A survey launched today by LauraLynn, Ireland’s Children’s Hospice, to mark national Children’s Hospice Week, has revealed some of the stark realities facing families in Ireland who are caring for a child with a life-limiting condition.
Approximately 3,840 children in Ireland are living with a life-limiting condition, 1,900 of whom have palliative care needs. As the only children’s hospice in Ireland, LauraLynn conducted the survey in order to draw attention to the lived experiences of families caring for a child with palliative care needs, especially during a global pandemic.
The overarching message emerging from the findings is that parents (over 85%) are feeling completely overwhelmed and totally exhausted as a result of caring for their child with a life-limiting condition during the pandemic.
Over 61% of parents reported feeling a great deal more isolated as a result of caring for their child with a life-limiting condition. Continuing to care for and stay connected to families caring for their child at every stage of the pandemic has been a priority for LauraLynn. Its initial response was to launch the first Virtual Children’s Hospice in Ireland, moving its specialist care and supports online as a way to help bridge that isolation for the children and families. LauraLynn has, and will continue to, remain open and is offering respite care, short breaks, crisis care, end of life care and supports to children and families in addition to providing a virtual service.
60% of those surveyed said that they have benefited from virtual supports provided by LauraLynn, which include Play Therapy, Music Therapy, Counselling and Symptom Management, during the pandemic. Equally, parents found having access to a phone support service helped them feel less alone.
When asked about whether the pandemic has had any positive impacts some families reported that the access to LauraLynn’s Virtual Hospice was a positive. Families unable to travel to LauraLynn to avail of Family Supports and Symptom Management are now finding they are able to access these services more online.
This is particularly benefiting families living far away, travelling with an ill child is difficult and with our virtual hospice we have been able to bring LauraLynn to those families, especially as many of these families have decided to continue to cocoon. 70% of parents surveyed have reported that they will continue to cocoon even as society starts to reopen.
LauraLynn CEO, Kerry McLaverty says: "As we shine a light on children’s palliative and hospice care this Children’s Hospice Week the findings of this survey are both worrying and concerning but, having supported 212 children and their families in every county of the country throughout 2020, we are all too aware of the day to day challenges these families face. 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. We are inviting the public to help us raise awareness this week and spread the message of the importance of children’s hospice care.’’
LauraLynn is celebrating Children’s Hospice Week this week. It is the only week in the year dedicated to raising awareness for children’s hospice and palliative care in Ireland.
LauraLynn relies heavily on the public’s support to fund our hospice services. Please support LauraLynn this Children’s Hospice Week by making a donation.
