Oral Submission to the Oireachtas Committee
On Health and Children
Public hearing on
End-of Life Care
Presented by
Brid Carroll
Chair of the Advisory Committee
The Irish Childhood Bereavement Network
The Irish Childhood Bereavement Network welcomes the prospect of addressing the house on behalf of bereaved children in Ireland. In the overall picture of end-of-life care bereaved children are often overlooked and can be seen as ‘the forgotten mourners’.
We must remember that “a child who is bereaved in childhood is bereaved for life”. Every milestone of their lives will be affected by the loss: communion and confirmation days, transitions through school or college, graduations, jobs, marriages, and births will be occasions tinged with the shadow of a lost parent or sibling.
From figures from the CSO we know that 20,889 children and young people under 19 are currently bereaved of a mother or father.
The vision of the Irish Childhood Bereavement Network (ICBN) is that by sharing and developing good practice, including training and resources, the care of bereaved children and their parents will be improved across this country. The ICBN works to a principle of equity – that each child should have the same opportunity for support regardless of where they live or the nature of the death they have experienced.
The Network is a national organization and represents the views of professionals working with bereaved children across Ireland. It was set-up in 2013 with funding from the Family Support Agency and the Irish Hospice Foundation to provide support, signposting, advocacy and best practice. Our Advisory Panel has representatives from leading national organisations supporting bereaved children.
Speaking with practitioners in the field, a consensus would be held that most bereaved children protect their parents and hide their grief believing that they (the parents)are already overburdened.
It would also be considered that the most unhelpful situations for bereaved children are the script of silence in a family which non-verbally states: “We don’t talk about Mum or Dad or their death in the family anymore”.
Secondly, the fact that children are excluded from the final illness or from the rituals surrounding the funeral, due to the misconception that “they are too young to understand” or the belief that exclusion will protect them is not beneficial. Such exclusion can lead to a child having ‘unfinished business’ with the deceased which can complicate their grieving.
We know that children need acknowledgement and inclusion in order to process their grief successfully. We also know that early intervention with bereaved children precludes future pathologies and is preventative work.
Where then can bereaved children look to for this support?
Research indicates that at least 60% of the population can process their loss if they have information on what is normal in the grieving process and with the care of their natural support networksof family, friends, schools and local community.
But what happens if you are 9 years old and your natural support network (your parents) are all consumed with your sibling’s illness and death and cannot be there for you?
OR what happens if your Dad has left for work one morning takes ill or dies tragically and is dead within hours outside of any palliative care setting?
Who will support the child then?
In twenty five years of practice I know that 99% of children attending would respond that they have spoken to no one about their grief.
Our school systems have a huge influence on children’s lives. We in the ICBN believe that schools in particular can monitor a grieving child, noting difficulties which might arise. Making parents aware of such difficulties and referring to support services if necessary.Other community supports can hold a similar role.
An Audit of Childhood Bereavement services in Ireland (2010)highlighted the inequity and fragmentation of services nationally. It also indicated that in the absence of quality minimum standards and regulation that service providers look to the Childhood Bereavement Network (UK) for such provision and guidance.
The ICBN believes that good bereavement support for childrencan be achieved through empowering the natural support networks of the child so that the family can grieve and support simultaneously. How might this be achieved?
We recommend the establishing of an agreed framework for community, public, volunteer and professional education with respect to childhood bereavement in Ireland.
To date there is little or no research into childhood bereavement in an Irish context and the impact and consequences of such a loss. Nor are we fully aware of the supports needed by these children.
Therefore we recommend that an agreed research agenda in respect of bereaved children be developed.
Since its inception the ICBN has created a stand-alone information website which will go live in the coming weeks. The network has worked in collaboration with The Childhood Bereavement Network (UK) and with similar networks across Europe. Membershave attended an inaugural meeting of The European Family Bereavement Networkand others are participating in the development of web- based learning tools for teachers in conjunction with the All Ireland Institute for Hospice and Palliative Care.
Therefore we recommend continued support for networking of Irish and European bodies working in child bereavement.
In the light of the diverse service provision which exists at present
We recommend the development of existing and new services within an agreed framework that includes the development of standards for Bereavement Care for children in Ireland.
In conclusion let us consider Childhood bereavement support as a three legged stool. We have the child as the seat of the stool and the three legs represent the family, schools and services. We know that if any of these supports are not functioning well the child’s world like the seat can collapse and become non-functional.
We believe that various Government departments namely Education, Health, Finance and Social Protection have a duty of care to the future of bereaved children in Ireland. With their support we the ICBN can fulfil our vision for bereaved children and gift them with a legacy for future generations.
Thank you.
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