A group of people are sitting outside, eating, drinking, talking, sharing and laughing together. Children are running around, playing games and doing craft. It could be a celebration or a birthday party but it isn’t.
This is the scene on the verandah every three months at Manly’s Bear Cottage, New South Wales’ only children’s hospice. The occasion is a Back to Bear Cottage BBQ, part of the “Footprints in the Sand” bereavement program. This is an opportunity for bereaved families to come back and visit. For some, Bear Cottage may have been the last place they saw their child; for others, it may be a place that holds some magical memories. For all of them, it is special.
The BBQ’s started three years ago in response to an increasing number of families that were popping in to visit – to see staff and feel close to their children. Sometimes the visit worked well, the staff were familiar and the floor was quiet so there was time to be with the family. On other occasions, it was not the positive experience that families were hoping for. Thus, the concept of the Back to Bear Cottage BBQ was born.
The idea was to give families an opportunity to visit while ensuring as much as possible a positive experience. No one was really sure how it would work, whether families would find it beneficial. There were many unknowns; would families want to come, how would the mix of bereaved and non-bereaved families work, who to invite? Bear Cottage decided to ask all bereaved families from the previous four years and hope for the best. The first BBQ went well with seven families attending. Their children had died as recently as only two months earlier and up to three years before.
Clinical Nurse Specialist Philly Smith said research showed that families received a lot of support from each other and this quickly became obvious at the gatherings.
“Although staff did the introductions and got conversations started, that was as much as they were needed. Families shared their experiences, discussing what they found hard, the funny moments, the many different and varied ways they honoured their child and how they kept memories alive. The realisation that they shared the overpowering emotions which could be considered a type of “normal” was tangible. Newly bereaved families understood that it was possible to keep living while acknowledging that their lives would never be the same again,” she said.
“For staff, hearing these families speak is inspiring; it increases our insight and understanding of how they manage, and educates us to what is important for them at the time of their child’s death and beyond.”
Three years on and families are still coming back to Bear Cottage. Whether they attend just once, soon after their child’s death or they attend every gathering, they know instinctively that there is no right or wrong.
“Hopefully, as the afternoon draws to a close, they will go home feeling a little lighter. They have been free to talk about their child with people that don’t feel awkward. They know that they are not alone and the understanding is mutual.
“Bear Cottage acknowledges that these are not the right occasions for every family, and may not even be the right thing for every member of the same family; but paediatric palliative care is about providing options and choice – and bereavement care should be no different.”
Philly Smith is a Clinical Nurse Specialist in Paediatric Palliative Care at Manly’s Bear Cottage in Sydney.
This article first appeared in the Australian edition of ehospice and is republished with permission.
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