Parents of children with a life-limiting condition left overwhelmed and isolated by pandemic

Parents of children with a life-limiting condition left overwhelmed and isolated by pandemic

LauraLynn Ambassador, Garry Ringrose, pictured alongside Niamh and Sean Ryan (13) from Portlaoise at the launch of Children's Hospice Week in LauraLynn. Picture: Andres Poveda

Over 60% of parents who are caring for a child with a life-limiting condition have reported feeling very isolated during the pandemic.

There are approximately 3,840 children in Ireland living with a life-limiting condition, 1,900 of whom have palliative care needs, and Covid-19 has had a drastic impact on their lives and the lives of their families.

A survey conducted by Ireland's only children's hospice, LauraLynn, has revealed some of the stark realities that these families have been faced with over the past 15 months.

The majority of respondents revealed that they have been experiencing a great deal of isolation as many of their supports were impacted by the pandemic and restrictions.

Over 85% of parents said they felt completely overwhelmed and totally exhausted as a result of providing care for their child with a life-limiting condition during the global pandemic.

LauraLynn has remained open throughout the pandemic and strived to continue caring for and staying connected to these families.

They are offering respite care, short breaks, crisis care and end of life care and supports to children and families.

A virtual children's hospital was launched as a means of providing supports such as play therapy, music therapy, counselling and symptom management.

A large number of families said this virtual service was one positive that has come out of the pandemic especially those who live far away and find travelling with an ill child difficult.

The virtual support services will continue to aid parents going forward as 70% of those surveyed indicated they will continue to cocoon even though society has begun to reopen.

LauraLynn launched this survey during Children's Hospice Week in order to shine a light on the lived experience of children and families who continue to struggle even as the country starts to emerge from the pandemic.

Kerry McLaverty, LauraLynn CEO, said the hospice supported 212 children and families around the country last year.

"We also know that there are many more children and families out there who are in need of specialised hospice and palliative care and LauraLynn is working towards reaching those families as we mark 10 years at the forefront of children’s hospice care in Ireland later this year," said Ms McLaverty.

"We are inviting the public to help us raise awareness this week and spread the message of the importance of children’s hospice care."

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