How Support Systems Differ in Children's Hospices

Hospice care for those of all ages is an essential service that provides compassionate support for individuals with life-limiting conditions. While many are familiar with adult hospice care, there is growing recognition of the need for more specialised hospice care for children. This requirement stems from the unique challenges of meeting the needs of children and their families as they navigate the difficult journey of a child’s serious illness or life-limiting condition. 

In this article, we discuss the different support systems in children’s hospices, how they are approached, their challenges and gather valuable insights from nurses at Hospice in the Weald.

The Unique Challenges at Children’s Hospices

Differences Between Children’s and Adult Hospices

Children’s hospices differ from adult hospices in several key ways, or as Hospice in the Weald staff explain, “Children’s hospices often have children under the care of multiple medical teams requiring more coordination and communication; medications are more complex and constantly changing, and the care trajectory is less predictable with periods of stability and decline.” This makes the planning and delivery of care highly collaborative and adaptable to the child’s evolving needs. 

Children’s hospices place a strong emphasis on providing age-appropriate activities, events, and counselling support. This includes family events, sibling support groups, and therapeutic interventions like play therapy, art therapy, and music therapy. As noted by our team at Hospice in the Weald, “The goal is to support the child’s development and emotional well-being, as well as address the isolation experienced by the whole family.”

In children’s hospices, the care plans are thoughtfully designed to address the dynamic and often fluctuating medical needs of young patients. This requires a high degree of flexibility and immediate responsiveness from the care teams. Broadly speaking, the care for children must be ready to adjust rapidly to changes in the child’s condition. Additionally, children’s hospices focus heavily on the holistic development of the child, ensuring that despite their medical conditions, they can experience the joys of childhood. Activities such as storytelling sessions, interactive games, and creative arts not only provide entertainment but also play a crucial role in therapy and emotional support.

Furthermore, the family-centric approach of children’s hospices extends beyond the immediate care of the child. These hospices recognise the profound impact a child’s illness has on the entire family unit. Hence, they offer comprehensive support services including practical help, emotional counselling, and specialised programs for siblings to ensure they too are cared for and not overlooked. 

Unique Challenges in Paediatric Palliative Care

Paediatric palliative care faces several unique challenges, including the need for more research and validated practices, the complexity of managing multiple medical conditions, and the ongoing, evolving nature of supporting the child and family over an extended period. This can involve anticipatory grief, adjusting to changing prognoses, and in some cases navigating the transition to adult services.

Hospice In The Weald’s Lead Children’s Nurse highlights that “paediatric palliative care is from the point of diagnosis, which can be antenatal, and it follows them throughout the trajectory of their illness. Parallel planning is also essential as children’s trajectories can be unpredictable which brings a lot of different emotions and challenges for the families.”

While paediatric palliative care comes with a wide spectrum of complex, interconnected issues, they are by no means insurmountable. It highlights the need for specialised, supported, holistic and focused care and our ongoing passion to keep growing caring support networks. We have been seeing the positive effects of the work for decades, and we have immense hope for the future.

One unique service offered by Hospice in the Weald is the ‘Time to Be’ service. This service explores coping mechanisms, relaxation techniques, and provides a space for sharing, communication and emotional support. “Providing support to siblings is crucial as their lives are significantly impacted. They might experience isolation, disruption to their routines, and difficulty understanding what is happening. Our goal is to ensure these families feel included and supported.” After the loss of a child, the continued support through bereavement counselling, remembrance events, and practical assistance ensures that families are not left to navigate their grief alone.

Comprehensive Care Delivery Through Multidisciplinary Teams

Role of Various Professionals in Children’s Hospice Care

Children’s hospice care involves a multidisciplinary team of professionals, including doctors, nurses, counsellors, social workers, and therapists. This team works together to provide holistic care that addresses the physical, emotional, and social needs of the child and their family.

Technological advancements have significantly improved care delivery. For example, telemedicine allows for remote consultations and monitoring, which can be particularly beneficial for families living in rural or remote areas.

Coordination between medical, emotional, and social support is vital. Hospice in the Weald’s Lead Children’s Nurse says “We must be on point with making sure we know who those professionals are so that we can reach out for support or if there are changes in certain aspects of the care. This ensures that the care plan remains live and updated.”

Grief Counselling & Continued Support

Support After a Child’s Death

After a child’s passing, children’s hospices provide comprehensive bereavement support. This includes counselling, remembrance events, and practical assistance. One such practical assistance is the ‘cuddle cart’, which allows families to spend time with their child at home after they have passed away.

As our Children’s Nurse explains, “The grieving process is complex, and it’s important to offer ongoing counselling. Families experience anticipatory grief and need support to navigate the practical matters post-loss. Our aim is to provide continuous support to help families through this challenging time.” This ongoing counselling acknowledges the varied and evolving emotions families face, offering a steady presence and a listening ear as they navigate their grief.

Moreover, children’s hospices understand that the journey of grief extends far beyond the immediate aftermath of loss. Remembrance events play a crucial role in this continued support, offering families a space to honour and celebrate their child’s life alongside others who understand their pain. These events can provide a sense of community and solidarity, helping to mitigate feelings of isolation.

In addition to emotional support, practical assistance is vital in helping families cope with the day-to-day realities following the death of a child. Whether it’s helping with funeral arrangements, providing resources for managing household responsibilities, or simply being there to offer a helping hand, this support is integral to easing the burden on grieving families.

Children’s Hospice Care As A Support System

Children’s hospice care is unique in its approach and the challenges it addresses. It plays a vital role in supporting families through some of the most difficult times in their lives. By offering holistic, family-centred care, children’s hospices ensure that both the child and their family receive the support they need.

Continued funding and community support are essential to ensure these crucial services remain available. As our team put it, “Our role is to put the child at the centre and see them as a child first, not just a patient.”

Children’s hospices offer a beacon of hope and support. The dedication of the multidisciplinary teams, the emphasis on family inclusion, and the ongoing support through the grieving process all contribute to creating an environment where every moment counts. 

In the ever-evolving field of paediatric palliative care, children’s hospices stand as a testament to the power of compassion, community, and unwavering support. They remind us that, even in the face of profound challenges, there is always room for joy, growth, and connection. To find out more about child hospice care or to access our services, contact Hospice in the Weald – Care for Children.