Case study: Supporting parents of children with life limiting illnesses

We worked with the Women’s and Children’s Hospital’s Paediatric Palliative Care Unit and parents of children with life limiting illnesses to co-create a new peer-to-peer model of family support.

Photo: Article in the Sunday Mail, 30 October 2022

The background

In 2021, we were approached by the Women’s and Children’s Hospital (WCH) in Adelaide, South Australia, to provide training and coaching to the team developing a new peer-to-peer model of family support.

The model was in response to requests from families for individualised face-to-face support at a local level. Bereaved parents had told the WCH that one-to-one support from someone with their own experience of loss was the missing type of support they needed throughout the palliative care and loss journey.

Our approach

  • We respected the high level of skill and expertise provided by the paediatric palliative care team, while TACSI provided partnership support in a scaffolded co-design process.

  • We trained and coached the paediatric palliative care team over 12 months and supported the team to authentically and respectively connect with and access the lived experience of bereaved families. These families brought their lived experience and shared their insights into what would have been helpful for them during the loss of their child.

  • We tapped into our peer-to-peer patterns, practices, mindsets and learnings from co-designing and delivering other peer-to-peer models of Weavers and Family by Family and used this experience to support the team to co-design a peer support model 

  • We also supported the testing and pilot delivery of the program over a 12 month period and co-evaluated the outcomes with the hospital’s project team to inform further delivery of the model

Parents reported that after the support of the peer-to-peer model they:

  • Felt better supported to navigate the journey of their child's life limiting condition

  • Felt more connected to others and less socially isolated through their journey

  • Could process their grief and loss with someone who had been through a similar journey

  • Felt that the uniqueness of complex grief was respected and heard

  • Felt connected to people that would not have ordinarily met through shared grief and loss, helping them to see hope for a different future

This table below shows the outcomes gained by families who accessed the service:

This table shows the outcomes gained by families who accessed the service

What happened next?

  • The training and coaching approach teamed with the peer-to-peer patterns, practices and mindsets was used to support the development of a peer support program in paediatric palliative care across three locations (WCH, CHQ bereaved and non-bereaved families, and Hummingbird House Children’s Hospice).

  • We supported the development of context specific peer programs including families who are non-bereaved where a child had been impacted by the serious condition of sepsis that had resulted in significant disability.

  • The Women’s and Children’s Hospital will continue to identify and secure funding for the model to continue to support families.

Our ambition for the future

  • We’ll continue to build on and develop the evidence base of peer-to-peer practices and responses to support the spread and scale of peer support through lived and living experience

  • We’ll work with other teams across social and health portfolios to co-create more responses that invest in lived experience in service delivery through scaffolded peer-to-peer responses

  • We’ll support more organisations to co-create and deliver scaffolded peer to peer responses

  • We’ll work alongside frontline practitioners to work with an emerging workforce response of peers and lived experience

Interested in co-creating a service or model that supports people through investing in lived experience and peer-to-peer practices?

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Redfern NSW 2016

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