Survey reveals challenges faced by many families

Ireland’s only children’s hospice has described as stark the findings from two new surveys looking at the challenges faced by families caring for a child with palliative care needs.

The new Children’s Hospice Week survey reveals challenges faced by families in Cork and around Ireland. Children’s Hospice Week, running from 18-24 May, raises awareness about the lived experiences of children with life-limiting conditions and their families. Currently there are 64 families in Cork 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.

One of the surveys carried out by LauraLynn in April 2025 unveiled some 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

In February 2025, researchers at LauraLynn in partnership with UCD School of Psychology completed another survey to measure the administrative burden on parents. This was the first time parents had been asked to voice the impact of these specific administrative demands. They found:

Families spend an average total of 17.5 hours per week on administrative tasks relating to their child’s care:

96% say it affects their mood

93% report increased stress levels

86% say these tasks negatively impact their energy levels

71% feel less confident in their ability to cope.

Speaking at the launch of Children's Hospice Week, An 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.”

Children’s Hospice Week is dedicated to raising awareness for children’s hospice and palliative care in Ireland. This year’s theme is 'Every Step, Every Challenge, Together.'

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.”