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31st January 2020 Latest News Palliative Care

Supporting the family heartbreak of a child in palliative care

supporting the family heartbreak of a child in palliative care

Unique parent mentor program at Women’s & Children’s Hospital.

The first stage of a unique parent mentor program to support the families of a child with a terminal illness is about to get underway from the Women’s & Children’s Hospital (WCH) in July.

The Australian-first program within Paediatric Palliative Care is being funded by a grant from The Hospital Research Foundation.

Amanda Bodycote, Grief Support Coordinator and Sara Fleming, Clinical Lead within WCH’s Paediatric Palliative Care Unit are leading the program’s planning and pilot stages to support families who are faced with the heartbreaking news that their child has a life-limiting condition.

“The primary purpose of this pilot study is to provide these families with support, unique understanding and encouragement, which only another parent who has walked a similar path can provide,” Amanda said.

“This parent mentor program will involve recruiting and training volunteer bereaved parents to provide a mentoring role to parents and caregivers of a child with a life-limiting condition.

“Every family’s journey is different but having the support of someone with a similar lived experience can help reduce parents’ feelings of stress and social isolation and help them feel less overwhelmed at what they are facing.”

There are numerous peer-led mentor programs across Australia, however there is no Australian hospital-based peer support program targeting parents and caregivers of a child with a life-limiting condition.

The first stage of the THRF-funded program starting in July involves gaining insights from bereaved parents, involving them in the design of the program and learning what model of support they believe would be beneficial.

“We then aim to categorise and theme insights gathered from families with lived experience to inform the next stages, before starting to recruit and train parent peer mentors,” Amanda said.

“We’re so grateful to The Hospital Research Foundation for supporting this much-needed pilot program.

“Our families in Paediatric Palliative Care often express their desire to connect with another family that ‘just get it’ and understand their experience, so this will help meet this need.”