LauraLynn, Ireland’s only Children’s Hospice released stark findings from two new surveys today looking at the challenges faced by families caring for a child with palliative care needs.
Children’s Hospice Week, running from 18th to 24th May, raises awareness about the lived experiences of children with life-limiting conditions and their families.
Currently, there are 23 families in Galway using LauraLynn’s services.
The findings give a strong picture of the emotional, psychological, and financial impact and for the very first time, the unprecedented administrative burdens placed on families.
CEO Kerry McLavery said: “Children’s Hospice Week, is a time to share what we’ve learned about the lived experience of families of children with life limiting illnesses.”
“At LauraLynn it is so important for us to ask, listen to and understand what our families really need to make things a little bit better for them.”
“It helps us provide the right care and support through the toughest journey whether that be at the hospice, in hospital or in the comfort of a child’s home.”
“Together with your support, we can meet the needs of these wonderful children and families as best as possible. They deserve nothing less.”
One of the surveys, carried out by LauraLynn in April 2025 unveiled the following from respondents:
Emotional and Psychological Impact:
- 84% feel isolated in their caregiving role.
- 90% worry about the emotional impact on siblings.
- 86% wish they had more time to be a parent rather than a carer.
- 68% find it challenging to focus on parenting.
Caregiving Burden:
- 77% of respondents care for more than 12 hours per day.
- 95% feel overwhelmed by caregiving responsibilities.
- 95% report that caregiving impacts their sleep quality.
- 76% care for their child through the night.
Impact on Family Dynamics:
- 83% worry about not spending enough time with other children.
- 75% find it challenging to balance the needs of siblings.
- 55% find the psychological impact on siblings challenging.
Financial Struggles:
- 86% say caregiving impacts their finances.
- 83% had to give up work, and 91% had to reduce work hours.
- 60% feel financial supports are inadequate.
- 63% find the financial implications challenging
Speaking at the launch of Children’s Hospice Week, Taoiseach Micheál Martin TD said: “I was honoured to meet Cillian, his family and representatives of LauraLynn. Families who use LauraLynn face immense challenges across every aspect of their lives.”
“As a government we have committed to investing in palliative care to achieve full national coverage of hospice and community services; to developing a new national policy on palliative care for children and to increasing funding to children’s hospice care.”
“As Children’s Hospice Week kicks off, we say to families caring for a child with palliative care needs, we understand the challenges in your everyday life, and we will continue to support you.”
