Background Regional children’s palliative care networks play a role in planning and delivering equitable and high standards of care, support and services to children with life-limiting and life-threatening conditions, and their families1. Our local network has had a parent representative since 2010, and is one of only three to do so.
Aim To evaluate the success of the role
Methods We retrospectively reviewed the agenda and minutes of every meeting held between 2010 and 2013.
Results 15 meetings were held during the study period, and a parent representative was present at 14. Input made by parent representative included contributions to the work plan; engagement in discussions; offering information; and making specific requests.
Evidence was found that all the questions and requests made by the representatives were addressed. There were also clear signs that the representatives had had a wide influence, on shaping their role within out network, they have also influenced the education delivered by our group and made significant contributions to the ongoing work plan.
Do we have regular parental representation? 93% of meetings had a representative present
Do Parent Representatives feel able to speak in the meetings? Only one meeting attended by a representative didn’t have a clear contribution. The parent representatives requested a regular dedicated agenda item, since then all meetings show a clear input.
Are they heard? 7/7 requests were accommodated and 8/8 questions were addressed either within the meeting or by follow up
Do they make a significant contribution? Parent representative lead to a clear development of the parent representative role, as well as a meaningful contribution to virtually every topic addressed by the group.
Applications This study demonstrates an example of good practice that may guide other networks in seeking user engagement. It highlights the impact and value of appropriate parental representation within paediatric palliative care networks. We have shared our experiences with others through Together for Short Lives network summit.
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