in paediatric end-of-life care. Caring for children at the end of life is fundamentally different from caring for adults. Children face different types of illnesses, require different medications and dosages, and have unique developmental needs. Furthermore, the psychosocial landscape is more complex — family dynamics, sibling relationships, and parental grief all play a significant role which community nurses need to navigate.
We conducted this research to better understand the experiences and challenges of community palliative care nurses working in New South Wales when caring for children at the end-of-life.
What we found
When we spoke with 11 community palliative care nurses working from across New South Wales, they offered valuable insights about what it’s like caring for children at the end of life. [1] Three areas of challenges were identified:
- Getting the appropriate resources
- Nurses told us that it can be difficult to access timely paediatric-specific, end-of-life training; most end-of-life training is geared towards adults.
- Access to the right medications and equipment for paediatric patients can be difficult, especially for those working in regional or rural areas.
- Unique aspects of paediatric care
- Nurses spoke about lack of confidence when it comes to caring for children. It’s not something they do often, and it’s very different from adult care.
- Working with families- especially when siblings are involved- adds another layer of complexity that can be challenging.
- System-level challenges
- Community-based palliative care for children is provided within adult-oriented service models, which may not adequately meet the needs of paediatric patients and their families.
- There is a lack of 24/7 support for families.
- There are challenges in how information is shared between teams and organisations, and across care settings, making it harder for community palliative care nurses to provide the best possible care.
What are some possible applications?
Based on the insights and feedback we received from the nurses, there are numerous practical suggestions that could optimise the experience of community palliative care nurses and consequently the care they provide. Some of these are already embedded into routine practice however may require further improvement in their implementation.
- Early introductions. It could help if hospital paediatric palliative care (PPC) teams introduce community palliative care nurses to families early. This could happen before discharge from hospital— maybe through a telehealth call.
- Team up for home visits. Joint home visits between community palliative care nurses and specialist PPC team could help build confidence among community nurses, as well as optimising continuity of care.
- Sharing resources. Community palliative care nurses would benefit from access to paediatric-specific resources, including age-appropriate resources for supporting siblings.
- Contact with specialist PPC team. Community palliative care nurses appreciate and desire opportunities for interaction and input from specialist PPC teams.
- Resource availability. Optimising access to paediatric-specific resources (equipment, medications, training) is important.
- Liaising with universities. It would be helpful to work with nursing programs to include more paediatric palliative care content in undergraduate and post-graduate courses.
- Opportunities to debrief. The provision of structured debriefing opportunities for community palliative care nurses following the care of a dying child may help them to process and learn from their experiences.
- Shared documentation: Consideration is needed into how to improve systems of shared documentation across organisations.
Where this study fits in
This qualitative study was part of a larger project which also included a quantitative survey of 52 community palliative care nurses. [2] Taken together, the qualitative and quantitative data highlight potential areas for improvements in paediatric community palliative care service delivery and training.
References:
- Jaaniste T, Helyar M, Eamens M, Smeal T, Coombs S, Mherekumombe M. Challenges, benefits, and future directions of pediatric home-based end-of-life care: A qualitative study. J Palliat Care. 2025.
- Helyar M, Eamens M, Coombs S, Smeal T, Mherekumombe M, Jaaniste T. Attitudes and experiences of community palliative care nurses regarding pediatric home-based end-of-life care: A statewide survey. J Palliat Care. 2025;40(3):215-224
Authors
A. Prof. Tiina Jaaniste
Head of Pain & Palliative Care Research, Department of Palliative Care
Sydney Children’s Hospital & School of Clinical Medicine, University of New South Wales
Marisa Eamens
Nurse Practitioner
Department of Palliative Care, Children’s Hospital at Westmead
Therese Smeal
Palliative Care Area Nurse Coordinator
Palliative Care Service, South Western Sydney Local Health District
Sandra Coombs
Clinical Nurse Consultant/Quality Projects Officer
Department of Palliative Care, Sydney Children’s Hospitals Network